It appears to be that time of year again. The commercials are in full swing, the end caps at the stores are displaying weight loss items, self help books, and all sort of gimmicks to help you achieve your NEW YEAR RESOLUTIONS. I know little about this tradition, but I know that I don't think that I have ever kept one new year resolution.
After coming home from the hospital, just days before a new year was to begin, the traditions of setting a resolution struck me as odd. I had just spent five and a half months away from my home. I found a new room that my family called home. I spent most of my days hanging in an ICU praying my baby would live to see another day. Now, finally at home, I have this child that I am trying to figure out what to do with. Looking around the living room, new pieces of medical equipment was scattered all over. There were cords and paperwork and phone numbers and burp clothes and feed pumps, it was not at all how I envisioned bringing my child home.
The problem, it did not matter. It did not matter what I envisioned, this is how God had planned it and at was perfect. She was home and not much else mattered than that! Praise God that for the first time in months, we were all under the same roof. Praise God, the first time in months we could sit as a family without nurses and machines interrupting our thoughts and conversation.
I realized then that a new year resolution actually takes you on a journey. I don't believe it is about the end result but the journey that you took, what you learned, who you are now, and what was taught to you that is the most important thing. I realized that we are missing out by focusing on the end result when it is the journey that counts.
When I first heard of Lydia's diagnosis, Down syndrome, I was given a poem called Welcome to Holland. Maybe you are familiar with it but it talks about wanting to go somewhere and you end up in Holland. It is not where you intended but it is not bad. Things are different, but there is just as much beauty and majesty as the other place. While at first you may compare where you wanted to go to Holland, eventually you settle into your new life.
It is the journey that means the most. Yes, I was nervous about many things with Lydia. I have to say that her medical issues has overshadowed many of the typical doubts about Down syndrome. However, now that we are transitioning into not as sick of a child, there are more and more things about Down syndrome that creep up and leave me in a place I don't like to be. However, it is not the end result, it is the journey, the learning process, the shaping and the molding that is the most important piece to learning about your new surroundings, learning about where God has placed you.
There are many times that I sit and I compare Lydia to the other girls. I know I shouldn't, but I do. However, I realize more and more that Lydia is who she is suppose to be. She may never intend to be the brightest scholar in the world, she may never be a six foot tall basketball player. But she can teach you about joy, about simple things, about love, about laughter, and about being cute. Some things are very similar to Ellen and Allison and others are completely different. And that is just fine. She is right where God wants her to be.
So, if I were to set new year resolutions for last year it would have been to read the Bible in a year and to lose weight. Here is my take on both of them. While I am currently losing weight, I probably have gained more weight than I have lost! I will end the year on being three months behind in my read through the Bible in the year. Does that mean that I have failed?
NO! What I have learned is more valuable than accomplishing those resolutions (if I would have set them!). I may have not finished my read through the Bible in a year, in a year. However, I do believe that God gave me the verses that I needed exactly when I needed them. I know that I made a very diligent attempt at finishing in the year and I was leaps and bonds ahead of where I was the year before. But, I also know that my personal relationship with God strengthened a lot simply because I was being more obedient. No one success all of the time the very first time around. I am not perfect, but I have created habit. I am proud of myself for where I am. See the process of teaching myself to be obedient to get up early and read the Bible, to put my relationship with Christ first, to realize how much better I function when I am walking in God's way, is much more valuable than saying I completed the Bible. It was more than completing a check list, it was about walking a journey, learning and exploring my relationship.
My weight. It has been a battle for a long time. I, however, do not want to get on a diet craze and crash. In my life, I also know that food runs much deeper than just another new diet. Feeding is always a struggle with Lydia. I have learned so much about food and what it is used for for our body. I have learned healthy ways of eating and managing stress. I have learned why God made for and the purpose. I have also learned a lot about faith. Faith in God that He will provide, He will teach, and He will allow success in His time.
I can't quite put into words all of the things that I have learned myself about eating, but I know that I am in a good place. Yes, I have lost weight and I have lost inches, but the most important thing that I have gained is a new perspective. A new perspective on life and weight. My weight did not just come on in a year and it represents pain and stress and running away from problems. I knew that I needed to deal with a lot of that before I was able to successfully change my lifestyle and learn things in moderation. I also learned that I need to know this so I can teach my children very healthy habits and deal properly with Lydia and her feeding issues.
I have to say that right now I am not be any thinner than when I started off last year, but I am healthier in so many ways. I am in a great position physically and mentally (I'm in a good routine of getting exercise and managing stress, and eating for the purpose of nourishment and not just pleasure, I also am managing the stress of feeding Lydia much better). It was a process to learn this, to unlearn what I had been taught and obedience to step forward. This is an important step if I want to do this properly and honor God. I can truly say I am happy with this progress.
Maybe none of this makes sense, maybe it makes perfect sense, but to me the new year resolution craze is silly. Lydia and the life of Down syndrome has taught me that my expectations are only that. Things and situations in life will happen, they will change you, and they will take you on unexpected paths. By being stuck in one thought of thinking, you rob yourself of the journey; the most important part of your life.
I have found too, that some journeys are very difficult. Sometimes you may think that you will be a mom for your entire life and your child dies suddenly, leaving you empty handed and on an unpredicted journey of grief. You may think that you will have a healthy child and you learn about the diagnosis and it takes you on a journey of living life in the hospital, not knowing what will happen from day to day, it will stretch you and teach you and your path will look much different.
No one can tell their path from day to day. God has the entire picture and He is working everything for our good. What I have learned about new year resolutions is to enjoy the journey. Things often don't happen in a year and your path will more than likely take an unexpected curve or dip, but that is OK. Learn, embrace, have faith, and hope in God that you are walking this path to be the person God intended you to be.
I pray that this year I can continue to fully embrace everything about having a child with 47 chromosomes, that I can continue to embrace the feeding journey and rock, and that I am obedient to God and the path that He chooses for me. Here's to another year of Resolution Journey!
Tuesday, December 23, 2014
Thursday, December 11, 2014
You Were Chosen
I was chosen for this journey. This journey was thought out, carefully crafted and given to me. This is my story, this is my life. I have had thoughts in my head over and over about this chosen life. I have many different thoughts that make perfect sense, but when I come to type there is nothing. Yet, I have a push inside to write about this chosen path for me.
I would have never thought that I would be sitting in these shoes, but I can't imagine my life any differently. I would have never thought that I would want to care for another human being the way that Lydia requires, but I am lost when I am not caring for her. What I never thought I wanted, I ended up needing and that is why I was chosen.
God does give us more than we can handle. And that is because we were not meant to handle it on our own. We were never meant to walk this life by ourselves, but with God front and center. With God, all things are possible. We have greatly confused that image. I have learned that too many times to count on this journey. I have seen what happens when I handle things by myself and I don't put God first. It is always better when God is caring me, when He is helping me, when I am seeking His advice. Without that, I fail, I struggle, and I mess up big time.
As stressful as the days are, as frustrated as I get with Lydia, as much as I question if I am doing anything right, as much as I struggle with advocating for Lydia; this is what I was meant to do. This is where God wants me and He has a purpose. While I may question and I may not understand, He sees the entire picture.
Our life is like a puzzle. We can only see one piece at a time. We are not able to see the entire picture. We fumble and we fail trying to find our place. We think we fit here and then something else comes up and we find that was not the right place. Sometimes our pieces are so dark and it seems near impossible to be able to even attempt to find where the piece fits. Sometimes we work on one side of the puzzle when we should be at the exact opposite corner.
God, however, sees the entire picture. He has created a masterpiece and we must trust in His plan that He will finish the good work He started. He knows what the picture on the box looks like. He knows where every piece fits together and He knows how they fit together. We don't have to fumble around trying to find our place, He will guide us.
Even when we are in a dark place, the light will come soon and it will be glorious. But we must not give up because each and every piece is needed to make the final masterpiece. He works everything for the good of those who love Him. Every trial, every dark spot, every circumstance all has purpose and meaning in His timing and in His plan. We are not meant to understand but to trust and to allow Him to create us to be the servants He wants us to be.
As I have struggled a lot lately, I have thought over and over about this. It is so true but so hard. I think back to days before Lydia and that seems like such a long time ago. Sometimes I cringe to think of the person I was before her. Sometimes my life now is so much a part of who I am, I cannot fathom that life anymore.
The daily tasks of Lydia have been wearing me down. Feeding her, trying to figure out what she will eat, making sure she gets enough to eat, juggling her health and education, managing her doctor appointments and her therapy appointments. Trying to make time to have her just be a kid. Trying to parent two other girls and making sure I am meeting their needs. Trying to put time in on my marriage to make sure that is healthy (if that is not healthy than none of my other relationships with my kids are healthy). And trying to find quiet time to study God's Word and let Him pour himself on me (I often struggle with this, but this is the most important part of my day). And then with whatever little time is left, I try to work on me (keeping fit, eating right, taking time just for me, exploring hobbies).
This is the path that was chosen for me. I have to remind myself of that every single day. Some days I struggle with it. Some days I want to curl up and cry. My child is so far behind. That is a hard pill to swallow at times. I compare her to other kids with Down syndrome and see that she is even farther behind than they are and I wonder if I am doing everything that I should be doing. I know I shouldn't do that, but this is reality. I want the best for my child and sometimes I think that love is not enough (I know that's a foolish thought, but it's true). **She is also on a chosen path, just for her. She was not meant to have 46 Chromosomes, she was meant to have 47. She was not meant to have a "normal" anatomy. She is right where God wants her and she is teaching others about self confidence, happiness and true joy. She also is right where she is meant to be!
Sometimes when we are sitting in a room with many doctors and we are trying to figure out what is wrong with Lydia, I feel like I am crazy. They shake their head, knowing something is not right, but there are no answers. When there are no answers I question myself, my ability, and wonder if this is all just made up. I doubt when I should not. But it makes me go crazy trying to think about what to do next. I know people around me have given me those stares and seem to whisper behind me (I think this is probably just my insecurity but this is what I feel). I try to convince myself I am crazy. When in all reality, I am doing what God wants me to do. He alone has placed me on this path and if I am looking to Him and following in His ways, then I should not doubt.
This is the life that was chosen for me. With God's help I can overcome these doubts and insecurities, I can rise and become the very best mom to all of my girls; just as God chose me to do. With God's help I can be the very best wife to my loving husband and I can be a faithful devoted disciple. It is possible; but not on my own.
And to look to someone else's journey and judge is not fair either. They were chosen for something different. I feel like if I could understand this better, I may be able to help someone out and I may not feel so judged. I don't think I ever expect someone to understand my journey, but I should not then try to understand someone else's either. I can share my story in hopes that someone might be going through the same things and can get hope from my path.
Sometimes it does feel lonely. I have seen it all too often people pull away because they don't understand, they are scared of your circumstance, or because you have changed. However, we must remember we all go through seasons and God gives us the blessing of true friends. God is also always there for us. He will never leave us nor forsake us. Mary and Elizabeth in the Bible were given similar circumstances and they could support one another. While God is the ultimate hope, it never hurts to have earthly friends for support and help.
But sometimes I forget that I was chosen for this journey and not someone else. I am quick to judge and pass judgment. I am quick to feel alone and I try to handle things on my own. I forget I have the ultimate friend, I have unconditional love, I have forgiveness, grace, mercy, discipline, and if I am willing to obey Him, He is willing to bless me.
On this journey, I was chosen to learn certain things, not anyone else. On their journey, they were chosen to learn their own things. However, I can come alongside someone and be a friend, I can encourage and I can help. I have to remind myself of this because I can get wrapped up in my own circumstance very easily. I have to remember to continually seek to glorify God in every situation and circumstance. I also have to remember that I am only accountable for my actions, so I better continue to look at myself and see how I can improve on me.
And because I was chosen I am a better person, I have learned some amazing lessons, I have faced some very unthinkable situations, I have been tested to my max, and I have failed, and I have been blessed. I have changed who I am, how I think, how I love, and I have become a better person; all because I was chosen.
For me, it was one special child that God gave me so I could learn these lessons. Sometimes I have to remind myself over and over and over in the heat of pain, frustration, anger, exhaustion. But in the end, to see that smile, to feel her hug, and to watch her progress is such a blessing. It really is all I need. And when my eyes are rightly fixed on Him, I can look on even the hardest time and bring Him glory because He loved me enough to choose me to be right here!
I would have never thought that I would be sitting in these shoes, but I can't imagine my life any differently. I would have never thought that I would want to care for another human being the way that Lydia requires, but I am lost when I am not caring for her. What I never thought I wanted, I ended up needing and that is why I was chosen.
God does give us more than we can handle. And that is because we were not meant to handle it on our own. We were never meant to walk this life by ourselves, but with God front and center. With God, all things are possible. We have greatly confused that image. I have learned that too many times to count on this journey. I have seen what happens when I handle things by myself and I don't put God first. It is always better when God is caring me, when He is helping me, when I am seeking His advice. Without that, I fail, I struggle, and I mess up big time.
As stressful as the days are, as frustrated as I get with Lydia, as much as I question if I am doing anything right, as much as I struggle with advocating for Lydia; this is what I was meant to do. This is where God wants me and He has a purpose. While I may question and I may not understand, He sees the entire picture.
Our life is like a puzzle. We can only see one piece at a time. We are not able to see the entire picture. We fumble and we fail trying to find our place. We think we fit here and then something else comes up and we find that was not the right place. Sometimes our pieces are so dark and it seems near impossible to be able to even attempt to find where the piece fits. Sometimes we work on one side of the puzzle when we should be at the exact opposite corner.
God, however, sees the entire picture. He has created a masterpiece and we must trust in His plan that He will finish the good work He started. He knows what the picture on the box looks like. He knows where every piece fits together and He knows how they fit together. We don't have to fumble around trying to find our place, He will guide us.
Even when we are in a dark place, the light will come soon and it will be glorious. But we must not give up because each and every piece is needed to make the final masterpiece. He works everything for the good of those who love Him. Every trial, every dark spot, every circumstance all has purpose and meaning in His timing and in His plan. We are not meant to understand but to trust and to allow Him to create us to be the servants He wants us to be.
As I have struggled a lot lately, I have thought over and over about this. It is so true but so hard. I think back to days before Lydia and that seems like such a long time ago. Sometimes I cringe to think of the person I was before her. Sometimes my life now is so much a part of who I am, I cannot fathom that life anymore.
The daily tasks of Lydia have been wearing me down. Feeding her, trying to figure out what she will eat, making sure she gets enough to eat, juggling her health and education, managing her doctor appointments and her therapy appointments. Trying to make time to have her just be a kid. Trying to parent two other girls and making sure I am meeting their needs. Trying to put time in on my marriage to make sure that is healthy (if that is not healthy than none of my other relationships with my kids are healthy). And trying to find quiet time to study God's Word and let Him pour himself on me (I often struggle with this, but this is the most important part of my day). And then with whatever little time is left, I try to work on me (keeping fit, eating right, taking time just for me, exploring hobbies).
This is the path that was chosen for me. I have to remind myself of that every single day. Some days I struggle with it. Some days I want to curl up and cry. My child is so far behind. That is a hard pill to swallow at times. I compare her to other kids with Down syndrome and see that she is even farther behind than they are and I wonder if I am doing everything that I should be doing. I know I shouldn't do that, but this is reality. I want the best for my child and sometimes I think that love is not enough (I know that's a foolish thought, but it's true). **She is also on a chosen path, just for her. She was not meant to have 46 Chromosomes, she was meant to have 47. She was not meant to have a "normal" anatomy. She is right where God wants her and she is teaching others about self confidence, happiness and true joy. She also is right where she is meant to be!
Sometimes when we are sitting in a room with many doctors and we are trying to figure out what is wrong with Lydia, I feel like I am crazy. They shake their head, knowing something is not right, but there are no answers. When there are no answers I question myself, my ability, and wonder if this is all just made up. I doubt when I should not. But it makes me go crazy trying to think about what to do next. I know people around me have given me those stares and seem to whisper behind me (I think this is probably just my insecurity but this is what I feel). I try to convince myself I am crazy. When in all reality, I am doing what God wants me to do. He alone has placed me on this path and if I am looking to Him and following in His ways, then I should not doubt.
This is the life that was chosen for me. With God's help I can overcome these doubts and insecurities, I can rise and become the very best mom to all of my girls; just as God chose me to do. With God's help I can be the very best wife to my loving husband and I can be a faithful devoted disciple. It is possible; but not on my own.
And to look to someone else's journey and judge is not fair either. They were chosen for something different. I feel like if I could understand this better, I may be able to help someone out and I may not feel so judged. I don't think I ever expect someone to understand my journey, but I should not then try to understand someone else's either. I can share my story in hopes that someone might be going through the same things and can get hope from my path.
Sometimes it does feel lonely. I have seen it all too often people pull away because they don't understand, they are scared of your circumstance, or because you have changed. However, we must remember we all go through seasons and God gives us the blessing of true friends. God is also always there for us. He will never leave us nor forsake us. Mary and Elizabeth in the Bible were given similar circumstances and they could support one another. While God is the ultimate hope, it never hurts to have earthly friends for support and help.
But sometimes I forget that I was chosen for this journey and not someone else. I am quick to judge and pass judgment. I am quick to feel alone and I try to handle things on my own. I forget I have the ultimate friend, I have unconditional love, I have forgiveness, grace, mercy, discipline, and if I am willing to obey Him, He is willing to bless me.
On this journey, I was chosen to learn certain things, not anyone else. On their journey, they were chosen to learn their own things. However, I can come alongside someone and be a friend, I can encourage and I can help. I have to remind myself of this because I can get wrapped up in my own circumstance very easily. I have to remember to continually seek to glorify God in every situation and circumstance. I also have to remember that I am only accountable for my actions, so I better continue to look at myself and see how I can improve on me.
And because I was chosen I am a better person, I have learned some amazing lessons, I have faced some very unthinkable situations, I have been tested to my max, and I have failed, and I have been blessed. I have changed who I am, how I think, how I love, and I have become a better person; all because I was chosen.
For me, it was one special child that God gave me so I could learn these lessons. Sometimes I have to remind myself over and over and over in the heat of pain, frustration, anger, exhaustion. But in the end, to see that smile, to feel her hug, and to watch her progress is such a blessing. It really is all I need. And when my eyes are rightly fixed on Him, I can look on even the hardest time and bring Him glory because He loved me enough to choose me to be right here!
Monday, November 24, 2014
A Heart of Gratitude
When I walked out the door on July 25, 2011 I knew things would change. I didn't know if my arms would be holding a baby, I didn't know if I would find myself on bed rest for a week, I didn't know if my baby would make it, I didn't even know the fullness of my baby's struggles as they did not have a diagnosis. I certainly did not know how I would change.
It is Thanksgiving heading into Christmas and everyone seems to be thankful and giving and caring. However, one thing that I have learned is a heart of gratitude. I would argue that it is more than being thankful, especially just around a season. It is more than just giving to make myself feel good. I would argue that a heart of gratitude is a lifestyle, is a way of living, a way of thinking.
Having Lydia has changed me, taught me, stretched me and even made me crazy! But I am not the same person I was when I walked out that door and I never will be that person again. We all experience things in life that completely change us, that make us stronger, that allow us to rely on God more, that restore our faith in humanity, that stretches us and changes us and molds us into the person God is creating us to be. Each little hurdle, each celebration, each trial, each time of discipline brings us closer to who He wants us to be; if we only allow Him.
When I reflect back and think about who I was prior to walking out the door on July 25, 2011 I cringe because that person is so far from who I am today. I was a very critical analyst of everyone who crossed my path, I very seldom thought of other people, I tried to gather everything for me and my family and stock piled it for a later date, I was constantly thinking of me and my family. It brings tears to my eyes that I could not see the cold bitter life I was leading.
However, God gave me a life changing event in many aspects on July 25, 2011. I did have a baby, but I was not holding that baby. I was wondering how she was doing, what she looked like, I couldn't even imagine a future for her. As they wheeled me to see her I cried because my arms ached. When they pushed me into her room I was able to peer into her little medical crib and saw wires and tubes attached to this precious life. Immediately a code was called and I was rushed back to my room, in another hospital. There was blood everywhere. It took them several hours for them to get me stable, but I wasn't able to see that little girl, she lay alone in a hospital room with no mom. How my heart ached.
That was only the beginning. There were surgeries and procedures. There was sickness that kept her away from many people. There were days that we never got sleep because we did not know if God would allow life for our daughter. There were days where the doctors scratched their heads, consulted, and were unsure of the next steps. There were many times when we saw life and death in our daughter. There were many times that prayer and hope was all that we had.
God allowed life for her and we were able to bring her home. Feeding issues set in. We were told that she would never eat, that it would be better to place her in an institution. How can I do that to my daughter? She is mine and she was made just for our family. We would be missing something if we put her in an institution. No, that was not an option.
Long days turned into long weeks, which turned into long months, and eventually into years to get this child to eat and eat enough to get her to gain weight. Struggle upon struggle we faced with her. Doctors upon doctors we discussed things with. Wait and see was usually our answer. Praying and hoping that God would allow her to continue with life.
When I left that day, I had a bag packed for the hospital. I had maybe a little more clothes that you usually would, but maybe just a week of maternity clothes and comfy clothes. When I called my mom to tell her there would be a baby that night, the girls quickly packed whatever they could find and came. A hotel would be their place to call home until we could find out more information. A conference in town made them bounce here and there until there was room for us at the Ronald McDonald House.
A home at last at the Ronald McDonald House. We had really nothing. While we had a home, it was not home anymore because my daughter was not there. I could not enter that house, it was just a placed that was filled with stuff, not meaning anything to me anymore. The house was under construction so there was really no finding stuff. Our neighbors and friends were busily trying to finish the project we had started. It was a place that was cold and so distance. A small room with two twin beds, a small bathroom, and a tiny closet was our new home. And it did not matter because that was the only place we could be together as one complete family.
As the weeks turned into months at the Ronald McDonald House the beautiful sunshine quickly started hiding more and more. The leaves started showering us with a beautiful picture show every day and then there were no leaves on the trees anymore. The wind howled and blew and the snow flew. None of us had stuff to wear and I could not bring myself to that place that stored all of my once precious treasures, the place I once called home.
There were people all over that were praying for us, that were providing gas cards for my husband to make a two hour commute one way to work. There were people in our new community that supported the Ronald McDonald house and provided all kinds of needs. There was a school that we were now part of and the most gracious of people who offered their houses for the many holidays we were there, who cooked us meals, who included my children in play dates and parties. There were acts of kindness that were beyond my imagination that complete strangers would do for someone else.
My heart was being changed in ways that I could not explain. Gratitude I have come to learn is not just something that you do, it is a lifestyle. When my eyes are fixed upon God I am not thinking about myself and I am serving other people. I am looking for ways to be the hands and feet of God. It is so amazing and a huge lifestyle change. It has also become a way to be content and happy. And it is not just an outward appearance but an inward change.
I have learned that things are just things. Being in the hospital (and at the Ronald McDonald House) during a Holiday really makes you learn about what's important. I remember one of the best Thanksgiving's we have had as a family. The girls put a blanket on the floor of the hospital and played Cootie with their sister, we talked to a cardiologist about Lydia's Open Heart Surgery she would be having in three days, we prepared a feast for the nurses on the floor, and the girls hand delivered flowers they had made for all of the nurses. We were so thankful for those nurses and that is what it is really all about.
I remember Christmas. Lydia had just had Open Heart Surgery and was intubated and recovering. I remember shopping that year and it was so different. I would have paid any amount of money to buy health. But that is not possible. Instead I learned a lot about faith and was thankful for the breath of life our family had that day. While we had gotten a few gifts, it was about the memories, the relationships, and the time we spent together. I remember we got Gyro bowls for the girls. Our nurse Kathy gave them ice cream in them. When the medical director came in our room to talk with us, she asked if the bowls actually worked. Just like clock work, the girls tipped them upside down while holding the sides of the bowls and the ice cream dropped on the floor. We had a great laugh. It is in moments like that that mean the world.
Gratitude is more than a day of giving thanks, it is a lifestyle that changes you in ways you cannot imagine. Because of Lydia, because of this journey, I have been blessed enough to learn about it. I have experienced a change in life that takes the focus off of me and puts it on others. That is the only way that I can take care of my children and especially Lydia. What a blessing it has been.
Each day we have been given is a gift, it is a precious gift. I am so glad that I have been chosen to learn these lessons. Lydia drives me to the point of going crazy, but she has taught me some of the most precious life lessons ever. And I find it so amazing that such a young girl can teach such big things.
Life is precious and when we learn to live in the moment, celebrate every milestone, and take nothing for granted, it is such a beautiful thing. When we learn that relationships are the most important thing and are worth investing everything we have in, we are rich. God wants our time, He wants a relationship. I have learned this and I have been so blessed because of it. My time that I give to my girls and husband are never wasted.
May you have a most enjoyable Thanksgiving. May you be thankful right where you are at, no matter what your circumstance is. God bless you.
It is Thanksgiving heading into Christmas and everyone seems to be thankful and giving and caring. However, one thing that I have learned is a heart of gratitude. I would argue that it is more than being thankful, especially just around a season. It is more than just giving to make myself feel good. I would argue that a heart of gratitude is a lifestyle, is a way of living, a way of thinking.
Having Lydia has changed me, taught me, stretched me and even made me crazy! But I am not the same person I was when I walked out that door and I never will be that person again. We all experience things in life that completely change us, that make us stronger, that allow us to rely on God more, that restore our faith in humanity, that stretches us and changes us and molds us into the person God is creating us to be. Each little hurdle, each celebration, each trial, each time of discipline brings us closer to who He wants us to be; if we only allow Him.
When I reflect back and think about who I was prior to walking out the door on July 25, 2011 I cringe because that person is so far from who I am today. I was a very critical analyst of everyone who crossed my path, I very seldom thought of other people, I tried to gather everything for me and my family and stock piled it for a later date, I was constantly thinking of me and my family. It brings tears to my eyes that I could not see the cold bitter life I was leading.
However, God gave me a life changing event in many aspects on July 25, 2011. I did have a baby, but I was not holding that baby. I was wondering how she was doing, what she looked like, I couldn't even imagine a future for her. As they wheeled me to see her I cried because my arms ached. When they pushed me into her room I was able to peer into her little medical crib and saw wires and tubes attached to this precious life. Immediately a code was called and I was rushed back to my room, in another hospital. There was blood everywhere. It took them several hours for them to get me stable, but I wasn't able to see that little girl, she lay alone in a hospital room with no mom. How my heart ached.
That was only the beginning. There were surgeries and procedures. There was sickness that kept her away from many people. There were days that we never got sleep because we did not know if God would allow life for our daughter. There were days where the doctors scratched their heads, consulted, and were unsure of the next steps. There were many times when we saw life and death in our daughter. There were many times that prayer and hope was all that we had.
God allowed life for her and we were able to bring her home. Feeding issues set in. We were told that she would never eat, that it would be better to place her in an institution. How can I do that to my daughter? She is mine and she was made just for our family. We would be missing something if we put her in an institution. No, that was not an option.
Long days turned into long weeks, which turned into long months, and eventually into years to get this child to eat and eat enough to get her to gain weight. Struggle upon struggle we faced with her. Doctors upon doctors we discussed things with. Wait and see was usually our answer. Praying and hoping that God would allow her to continue with life.
When I left that day, I had a bag packed for the hospital. I had maybe a little more clothes that you usually would, but maybe just a week of maternity clothes and comfy clothes. When I called my mom to tell her there would be a baby that night, the girls quickly packed whatever they could find and came. A hotel would be their place to call home until we could find out more information. A conference in town made them bounce here and there until there was room for us at the Ronald McDonald House.
A home at last at the Ronald McDonald House. We had really nothing. While we had a home, it was not home anymore because my daughter was not there. I could not enter that house, it was just a placed that was filled with stuff, not meaning anything to me anymore. The house was under construction so there was really no finding stuff. Our neighbors and friends were busily trying to finish the project we had started. It was a place that was cold and so distance. A small room with two twin beds, a small bathroom, and a tiny closet was our new home. And it did not matter because that was the only place we could be together as one complete family.
As the weeks turned into months at the Ronald McDonald House the beautiful sunshine quickly started hiding more and more. The leaves started showering us with a beautiful picture show every day and then there were no leaves on the trees anymore. The wind howled and blew and the snow flew. None of us had stuff to wear and I could not bring myself to that place that stored all of my once precious treasures, the place I once called home.
There were people all over that were praying for us, that were providing gas cards for my husband to make a two hour commute one way to work. There were people in our new community that supported the Ronald McDonald house and provided all kinds of needs. There was a school that we were now part of and the most gracious of people who offered their houses for the many holidays we were there, who cooked us meals, who included my children in play dates and parties. There were acts of kindness that were beyond my imagination that complete strangers would do for someone else.
My heart was being changed in ways that I could not explain. Gratitude I have come to learn is not just something that you do, it is a lifestyle. When my eyes are fixed upon God I am not thinking about myself and I am serving other people. I am looking for ways to be the hands and feet of God. It is so amazing and a huge lifestyle change. It has also become a way to be content and happy. And it is not just an outward appearance but an inward change.
I have learned that things are just things. Being in the hospital (and at the Ronald McDonald House) during a Holiday really makes you learn about what's important. I remember one of the best Thanksgiving's we have had as a family. The girls put a blanket on the floor of the hospital and played Cootie with their sister, we talked to a cardiologist about Lydia's Open Heart Surgery she would be having in three days, we prepared a feast for the nurses on the floor, and the girls hand delivered flowers they had made for all of the nurses. We were so thankful for those nurses and that is what it is really all about.
I remember Christmas. Lydia had just had Open Heart Surgery and was intubated and recovering. I remember shopping that year and it was so different. I would have paid any amount of money to buy health. But that is not possible. Instead I learned a lot about faith and was thankful for the breath of life our family had that day. While we had gotten a few gifts, it was about the memories, the relationships, and the time we spent together. I remember we got Gyro bowls for the girls. Our nurse Kathy gave them ice cream in them. When the medical director came in our room to talk with us, she asked if the bowls actually worked. Just like clock work, the girls tipped them upside down while holding the sides of the bowls and the ice cream dropped on the floor. We had a great laugh. It is in moments like that that mean the world.
Gratitude is more than a day of giving thanks, it is a lifestyle that changes you in ways you cannot imagine. Because of Lydia, because of this journey, I have been blessed enough to learn about it. I have experienced a change in life that takes the focus off of me and puts it on others. That is the only way that I can take care of my children and especially Lydia. What a blessing it has been.
Each day we have been given is a gift, it is a precious gift. I am so glad that I have been chosen to learn these lessons. Lydia drives me to the point of going crazy, but she has taught me some of the most precious life lessons ever. And I find it so amazing that such a young girl can teach such big things.
Life is precious and when we learn to live in the moment, celebrate every milestone, and take nothing for granted, it is such a beautiful thing. When we learn that relationships are the most important thing and are worth investing everything we have in, we are rich. God wants our time, He wants a relationship. I have learned this and I have been so blessed because of it. My time that I give to my girls and husband are never wasted.
May you have a most enjoyable Thanksgiving. May you be thankful right where you are at, no matter what your circumstance is. God bless you.
Friday, November 7, 2014
A Stronger Choice
As a parent of a child with special needs I hear often about how strong I am. I hear about how God chooses the perfect family. I hear about how blessed I am. I see those greeting cards about how I can do anything because I am a mom who has a child with special needs. If this is the case, why do I feel so lost and confused? Why do I feel like I am the weakest person I know?
I don't have any answers. I will not pretend that I am something I am not. I know that right now I feel very lost. I feel in a place of complete confusion. The first couple of months with Lydia I was thrown into a world that was completely foreign to me. My daughter was sick, very sick. I researched and learned so many things that never interested me before. The only reason that I was doing this was because I needed to make a decision for my daughter. I loved her and I wanted to make the best decision possible. The only way that I could do that was to familiarize myself with things that were so unfamiliar. I had to step outside of my comfort zone and make a strong choice.
And now as we continue to deal with medical challenges, and challenges that are not so easy. There are many complexities to Lydia, her anatomy, and how we treat when she gets sick. There are many things that we have to balance. Things many people do not understand because they have not walked this journey. But added to this mix, we are now entering school and I don't know what the best is for her. Sometimes I wonder if the experts know the best for her. Sometimes I feel so confused and overwhelmed by it all. I want to do the very best for her and I am often left wondering what that is. But I push through and I make the strong choice to love her and continue to step further outside of my comfort zone.
I continue to live in a state that is completely foreign. I research, I read, I talk to people and I keep pushing towards that gut mommy feeling. It's a feeling that is hard to stand up against people who have MD at the end of their name or a Master's Degree, but I have found that has made all of the difference. "I am mom and I know her best and I think this is what should be done." That is a hard sentence for me. I have learned, however, that this is a very important piece of making decisions for her.
I live with this child every day. I take care of her every need. I sacrifice things for me, my husband, and my other girls for her. I choose to love her and this is how I know to do it, sacrificing for her. I don't wear a cape of any sort, I am not special and most days I am not strong. I was chosen for this journey but it is still my choice to live it out. It is the stronger choice I make every day to wake up and face the challenges that have been written for my life.
The stronger choice, in my opinion, is to keep fighting, to keep speaking up, to keep pushing for answers, to keep looking for the very best for my daughter. It is a choice, just like love is, that we make every day. There are no special needs super hero powers that are given to special needs families, or at least mine. I don't want someone to think that either.
However, because I make the choice to honor God through what He gave me, I am blessed. I am blessed in many ways. I have learned many lessons that have changed me, that affect who I am and how I handle myself. I am blessed because I get to see life through a different lens and it is a fun ride. I am blessed because I have learned the importance of celebrating every small milestone and embracing each moment. I am blessed because I have made the stronger choice. I am blessed because I have taken the road less traveled. It is true, that if it is worth it, it will be hard!
I am blessed too because my daughter gives me strength and she inspires me. She handles her life with grace and dignity. She loves without boundaries. She smiles through blood draws and she gives her sisters' hugs when they are down. She is more concerned with other people and their feelings, even when she is sick. She sees the souls of people and she has a twinkle in her eye that is contagious. She never complains about the many doctor visits and procedures, she makes the best of very situation. She inspires me for so many reasons and she makes it easy to keep choosing to make the stronger choice.
If I have learned one thing along our journey, it is that medicine is trial and error. When making decisions, you are your child's best advocate. They need your voice. You have an important element in every decision because you know them best. We have found this out with school placement, therapy, her health, and just how to treat her in general. She needs that voice and when I make the stronger choice, she wins.
I am not strong, I am actually very weak. Most days I don't want to get out of bed. Most days I whine and complain about the lot given to me. Most days I don't handle the stress of everything very well. However, most days I am completely inspired by her, most days I am blessed, and most days I just look at her and I feel energized. Making the stronger choice is the best thing I have done. No one said life was going to be easy, perfect, or awesome. But the little extra that Lydia gives to me makes me think I am in heaven.
I don't have any answers. I will not pretend that I am something I am not. I know that right now I feel very lost. I feel in a place of complete confusion. The first couple of months with Lydia I was thrown into a world that was completely foreign to me. My daughter was sick, very sick. I researched and learned so many things that never interested me before. The only reason that I was doing this was because I needed to make a decision for my daughter. I loved her and I wanted to make the best decision possible. The only way that I could do that was to familiarize myself with things that were so unfamiliar. I had to step outside of my comfort zone and make a strong choice.
And now as we continue to deal with medical challenges, and challenges that are not so easy. There are many complexities to Lydia, her anatomy, and how we treat when she gets sick. There are many things that we have to balance. Things many people do not understand because they have not walked this journey. But added to this mix, we are now entering school and I don't know what the best is for her. Sometimes I wonder if the experts know the best for her. Sometimes I feel so confused and overwhelmed by it all. I want to do the very best for her and I am often left wondering what that is. But I push through and I make the strong choice to love her and continue to step further outside of my comfort zone.
I continue to live in a state that is completely foreign. I research, I read, I talk to people and I keep pushing towards that gut mommy feeling. It's a feeling that is hard to stand up against people who have MD at the end of their name or a Master's Degree, but I have found that has made all of the difference. "I am mom and I know her best and I think this is what should be done." That is a hard sentence for me. I have learned, however, that this is a very important piece of making decisions for her.
I live with this child every day. I take care of her every need. I sacrifice things for me, my husband, and my other girls for her. I choose to love her and this is how I know to do it, sacrificing for her. I don't wear a cape of any sort, I am not special and most days I am not strong. I was chosen for this journey but it is still my choice to live it out. It is the stronger choice I make every day to wake up and face the challenges that have been written for my life.
The stronger choice, in my opinion, is to keep fighting, to keep speaking up, to keep pushing for answers, to keep looking for the very best for my daughter. It is a choice, just like love is, that we make every day. There are no special needs super hero powers that are given to special needs families, or at least mine. I don't want someone to think that either.
However, because I make the choice to honor God through what He gave me, I am blessed. I am blessed in many ways. I have learned many lessons that have changed me, that affect who I am and how I handle myself. I am blessed because I get to see life through a different lens and it is a fun ride. I am blessed because I have learned the importance of celebrating every small milestone and embracing each moment. I am blessed because I have made the stronger choice. I am blessed because I have taken the road less traveled. It is true, that if it is worth it, it will be hard!
I am blessed too because my daughter gives me strength and she inspires me. She handles her life with grace and dignity. She loves without boundaries. She smiles through blood draws and she gives her sisters' hugs when they are down. She is more concerned with other people and their feelings, even when she is sick. She sees the souls of people and she has a twinkle in her eye that is contagious. She never complains about the many doctor visits and procedures, she makes the best of very situation. She inspires me for so many reasons and she makes it easy to keep choosing to make the stronger choice.
If I have learned one thing along our journey, it is that medicine is trial and error. When making decisions, you are your child's best advocate. They need your voice. You have an important element in every decision because you know them best. We have found this out with school placement, therapy, her health, and just how to treat her in general. She needs that voice and when I make the stronger choice, she wins.
I am not strong, I am actually very weak. Most days I don't want to get out of bed. Most days I whine and complain about the lot given to me. Most days I don't handle the stress of everything very well. However, most days I am completely inspired by her, most days I am blessed, and most days I just look at her and I feel energized. Making the stronger choice is the best thing I have done. No one said life was going to be easy, perfect, or awesome. But the little extra that Lydia gives to me makes me think I am in heaven.
Saturday, October 25, 2014
Real Awareness
I was preparing food in the concessions stand for the girl's volleyball. It was crazy busy and we were a man down. I have to say we were a little unprepared. One of the girl's from the team came out and said "Mrs. Spoor, you are needed out on the court." I washed my hands and walked into the gym. Our principal was talking about Down syndrome. I did not think too much of it since we were having a Dig 4 Down syndrome night.
Catching me completely off guard, I heard, Mrs. Spoor and Lydia would you come to the center of the court? I scooped up Lydia and off we went. They were honoring Lydia. The senior from the volleyball team came out and gave Lydia a rose. She smiled and cheered with delight. She went to the principal to get closer to the microphone. Typically, when given a chance, she will sing and chat away into the microphone. Not this time.
However, when the principal said it was time to play volleyball, she raised her rose above her head and shook it and giggled again. It was a true humbling experience that the entire school would honor this little girl. That this little girl was so loved and respected. That the volleyball team would want to raise awareness and money for Down syndrome.
A couple months ago the coach of the volleyball team had this great idea of doing Dig 4 Down syndrome. I know that a lot of teams wear pink for Breast Cancer Awareness, however, that does not personally affect anyone at the school. It also seems to be a bit of a fad. It is amazing to raise so much awareness. But for me, Down syndrome is personal, it affects my family. We participate in the Down syndrome awareness walk (we even did two this year) and I write about Down syndrome and I have a Facebook page highlighting Lydia's achievements. I never imagined that our school would want to create awareness too!
A couple years ago, upon returning from our prolonged experience in the hospital with Lydia, we knew that private school was the best option for our family. There are several reasons why, but having an education that is Christ-centered was very important. We searched high and low for a school that we could financially afford (we had some other kids coming up on the horizion) and we wanted a school that would take Lydia.
After touring many schools, we found one that felt like home. It was a bonus too that they were willing to take Lydia. And they were not just willing to take her, they wanted her there. We keep evaluating how well she is doing and if this will work out, but so far, so good. I do think that it makes all of the difference that Lydia is with her sisters, she knows she is in a place where she is wanted, and her disability is not center stage. The bar is set high and she is rising to it. They understand her strengths and capitalize on that.
I can't say enough about this wonderful school. Such an amazing thing that they have done for our family and especially for Lydia. I think that it is great that the coach recognized that Down syndrome is something that directly impacts these students and chose to highlight that!
We were able to put up facts all around to educate others about Down syndrome. We were able to sell T-Shirts to continue to create awareness about Down syndrome and we were able to expose a lot of people to Down syndrome. The best way to create awareness is to face it head on. Lydia walked around giving high fives, smiling and giggling. It take a moment for her to capture your heart, having you smile and realizing that she is more alike than different.
As a team, a school, and a community, there was a lot of money raised. It will go towards a local Down syndrome chapter where all of the money stays and supports families like ours. That money will give back to the community, help families out and make a real impact.
What a great idea to show the volleyball team the importance of serving others, having fun, and helping others out. It was a win all the way around.
Full inclusion is an important thing. We are so blessed that Lydia is where she is at. We are even more blessed that our school rallies behind her and is not afraid to show her support. I have to say that being part of this event was very humbling and really gave me encouragement. Inclusion is important for everyone and makes all students better. These lessons are ones that cannot be taught, they must be learned. What a great thing for all involved! We are in the right place.
Thanks Trinity Baptist School for all of your support and love for Lydia. Thank you to Miss Leeds for the great idea and implementation for Dig 4 Down syndrome. Thank you Mr. Shaeffer for your support and encouragement to everyone. And thank you to the volleyball team for playing a very hard fought battle and loving Lydia! Way to go Patriots!
Catching me completely off guard, I heard, Mrs. Spoor and Lydia would you come to the center of the court? I scooped up Lydia and off we went. They were honoring Lydia. The senior from the volleyball team came out and gave Lydia a rose. She smiled and cheered with delight. She went to the principal to get closer to the microphone. Typically, when given a chance, she will sing and chat away into the microphone. Not this time.
However, when the principal said it was time to play volleyball, she raised her rose above her head and shook it and giggled again. It was a true humbling experience that the entire school would honor this little girl. That this little girl was so loved and respected. That the volleyball team would want to raise awareness and money for Down syndrome.
A couple months ago the coach of the volleyball team had this great idea of doing Dig 4 Down syndrome. I know that a lot of teams wear pink for Breast Cancer Awareness, however, that does not personally affect anyone at the school. It also seems to be a bit of a fad. It is amazing to raise so much awareness. But for me, Down syndrome is personal, it affects my family. We participate in the Down syndrome awareness walk (we even did two this year) and I write about Down syndrome and I have a Facebook page highlighting Lydia's achievements. I never imagined that our school would want to create awareness too!
A couple years ago, upon returning from our prolonged experience in the hospital with Lydia, we knew that private school was the best option for our family. There are several reasons why, but having an education that is Christ-centered was very important. We searched high and low for a school that we could financially afford (we had some other kids coming up on the horizion) and we wanted a school that would take Lydia.
After touring many schools, we found one that felt like home. It was a bonus too that they were willing to take Lydia. And they were not just willing to take her, they wanted her there. We keep evaluating how well she is doing and if this will work out, but so far, so good. I do think that it makes all of the difference that Lydia is with her sisters, she knows she is in a place where she is wanted, and her disability is not center stage. The bar is set high and she is rising to it. They understand her strengths and capitalize on that.
I can't say enough about this wonderful school. Such an amazing thing that they have done for our family and especially for Lydia. I think that it is great that the coach recognized that Down syndrome is something that directly impacts these students and chose to highlight that!
We were able to put up facts all around to educate others about Down syndrome. We were able to sell T-Shirts to continue to create awareness about Down syndrome and we were able to expose a lot of people to Down syndrome. The best way to create awareness is to face it head on. Lydia walked around giving high fives, smiling and giggling. It take a moment for her to capture your heart, having you smile and realizing that she is more alike than different.
As a team, a school, and a community, there was a lot of money raised. It will go towards a local Down syndrome chapter where all of the money stays and supports families like ours. That money will give back to the community, help families out and make a real impact.
What a great idea to show the volleyball team the importance of serving others, having fun, and helping others out. It was a win all the way around.
Full inclusion is an important thing. We are so blessed that Lydia is where she is at. We are even more blessed that our school rallies behind her and is not afraid to show her support. I have to say that being part of this event was very humbling and really gave me encouragement. Inclusion is important for everyone and makes all students better. These lessons are ones that cannot be taught, they must be learned. What a great thing for all involved! We are in the right place.
Thanks Trinity Baptist School for all of your support and love for Lydia. Thank you to Miss Leeds for the great idea and implementation for Dig 4 Down syndrome. Thank you Mr. Shaeffer for your support and encouragement to everyone. And thank you to the volleyball team for playing a very hard fought battle and loving Lydia! Way to go Patriots!
Friday, October 10, 2014
Insert Generic Title for Down Syndrome Awareness Month
It is October 10. 10 days into Down syndrome awareness month. This is my first post. Last year I blogged every day for 31 days (31 for 21). I have seen my Facebook page lit up with posts about Down syndrome. Something has stopped me from writing, from posting a whole lot (I am sure I still post quite a bit). I enjoy seeing the posts and I really want to educate and make a difference.
However, after my last encounter of feeling as though I needed to defend why I had my daughter, I have paused to reflect. I have read the comments as my blog was shared and people weighed in. I was not offended, we all have our own opinion. I just took time to reflect. I asked myself if I did the right thing by walking away or should I have educated the person? For me, the right thing was to walk away. I don't have to defend why I had Lydia and I don't have to force her upon people. I have understood that my words will not change everyone's opinions or behaviors, and I am OK with that. But I also recognize that I don't have to be in a situation where I have to hear demeaning comments about my daughter, walking away with a smile I think sends a loud enough message for me!
And in the past couple of weeks, I have seen my daughter do the unthinkable and become very ill. This is the life we live, this is who she is. We have reached the 3 year post op anniversary of her surgery that connected her, that allowed her to eat. On that same day she preformed in front of many grandparents for the very first time. She is completely inclusive in the private school that our other girls attend. There were times that I never thought that they would all be together, much less all sing together. I did everything I could to choke back the tears. She was amazing (if you want to see the video you can go to www.facebook.com/teamlydibug). I was told she would never amount to anything and she should be institutionalized. She did better than most of her peers (speech or no speech), she put her whole heart into it and it was great! My miracle!
And later that night Lydia fell ill. While she did not have to make a return appearance to the hospital, I am pretty sure that this is the worse she ever looked. She lost a lot of weight and when she looked me in the eye, the illness had stolen her twinkle. It is exhausting rocking a sick child, wondering if she will make it through, and putting all of your needs aside for your child. However, when the twinkle starts to come back, it is a huge celebration! There is nothing that can describe that feeling.
I have been looking at the posts and seeing all of these cuties who rock a little extra. See, in my mind, I can't begin to understand why people think that Lydia's life is less than the next person. I can't begin to wrap my mind around why people think they can determine life based on a label (because after all, a diagnosis is just a label, it can't describe the person either). I know you have heard it before, what if we all came with a prenatal label that would tell us what we would do in life. What if I knew that I was going to get breast cancer, would my life be less valuable because I would incur medical bills and I would have to fight to stay alive, I would have ongoing medical needs? Absurd! What difference does it make if a person is born sick or gets sick during the course of their life? I have come to realize that those labels help shape us to become the people we are today. And those labels certainly cannot determine the quality of life, the kind of person they will be, or really anything about that person.
As Lydia put a challenge out, educate yourself and get to know someone with Down syndrome, I would like to challenge you to that as well. Our fears and preconceptions rob us from blessings. Think back to high school and that heart throb. What kept you from asking him out? What kept you from that cute "nerd" who sat in the front of the classroom? Those labels, I am sure, do not define who they are today?
Down syndrome is not the first defect that has a label. There are all kinds of things in society that have labels. Some are good and some are bad. We must first get to know the person. We must first be educated on things. It is only then we can understand the blessing we are missing. There are a lot of wrong facts out there about Down syndrome. The only way you will know the entire story is to get to know the person.
Maybe that is one of the biggest blessings that I have learned on this journey. I have learned to look past the things that society says are not socially acceptable. It is only then I can have some of the best friendships and relationships. My children are better girls because they know how to look past the labels. They get to know people for who they are on the inside. Labels inform us, they do not define us.
Just as my title on this blog is generic, the message is too! I think this is what we all hope for as parents. Get to know my kid and accept them for who they are. In Lydia's case part of her is Down syndrome and medical issues. However, most of her is love, goofiness, determination, friendship, caring, giving, and making others laugh. There is so much about her that Down syndrome cannot describe.
For Down syndrome awareness month, Lydia's challenge is to educate yourself and get to know someone with Down syndrome. It will change you for the better, it will change our communities, and it will reduce the number of times that parents have to defend why they chose life for their child with Down syndrome. I know not everyone will accept the challenge, will have the same opinions as me, but if we can respect one another by being educated, we are on a great step forward!
However, after my last encounter of feeling as though I needed to defend why I had my daughter, I have paused to reflect. I have read the comments as my blog was shared and people weighed in. I was not offended, we all have our own opinion. I just took time to reflect. I asked myself if I did the right thing by walking away or should I have educated the person? For me, the right thing was to walk away. I don't have to defend why I had Lydia and I don't have to force her upon people. I have understood that my words will not change everyone's opinions or behaviors, and I am OK with that. But I also recognize that I don't have to be in a situation where I have to hear demeaning comments about my daughter, walking away with a smile I think sends a loud enough message for me!
And in the past couple of weeks, I have seen my daughter do the unthinkable and become very ill. This is the life we live, this is who she is. We have reached the 3 year post op anniversary of her surgery that connected her, that allowed her to eat. On that same day she preformed in front of many grandparents for the very first time. She is completely inclusive in the private school that our other girls attend. There were times that I never thought that they would all be together, much less all sing together. I did everything I could to choke back the tears. She was amazing (if you want to see the video you can go to www.facebook.com/teamlydibug). I was told she would never amount to anything and she should be institutionalized. She did better than most of her peers (speech or no speech), she put her whole heart into it and it was great! My miracle!
And later that night Lydia fell ill. While she did not have to make a return appearance to the hospital, I am pretty sure that this is the worse she ever looked. She lost a lot of weight and when she looked me in the eye, the illness had stolen her twinkle. It is exhausting rocking a sick child, wondering if she will make it through, and putting all of your needs aside for your child. However, when the twinkle starts to come back, it is a huge celebration! There is nothing that can describe that feeling.
I have been looking at the posts and seeing all of these cuties who rock a little extra. See, in my mind, I can't begin to understand why people think that Lydia's life is less than the next person. I can't begin to wrap my mind around why people think they can determine life based on a label (because after all, a diagnosis is just a label, it can't describe the person either). I know you have heard it before, what if we all came with a prenatal label that would tell us what we would do in life. What if I knew that I was going to get breast cancer, would my life be less valuable because I would incur medical bills and I would have to fight to stay alive, I would have ongoing medical needs? Absurd! What difference does it make if a person is born sick or gets sick during the course of their life? I have come to realize that those labels help shape us to become the people we are today. And those labels certainly cannot determine the quality of life, the kind of person they will be, or really anything about that person.
As Lydia put a challenge out, educate yourself and get to know someone with Down syndrome, I would like to challenge you to that as well. Our fears and preconceptions rob us from blessings. Think back to high school and that heart throb. What kept you from asking him out? What kept you from that cute "nerd" who sat in the front of the classroom? Those labels, I am sure, do not define who they are today?
Down syndrome is not the first defect that has a label. There are all kinds of things in society that have labels. Some are good and some are bad. We must first get to know the person. We must first be educated on things. It is only then we can understand the blessing we are missing. There are a lot of wrong facts out there about Down syndrome. The only way you will know the entire story is to get to know the person.
Maybe that is one of the biggest blessings that I have learned on this journey. I have learned to look past the things that society says are not socially acceptable. It is only then I can have some of the best friendships and relationships. My children are better girls because they know how to look past the labels. They get to know people for who they are on the inside. Labels inform us, they do not define us.
Just as my title on this blog is generic, the message is too! I think this is what we all hope for as parents. Get to know my kid and accept them for who they are. In Lydia's case part of her is Down syndrome and medical issues. However, most of her is love, goofiness, determination, friendship, caring, giving, and making others laugh. There is so much about her that Down syndrome cannot describe.
For Down syndrome awareness month, Lydia's challenge is to educate yourself and get to know someone with Down syndrome. It will change you for the better, it will change our communities, and it will reduce the number of times that parents have to defend why they chose life for their child with Down syndrome. I know not everyone will accept the challenge, will have the same opinions as me, but if we can respect one another by being educated, we are on a great step forward!
Wednesday, September 24, 2014
Never Gets Easier
We walked into the Post Office hand in hand. She was babbling and I was looking for the mail drop. I picked her up and she dropped the letters into the slot. We headed towards the door to leave, still hand in hand. We walked out and the rocks next to the flower garden caught Lydia's eyes. She liked the sound of the rustling leaves too. She sat down and I just smiled. As she was playing there was an older gentleman passing us on the sidewalk.
He looked over at Lydia and then he looked at me and said that babies with Down syndrome don't deserve to live. I looked at him and smiled. He went on to say more, but I scooped Lydia into my arms. Her cute short arms wrapped my neck and her little fingers gently rubbed my shoulders. I hugged her and politely walked to the car.
It never gets easier to hear the words that your child does not deserve to live. It never gets easier to defend why you chose life for your child. It never gets easier hearing the snares and snickers of other people. It doesn't get easier.
But what I learned today is that I have grown as Lydia's mom. As much as those words crushed my entire spirit, I know that she is not defined by them. Lydia gets her worth from God because that is who created her just as she is. He designed her perfectly. He intended her to have 47 Chromosomes, slanted eyes, stubby fingers, low tone, a smile that is contagious, more love than she knows what to do with, a heart of gold, a sassy attitude, and a caring heart. She is exactly who she was created to be and she has just as much right to live as any of us.
As I drove home the tears filled my eyes. I looked back at my miracle and just was filled with love and gratitude for being put on this journey. I have changed because of her. While I am sure I will most likely hear some mean comments, I know the truth. I know that because of her, because of those 47 Chromosomes I am a better person. I know that our family is better because of her. I also know that most times people say those malicious comments because they are uneducated.
I also know that those kind of people don't deserve more than a smile from me. I no longer have to defend my child or our decision for bringing her into this world. It was never a decision for us, she was our child that God placed in our family. Down syndrome, medical issues, and a sassy sassy attitude. That was all meant for our family. The only decision we made was to have a child and God knew the perfect child to place in our family.
Hearing such horrible comments will NEVER get easier. Those comments are etched in my mind. In weak moments I hear those comments and I wish they were never uttered. However, it makes me want to share Lydia's story more and more. There are so many good people. Most of the time I hear how cute she is, how they want to take her home, what a ham she is. There are far more good comments than bad ones. The bad ones, however, are just so terrible. How could you think that she does not deserve to live? She has more life in her than most people I know. She has done so much good in this world already and she is only three years old. And I don't think that any parent wants to feel as though they have to defend why their child should live, it really is just not a fun thing.
As I write I am amazed at what a difference it makes when we get our self worth from God and not from this world. When we truly understand what we have, nothing can tear us down. There is still a huge sting from the words, but it has not broken me down and it won't. It has allowed me to want to keep spreading Lydia's story, keep creating awareness and keep loving her. I love taking her out in public and I love seeing the joy she brings to just about anyone she meets.
I guess you have to take the bad with the good. And while I will never get use to hearing things like this about my daughter and I know that it will never get easier, I am OK with it. I know that it will not tear me down, I know that it does not define my daughter, I know that it will not break me anymore.
Please help educate about Down syndrome. While we have come so far in acceptance, there is still so much to do. We can make better communities by educating one person at a time. And I know it is in how I react too to these comments that will make a difference. I can smile and move on with my day knowing that, other than a few tears, it will not ruin me. I will pray for that gentleman and I will continue spreading the joy that Lydia brings to me each and every day. I am so blessed to have her!
He looked over at Lydia and then he looked at me and said that babies with Down syndrome don't deserve to live. I looked at him and smiled. He went on to say more, but I scooped Lydia into my arms. Her cute short arms wrapped my neck and her little fingers gently rubbed my shoulders. I hugged her and politely walked to the car.
It never gets easier to hear the words that your child does not deserve to live. It never gets easier to defend why you chose life for your child. It never gets easier hearing the snares and snickers of other people. It doesn't get easier.
But what I learned today is that I have grown as Lydia's mom. As much as those words crushed my entire spirit, I know that she is not defined by them. Lydia gets her worth from God because that is who created her just as she is. He designed her perfectly. He intended her to have 47 Chromosomes, slanted eyes, stubby fingers, low tone, a smile that is contagious, more love than she knows what to do with, a heart of gold, a sassy attitude, and a caring heart. She is exactly who she was created to be and she has just as much right to live as any of us.
As I drove home the tears filled my eyes. I looked back at my miracle and just was filled with love and gratitude for being put on this journey. I have changed because of her. While I am sure I will most likely hear some mean comments, I know the truth. I know that because of her, because of those 47 Chromosomes I am a better person. I know that our family is better because of her. I also know that most times people say those malicious comments because they are uneducated.
I also know that those kind of people don't deserve more than a smile from me. I no longer have to defend my child or our decision for bringing her into this world. It was never a decision for us, she was our child that God placed in our family. Down syndrome, medical issues, and a sassy sassy attitude. That was all meant for our family. The only decision we made was to have a child and God knew the perfect child to place in our family.
Hearing such horrible comments will NEVER get easier. Those comments are etched in my mind. In weak moments I hear those comments and I wish they were never uttered. However, it makes me want to share Lydia's story more and more. There are so many good people. Most of the time I hear how cute she is, how they want to take her home, what a ham she is. There are far more good comments than bad ones. The bad ones, however, are just so terrible. How could you think that she does not deserve to live? She has more life in her than most people I know. She has done so much good in this world already and she is only three years old. And I don't think that any parent wants to feel as though they have to defend why their child should live, it really is just not a fun thing.
As I write I am amazed at what a difference it makes when we get our self worth from God and not from this world. When we truly understand what we have, nothing can tear us down. There is still a huge sting from the words, but it has not broken me down and it won't. It has allowed me to want to keep spreading Lydia's story, keep creating awareness and keep loving her. I love taking her out in public and I love seeing the joy she brings to just about anyone she meets.
I guess you have to take the bad with the good. And while I will never get use to hearing things like this about my daughter and I know that it will never get easier, I am OK with it. I know that it will not tear me down, I know that it does not define my daughter, I know that it will not break me anymore.
Please help educate about Down syndrome. While we have come so far in acceptance, there is still so much to do. We can make better communities by educating one person at a time. And I know it is in how I react too to these comments that will make a difference. I can smile and move on with my day knowing that, other than a few tears, it will not ruin me. I will pray for that gentleman and I will continue spreading the joy that Lydia brings to me each and every day. I am so blessed to have her!
Friday, September 19, 2014
Affected
We all go through things in life that affect us, that change us, that shape us and mold us. We are affected by a trial or a crisis or a change in direction. We are affected by one decision that we make or someone else makes. We are even affected by those around us, their behaviors and decisions and actions. We are affected by a sickness of ourselves, our children, our loved ones, we are affected by an unexpected diagnosis.
As I was thinking (something that I have been doing a lot of lately), I realized that just because I have been affected, does not make that a bad things. Actually, I have challenged myself to see it as something as a positive. I have been affected by many things, but does that make it a bad thing?
Absolutely not! I have been affected by Down syndrome and I am better because of it. My daughter has been affected by Down syndrome and that is who she is...and I LOVE IT. I have been affected by many things in my life and I choose to look at it as a blessing (now anyways) rather than a burden, a tragedy, or something bad.
Down syndrome has changed our entire family, has changed the way I look at things, who I am, how I deal with things, and the things that are important to me in my life. I would say that Down syndrome has affected me to my core in the very best possible ways. Down syndrome has affected the way I look at things, the way I behave, the way I give of my time and who I am as a person.
I am sure if someone from my past met me on the street and got to know who I was today, I would be almost completely different. I am sure that most people would say that. But if someone who knew me just three short years ago met me again, I am sure they would see someone completely different too. I have changed so much since Down syndrome has affected my life.
Many look at things that have affected our lives as something bad. For me, it was the best thing that could have ever happened. I have learned how to love deeper, love more unconditionally, I have learned how to stop and really smell the roses, how to appreciate the smallest of things, I have learned how to step up and accurately communicate something through lots of emotions, I have learned how to live life effectively under the most chaotic circumstances, I have learned how to give of myself more freely, I have learned the value of relationships and friendships, I have learned more about me, I have learned about miracles, I have learned about Faith and the goodness of God. I think that I could go on and on about what I have learned, but because my family was affected by Down syndrome I have become a whole new person.
I understand that for someone to truly understand what I am talking about, you have to be affected too. And since we are all affected by our own things, I share Lydia's story. I pray that her story may affect others and other will be impacted profoundly by her story. I realize that by sharing her story, I will not affect everyone's life and I am OK with that. But if we have affected someone's life, if someone has come to understand what a blessing Down syndrome is, it has been worth it.
There are so many days that I wish I had Lydia's disposition on life. She gets so excited over the simplest of things. I think we all could use more joy in our life (after all, God does call us to live with joy). I wish that I could be that comfortable in my own skin. I wish that I could let things roll off as she does. I wish that I could always be as thoughtful as her. I wish that I could be as determined as her. I wish that I could overcome as much as she has overcome. I wish that I would have known all of the positives Down syndrome has on your life, instead of the negative ones.
I have been affected and I am changing each day to be more like the person God wants me to be. He placed Lydia in our life for a very specific purpose. I am blessed by her. I love her to the moon and back and once more! I have been affected and I am sure happy that I was.
I am not saying that just because you are affected by something that everything is good. We had to endure some very tough things. But in those tough things we learned and we grew a lot. It was because of those tough things that we are better today. I look at my older girls and they are incredible. They went through things that I wish they would not have had to. However, it was in those tough lessons that they learned things that I could not have taught them. They are better because we were affected by this journey.
Even now as we battle some very tough things with Lydia's IEP, I am affected. I feel like some days I am living a nightmare. However, because I have been affected on this journey I can better handle these things. I have changed and I am now better equipped to deal with these things. And I am sure, through these troubles with the IEP, I will be affected once again and I will be better.
Down syndrome is part of what makes Lydia, Lydia. I would not change her for anything, even on the hard days. Life is not always easy, the course is sometimes very tough, but nothing worth doing is every easy!
As I was thinking (something that I have been doing a lot of lately), I realized that just because I have been affected, does not make that a bad things. Actually, I have challenged myself to see it as something as a positive. I have been affected by many things, but does that make it a bad thing?
Absolutely not! I have been affected by Down syndrome and I am better because of it. My daughter has been affected by Down syndrome and that is who she is...and I LOVE IT. I have been affected by many things in my life and I choose to look at it as a blessing (now anyways) rather than a burden, a tragedy, or something bad.
Down syndrome has changed our entire family, has changed the way I look at things, who I am, how I deal with things, and the things that are important to me in my life. I would say that Down syndrome has affected me to my core in the very best possible ways. Down syndrome has affected the way I look at things, the way I behave, the way I give of my time and who I am as a person.
I am sure if someone from my past met me on the street and got to know who I was today, I would be almost completely different. I am sure that most people would say that. But if someone who knew me just three short years ago met me again, I am sure they would see someone completely different too. I have changed so much since Down syndrome has affected my life.
Many look at things that have affected our lives as something bad. For me, it was the best thing that could have ever happened. I have learned how to love deeper, love more unconditionally, I have learned how to stop and really smell the roses, how to appreciate the smallest of things, I have learned how to step up and accurately communicate something through lots of emotions, I have learned how to live life effectively under the most chaotic circumstances, I have learned how to give of myself more freely, I have learned the value of relationships and friendships, I have learned more about me, I have learned about miracles, I have learned about Faith and the goodness of God. I think that I could go on and on about what I have learned, but because my family was affected by Down syndrome I have become a whole new person.
I understand that for someone to truly understand what I am talking about, you have to be affected too. And since we are all affected by our own things, I share Lydia's story. I pray that her story may affect others and other will be impacted profoundly by her story. I realize that by sharing her story, I will not affect everyone's life and I am OK with that. But if we have affected someone's life, if someone has come to understand what a blessing Down syndrome is, it has been worth it.
There are so many days that I wish I had Lydia's disposition on life. She gets so excited over the simplest of things. I think we all could use more joy in our life (after all, God does call us to live with joy). I wish that I could be that comfortable in my own skin. I wish that I could let things roll off as she does. I wish that I could always be as thoughtful as her. I wish that I could be as determined as her. I wish that I could overcome as much as she has overcome. I wish that I would have known all of the positives Down syndrome has on your life, instead of the negative ones.
I have been affected and I am changing each day to be more like the person God wants me to be. He placed Lydia in our life for a very specific purpose. I am blessed by her. I love her to the moon and back and once more! I have been affected and I am sure happy that I was.
I am not saying that just because you are affected by something that everything is good. We had to endure some very tough things. But in those tough things we learned and we grew a lot. It was because of those tough things that we are better today. I look at my older girls and they are incredible. They went through things that I wish they would not have had to. However, it was in those tough lessons that they learned things that I could not have taught them. They are better because we were affected by this journey.
Even now as we battle some very tough things with Lydia's IEP, I am affected. I feel like some days I am living a nightmare. However, because I have been affected on this journey I can better handle these things. I have changed and I am now better equipped to deal with these things. And I am sure, through these troubles with the IEP, I will be affected once again and I will be better.
Down syndrome is part of what makes Lydia, Lydia. I would not change her for anything, even on the hard days. Life is not always easy, the course is sometimes very tough, but nothing worth doing is every easy!
Saturday, August 30, 2014
Somethings Can't Be "Unetched"
I woke up sweating and my heart pounding as though it was being bounced down a basketball court. All my ears could hear was a monitor flat-lining. I sat up and was out of breath as my mind wandered back to the days in the hospital room. It seems like no matter how much time passes, those moments are etched in my mind.
I remember it as though it was yesterday and at times it hits me, usually when I am not prepared. Those images that are permanently etched in my mind play through my mind. I relive those moments over and over. These are the memories that I wish were "unetched" in my mind, but for some reason they are the ones that are the most vivid.
I was helping the nurse clean up Lydia and change her sheets. We were having problems with her breathing tube, but on rounds the doctors insisted that the X-Ray looked just as it should. They ignored both me and my husband's and the nurses pleas to re-tape the breathing tube. As we shifted her, her fragile body stopped rising and falling. Her perfect delicate skin started to turn gray and then blue. The monitor started on a slow musical decline that kept getting louder and louder and eventually there was just one note that played....BEEEEEEEEEEPPPPPP. There lay my daughter completely lifeless. I prayed and I asked the nurse how I could help. When she yelled for back up and the nurse said the doctors were in a meeting, I felt the temperature rise in my body and my voice yelling, but I was frozen still watching my lifeless child. The charge nurse leaped over the desk and mowed down the door where the doctors were. Within seconds, Lydia's room flooded with doctors and medical professionals. Her nurse sat there continuing to bag her while that horrific note played....BEEEEEEEEPPPPPPP.
After what seemed like an eternity, but most likely only moments, my husband joined my side. He had a puzzled look on his face until he looked at mine. I am sure I looked just as lifeless as my daughter. I prayed and begged and pleaded to bring my daughter back. This surely could not be happening to my daughter. I have had no time to play with her, she hasn't even left the hospital. What would her sisters think? How could we handle this?
Moments later, they were able to get a heartbeat and that annoying beeping never sounded so beautiful to me before. My baby was back. She was sick, but she was alive. Praising God for bringing my baby back, but knowing how fragile life is. In a moment life can be completely drained and only hope is left.
I remember other times in the hospital where we just had to hope and trust God that it was in His plan to allow my baby to live. I remember making a phone call to my husband in the middle of the night. There have been specialist after specialist in Lydia's room. We have given her every blood supply we can and she is not responding to anything. Her heart rate is so fast and she is eating through every kind of pain medication, sedation medication that we are able to give her. I believe there is nothing more we can do. What? We are in a hospital, you are suppose to be able to do something to help my child. As horrendous as it was to make that phone call, the two hour drive to the hospital must have been complete torture for my husband.
Once again, God saw fit in His plan to make the impossible, possible. There was a great doctor who stood by my side as I laid my daughter flat in the bed. This was something that we were forbidden to do. However, instantly, yes instantly, her heart rate came down 20 beats per minute and continued on a steady decline. The surgeon that was called in to attempt to reintubate, stood by her bedside and just shook his head. As she was monitored and watched very carefully all night, we witnessed a miracle.
These are moments that are completely etched into my mind and every time they make an appearance in my mind, I feel as though they are happening again for the very first time. Things that I wished were not etched into my mind, things that I wish that I could erase. Things that I know have changed me and made me a better person, but things that I don't ever want to relive again. As real as the pain is, there is hope that fills me and allows me to breath.
There are other moments that are etched in my mind too, that I wish were not there. The pain and the fear that filled my mind as I learned that Lydia would have Down syndrome. The myths and false thoughts that I believed would be my new life. The grief that I had for the loss of a child that was never meant to be. Lydia was meant to be in our family and I was so wrong to think those thoughts. I did not know better. I wish that I could "unetch" those thoughts, those moments, those fears from my mind. I wish that I would have embraced the diagnosis and saw it for what it was, a blessing from up above.
Once again, those things cannot be "unetched" but it has become part of our journey. I will most likely continue to relive these moments, experience this pain, but I have learned that I am stronger, that I am better because of these memories. Just as I am better because of Lydia. I am better because of Down syndrome. I would not change anything and I am not afraid of her future.
I have realized that I understand things differently than other people do. While I have not lost my daughter, I do understand the process more intimately. I have seen life and death in my daughter and I understand how fragile life really is. I try to embrace that on a daily basis. I understand what it is like to embrace something so passionately because I realize what a difference that can make in someone else's life. I wish everyone would dump a bucket of water over their head to bring awareness of Down syndrome, so people could truly understand how beautiful life is. Instead I will continue to share our story and create awareness one person at a time. Hopefully by sharing our story, I can help someone else as they face the diagnosis, hear the so call facts and grieve the loss of the child that was never meant for them. I hope they can understand what a true blessing Down syndrome is.
I can't change the past but I can embrace the future with hope, as the new person I have become because of those memories. And the best part of me reliving these memories last night, I rolled over and there was my beautiful daughter laying next to me. Her chest was rising and falling and her little hand landed on my face and she started playing with my hair. I wouldn't want it any other way! I am so blessed.
I remember it as though it was yesterday and at times it hits me, usually when I am not prepared. Those images that are permanently etched in my mind play through my mind. I relive those moments over and over. These are the memories that I wish were "unetched" in my mind, but for some reason they are the ones that are the most vivid.
I was helping the nurse clean up Lydia and change her sheets. We were having problems with her breathing tube, but on rounds the doctors insisted that the X-Ray looked just as it should. They ignored both me and my husband's and the nurses pleas to re-tape the breathing tube. As we shifted her, her fragile body stopped rising and falling. Her perfect delicate skin started to turn gray and then blue. The monitor started on a slow musical decline that kept getting louder and louder and eventually there was just one note that played....BEEEEEEEEEEPPPPPP. There lay my daughter completely lifeless. I prayed and I asked the nurse how I could help. When she yelled for back up and the nurse said the doctors were in a meeting, I felt the temperature rise in my body and my voice yelling, but I was frozen still watching my lifeless child. The charge nurse leaped over the desk and mowed down the door where the doctors were. Within seconds, Lydia's room flooded with doctors and medical professionals. Her nurse sat there continuing to bag her while that horrific note played....BEEEEEEEEPPPPPPP.
After what seemed like an eternity, but most likely only moments, my husband joined my side. He had a puzzled look on his face until he looked at mine. I am sure I looked just as lifeless as my daughter. I prayed and begged and pleaded to bring my daughter back. This surely could not be happening to my daughter. I have had no time to play with her, she hasn't even left the hospital. What would her sisters think? How could we handle this?
Moments later, they were able to get a heartbeat and that annoying beeping never sounded so beautiful to me before. My baby was back. She was sick, but she was alive. Praising God for bringing my baby back, but knowing how fragile life is. In a moment life can be completely drained and only hope is left.
I remember other times in the hospital where we just had to hope and trust God that it was in His plan to allow my baby to live. I remember making a phone call to my husband in the middle of the night. There have been specialist after specialist in Lydia's room. We have given her every blood supply we can and she is not responding to anything. Her heart rate is so fast and she is eating through every kind of pain medication, sedation medication that we are able to give her. I believe there is nothing more we can do. What? We are in a hospital, you are suppose to be able to do something to help my child. As horrendous as it was to make that phone call, the two hour drive to the hospital must have been complete torture for my husband.
Once again, God saw fit in His plan to make the impossible, possible. There was a great doctor who stood by my side as I laid my daughter flat in the bed. This was something that we were forbidden to do. However, instantly, yes instantly, her heart rate came down 20 beats per minute and continued on a steady decline. The surgeon that was called in to attempt to reintubate, stood by her bedside and just shook his head. As she was monitored and watched very carefully all night, we witnessed a miracle.
These are moments that are completely etched into my mind and every time they make an appearance in my mind, I feel as though they are happening again for the very first time. Things that I wished were not etched into my mind, things that I wish that I could erase. Things that I know have changed me and made me a better person, but things that I don't ever want to relive again. As real as the pain is, there is hope that fills me and allows me to breath.
There are other moments that are etched in my mind too, that I wish were not there. The pain and the fear that filled my mind as I learned that Lydia would have Down syndrome. The myths and false thoughts that I believed would be my new life. The grief that I had for the loss of a child that was never meant to be. Lydia was meant to be in our family and I was so wrong to think those thoughts. I did not know better. I wish that I could "unetch" those thoughts, those moments, those fears from my mind. I wish that I would have embraced the diagnosis and saw it for what it was, a blessing from up above.
Once again, those things cannot be "unetched" but it has become part of our journey. I will most likely continue to relive these moments, experience this pain, but I have learned that I am stronger, that I am better because of these memories. Just as I am better because of Lydia. I am better because of Down syndrome. I would not change anything and I am not afraid of her future.
I have realized that I understand things differently than other people do. While I have not lost my daughter, I do understand the process more intimately. I have seen life and death in my daughter and I understand how fragile life really is. I try to embrace that on a daily basis. I understand what it is like to embrace something so passionately because I realize what a difference that can make in someone else's life. I wish everyone would dump a bucket of water over their head to bring awareness of Down syndrome, so people could truly understand how beautiful life is. Instead I will continue to share our story and create awareness one person at a time. Hopefully by sharing our story, I can help someone else as they face the diagnosis, hear the so call facts and grieve the loss of the child that was never meant for them. I hope they can understand what a true blessing Down syndrome is.
I can't change the past but I can embrace the future with hope, as the new person I have become because of those memories. And the best part of me reliving these memories last night, I rolled over and there was my beautiful daughter laying next to me. Her chest was rising and falling and her little hand landed on my face and she started playing with my hair. I wouldn't want it any other way! I am so blessed.
Friday, August 22, 2014
It's Really Going To Happen?...You Are Really Going To Go To School?
I sit on my couch, completely paralyzed in disbelief that this is really happening. I stare at the bath rug, the rug grandma bought you when you came home from the hospital to help you sit, to help you roll, to help you with the foundational skills of getting stronger. It is the same bath rug that you will be taking to school on your first day. I am sure that you will have many happy memories on that rug, that you will learn lots of new things, and you will experience life outside of being with mommy. I know, it is a rug, get real...right? I never thought I would be so emotional over a silly rug!
I never allowed myself to get to this point where you would be going to school. It's a good thing, really it is. It means you are strong enough, you are ready, and you have many more skills to learn. I have been so wrapped up in your medical issues, your IEP, the day to day of adjusting to this new life with you and your sisters. I have been processing all that we have been through and I have been trying to play catch up with your sisters from time I missed out on with them. I have been trying to share your story in hopes to change other people's perspectives about Down syndrome. I have been busy helping others as a way to try to show my gratefulness of all those who gave to us when I was not sure how to put one foot in front of the next.
It is not that I never thought of your future, because I did. I was in the public school far before I needed to explaining to them who your are and what your needs would be. I researched and talked with people to figure out what the best transition route would be for you. I definitely have done my homework on it, but I never imagined what it would be like to get you ready and actually hand you off to someone other than a surgeon or doctor.
I talked with your teacher (I will just clarify, we have chose to send your to the private school your sisters attend for many reasons, and we are still working out the details of your IEP, but you will get home services) the other day. I am so impressed. Lydia, you will be having a teacher who wants you there, who is willing to work with you and me, and who is completely passionate about teaching. I have to say, for many reasons, this makes the process so much easier for me.
So as I prepare to get you ready for school, I feel lost. There is a feeling of overwhelming pride and excitement. There were many days that I thought that we would never be able to take you home, much less be at the point that we are sending you to school. There are days when I hope and pray that I can send you away to just get a little break. And then I feel guilty as I want to soak in every single moment with you and your sisters.
Last night was preview night. I had tears in my eyes as I saw your name tag. I saw your special mats on the shelf for changing you and sleeping. I looked around the room and saw an environment where you can learn and be safe. I have prayed for this moment but I have not prepared myself for it. I know that every child in that class, as well as the teacher, will learn so much from you this year. I know that you will really thrive in this environment and you need this. I know you will do great so forgive mommy if she is sad or seems unhappy for you. I am not. You are growing up before my very eyes, you are doing things I never thought were possible and I am so proud of you. You continue to amaze me every day and I am so full of joy.
Lydia, you are at home in this school. You enter the door with force and confidence. You walk down the hallways and wave to everyone, giving Pastor knucks every day. You sit on Miss Leeds' lap and go through her drawers. You sit in your sister's desks and pretend you belong there. You are not afraid of the high schoolers and often give them a run for their money. You belong there and that does this momma's heart good.
To find a school like this is such a blessing. To know that the staff truly wants her to be there and they really want to teach her. To know that in every decision they have her very best interest in mind, I really can't put into words what that means. I am glad because it has given me a peace as I accept that she really is going to school.
While we don't know if you will be healthy enough to make the year or how long you can handle in the classroom each day; I am happy you have this opportunity. I am excited to see your new skills, hopefully you will start talking soon and maybe even eating better. I am excited you will make many new friends and play with others in a more public setting.
It is really happening, you are really going off to school this year. I am excited, but I do have to say that I feel lost. And, mom will be at school every day you are. That was part of our agreement, just in case there is an issue with you choking or something. But you will walk in next Tuesday as a preschooler. You will sport your back pack on your back, packed with your lunch and snack. You will hang it up on your very own hook and walk into your room. You will soon forget about mom until I come to see you at the end of your day. I am sure you will embrace me and continue to be the HUGE stinker you have been lately. The few moments of quiet will be a welcomed change for me, but my heart will break just a little knowing my girls are growing up. Allowing them to soar and become the person God desired them to be is so hard.
I pray for you Lydia and your first day of school. I pray for you and your sister to grow up and be the girls God desires you to be. I pray that the choices that your daddy and I have made are just right for you. I pray that your school gives you the opportunity to soar, experience new things, grow, and have fun. It's really happening baby girl, you are really going off to school. I am excited to watch you grown and learn.
I will update after her first day!
I never allowed myself to get to this point where you would be going to school. It's a good thing, really it is. It means you are strong enough, you are ready, and you have many more skills to learn. I have been so wrapped up in your medical issues, your IEP, the day to day of adjusting to this new life with you and your sisters. I have been processing all that we have been through and I have been trying to play catch up with your sisters from time I missed out on with them. I have been trying to share your story in hopes to change other people's perspectives about Down syndrome. I have been busy helping others as a way to try to show my gratefulness of all those who gave to us when I was not sure how to put one foot in front of the next.
It is not that I never thought of your future, because I did. I was in the public school far before I needed to explaining to them who your are and what your needs would be. I researched and talked with people to figure out what the best transition route would be for you. I definitely have done my homework on it, but I never imagined what it would be like to get you ready and actually hand you off to someone other than a surgeon or doctor.
I talked with your teacher (I will just clarify, we have chose to send your to the private school your sisters attend for many reasons, and we are still working out the details of your IEP, but you will get home services) the other day. I am so impressed. Lydia, you will be having a teacher who wants you there, who is willing to work with you and me, and who is completely passionate about teaching. I have to say, for many reasons, this makes the process so much easier for me.
So as I prepare to get you ready for school, I feel lost. There is a feeling of overwhelming pride and excitement. There were many days that I thought that we would never be able to take you home, much less be at the point that we are sending you to school. There are days when I hope and pray that I can send you away to just get a little break. And then I feel guilty as I want to soak in every single moment with you and your sisters.
Last night was preview night. I had tears in my eyes as I saw your name tag. I saw your special mats on the shelf for changing you and sleeping. I looked around the room and saw an environment where you can learn and be safe. I have prayed for this moment but I have not prepared myself for it. I know that every child in that class, as well as the teacher, will learn so much from you this year. I know that you will really thrive in this environment and you need this. I know you will do great so forgive mommy if she is sad or seems unhappy for you. I am not. You are growing up before my very eyes, you are doing things I never thought were possible and I am so proud of you. You continue to amaze me every day and I am so full of joy.
Lydia, you are at home in this school. You enter the door with force and confidence. You walk down the hallways and wave to everyone, giving Pastor knucks every day. You sit on Miss Leeds' lap and go through her drawers. You sit in your sister's desks and pretend you belong there. You are not afraid of the high schoolers and often give them a run for their money. You belong there and that does this momma's heart good.
To find a school like this is such a blessing. To know that the staff truly wants her to be there and they really want to teach her. To know that in every decision they have her very best interest in mind, I really can't put into words what that means. I am glad because it has given me a peace as I accept that she really is going to school.
While we don't know if you will be healthy enough to make the year or how long you can handle in the classroom each day; I am happy you have this opportunity. I am excited to see your new skills, hopefully you will start talking soon and maybe even eating better. I am excited you will make many new friends and play with others in a more public setting.
It is really happening, you are really going off to school this year. I am excited, but I do have to say that I feel lost. And, mom will be at school every day you are. That was part of our agreement, just in case there is an issue with you choking or something. But you will walk in next Tuesday as a preschooler. You will sport your back pack on your back, packed with your lunch and snack. You will hang it up on your very own hook and walk into your room. You will soon forget about mom until I come to see you at the end of your day. I am sure you will embrace me and continue to be the HUGE stinker you have been lately. The few moments of quiet will be a welcomed change for me, but my heart will break just a little knowing my girls are growing up. Allowing them to soar and become the person God desired them to be is so hard.
I pray for you Lydia and your first day of school. I pray for you and your sister to grow up and be the girls God desires you to be. I pray that the choices that your daddy and I have made are just right for you. I pray that your school gives you the opportunity to soar, experience new things, grow, and have fun. It's really happening baby girl, you are really going off to school. I am excited to watch you grown and learn.
I will update after her first day!
Wednesday, August 13, 2014
Through Your Eyes
I sit here, rocking you, staring into your beautiful two-toned, almond-shaped eyes. I see so many stories through your eyes. I can remember the time in the hospital when you were hooked to tubes and wires and you had multiple machines pumping medicine into you. I remember you fighting to move your body, your mouth making a dry painful soft noise as a machine continued to breathe for you. I remember looking into your eyes. I remember seeing pain and suffering and I remember you looking at me telling me "Mom, please help me, make it go away." I remember feeling so helpless for you, I remember wanting to scoop you up out of that bed and hold you. I remember wanting to take the pain away, but remembering this is your lot and this was your battle to fight. I remember telling you I would hold you when I could and I would never leave your side. Those eyes, were tired and worn and exhausted. They showed pain and looked helpless. But you never lost your spirit, you never lost your fight and through it all, your eyes always had a twinkle of life in them.
As painful as some of those memories are to relive when I look into your eyes, they strengthen me and give me hope. Your eyes tell a joyful wonderful story of pain and sorrow, but of overcoming, of never losing hope. I love the beautiful stories your eyes have to tell. I love the twinkle that your eyes hold no matter what the struggle is for you.
I remember hearing of your diagnosis and reading more about it. One of the main physical characteristics of Down syndrome are eyes. They say that children, adults, people with Down syndrome will have almond shaped eyes. They say it like it is a bad thing. They say these eyes will define you, will let someone know that you have Down syndrome just by looking at you. These almond-shaped eyes will be a tell tale sign. I read of many moms and dads who don't like the almond-shaped eyes because they don't like what that means for their life, their future.
Looking back, I have to say that they were in part right. Your eyes do define you in many ways. I personally like the almond-shaped look on your face, it fits you just right. But looking into your eyes I see so much more. I see the stories you are yet to communicate, I see the battle wounds that you carry with you, I see the hope that you give to so many people, I see the love that you have for everyone you meet, I see the beauty that God created just for you. And through your eyes, the stories that you are telling, I get to see a whole new perspective on life. I am the blessed one because of those almond-shaped eyes. But sometimes it is looking beyond the physical appearance and looking right into those eyes and the stories that they tell.
When I am sad, you look directly into my eyes, lay your sweet head on my shoulder and gently caress my arm. You see stories in my eyes too. Without saying a word you communicate a love, a story, a passion, a gentleness to me. You understand me in a way that no one else does because you see something no one else can see. I truly believe that you see the soul of a person because you are not concerned by things of this world, by outward appearances, by what others tell you.
When I am struggling, when I am exhausted, when I feel worn, you look at me with such compassion and strength and tell me a story. You remind me that I am strong because He gives me strength. You remind me what faith can do, it can move mountains. You remind me how important hope is. You remind me of miracles. And most importantly, you remind me of the little stuff, the simple stuff, the most important stuff. You remind of love and not just any kind, the sacrificial love of Christ.
When I start to wonder how will I ever make it through? When I start to wonder why? When I start to get angry because people just don't understand? When I see the ignorance of people and their unwillingness to accept differences. When I start to doubt why I was given this long journey. When I start to feel alone and cry. When I feel like I just cannot go on. When I feel like no one understands. I look into your eyes. I see the stories that you have to tell, I remember the overcomer that you are, and I remember what God has done for me, I am once again filled with the strength that I need. I remember it is all because of your almond-shaped eyes.
When I look into your eyes and see how joyful you are and how full of life you are, it gives me comfort and peace. No matter how tough this journey has been or will get, we can overcome any obstacle that is put in our way. You have overcome so much, you have shown just how mighty and powerful our God is. With faith, hope, and perseverance we are tested, shaped and molded to be more like Christ. And your almond-shaped eyes remind me that the journey is not mine, it is not the one I planned. Things will not go the way that I want them to, the outcomes will most likely not be the ones I prayed for. However, they will be God's perfect plan, just as He gave you to me.
When the world would like to say that your almond-shaped eyes are a defect, I look into them and say they are perfect. They were created in the image of Christ, perfect and whole. So while someone may look at you and think something horrendous or be completely ignorant, I see the stories and the strength and the love that your eyes hold. You are teaching me, dear child, to look through life with a different lens. Personally, I like how the world looks through almond-shaped eyes so much better than what it looks like through oval-shaped ones.
As painful as some of those memories are to relive when I look into your eyes, they strengthen me and give me hope. Your eyes tell a joyful wonderful story of pain and sorrow, but of overcoming, of never losing hope. I love the beautiful stories your eyes have to tell. I love the twinkle that your eyes hold no matter what the struggle is for you.
I remember hearing of your diagnosis and reading more about it. One of the main physical characteristics of Down syndrome are eyes. They say that children, adults, people with Down syndrome will have almond shaped eyes. They say it like it is a bad thing. They say these eyes will define you, will let someone know that you have Down syndrome just by looking at you. These almond-shaped eyes will be a tell tale sign. I read of many moms and dads who don't like the almond-shaped eyes because they don't like what that means for their life, their future.
Looking back, I have to say that they were in part right. Your eyes do define you in many ways. I personally like the almond-shaped look on your face, it fits you just right. But looking into your eyes I see so much more. I see the stories you are yet to communicate, I see the battle wounds that you carry with you, I see the hope that you give to so many people, I see the love that you have for everyone you meet, I see the beauty that God created just for you. And through your eyes, the stories that you are telling, I get to see a whole new perspective on life. I am the blessed one because of those almond-shaped eyes. But sometimes it is looking beyond the physical appearance and looking right into those eyes and the stories that they tell.
When I am sad, you look directly into my eyes, lay your sweet head on my shoulder and gently caress my arm. You see stories in my eyes too. Without saying a word you communicate a love, a story, a passion, a gentleness to me. You understand me in a way that no one else does because you see something no one else can see. I truly believe that you see the soul of a person because you are not concerned by things of this world, by outward appearances, by what others tell you.
When I am struggling, when I am exhausted, when I feel worn, you look at me with such compassion and strength and tell me a story. You remind me that I am strong because He gives me strength. You remind me what faith can do, it can move mountains. You remind me how important hope is. You remind me of miracles. And most importantly, you remind me of the little stuff, the simple stuff, the most important stuff. You remind of love and not just any kind, the sacrificial love of Christ.
When I start to wonder how will I ever make it through? When I start to wonder why? When I start to get angry because people just don't understand? When I see the ignorance of people and their unwillingness to accept differences. When I start to doubt why I was given this long journey. When I start to feel alone and cry. When I feel like I just cannot go on. When I feel like no one understands. I look into your eyes. I see the stories that you have to tell, I remember the overcomer that you are, and I remember what God has done for me, I am once again filled with the strength that I need. I remember it is all because of your almond-shaped eyes.
When I look into your eyes and see how joyful you are and how full of life you are, it gives me comfort and peace. No matter how tough this journey has been or will get, we can overcome any obstacle that is put in our way. You have overcome so much, you have shown just how mighty and powerful our God is. With faith, hope, and perseverance we are tested, shaped and molded to be more like Christ. And your almond-shaped eyes remind me that the journey is not mine, it is not the one I planned. Things will not go the way that I want them to, the outcomes will most likely not be the ones I prayed for. However, they will be God's perfect plan, just as He gave you to me.
When the world would like to say that your almond-shaped eyes are a defect, I look into them and say they are perfect. They were created in the image of Christ, perfect and whole. So while someone may look at you and think something horrendous or be completely ignorant, I see the stories and the strength and the love that your eyes hold. You are teaching me, dear child, to look through life with a different lens. Personally, I like how the world looks through almond-shaped eyes so much better than what it looks like through oval-shaped ones.
Wednesday, July 30, 2014
Broken
I sit here in the quietness of the day. The kids are in the camper playing and tears are streaming down my face. I silently sit and listen to a story that is on my heart as I listen to God. I have come to Him today with a tired heart, with an exhausted body, with a weary soul. I find rest and comfort in Him and His Word. And how can it be that I still cannot completely rest in the comforts of His arms?
I find my thoughts drifting to "Why me?" "Why are we walking down this road yet, again?" "I don't think I can do this anymore." "What do you want to teach me this time, haven't I learned?" "Why my child?" "Why can't she be made whole again?" I pour out my heart and soul to our Maker looking for answers, but secretly I already know the answers; I just don't like them very much.
In trials, I truly believe that is when we find ourselves. I believe that we further become the people God has intended us to be. I heard a great analogy of that this past weekend. I am going to try my best to say it again. An airplane mechanic (not my husband) held up a wrench that was specific to a task that he needed done when fixing an airplane. It was shaved down, fragile, and tattered. It was shaped and molded to be exactly perfect for this one particular task that was very important to this mechanic. He also held up another wrench. This wrench was heavy duty and could get the job of taking off lug nuts from a car among many more. If you used the other wrench for pretty much any other task, it would surly break. We are all like that airplane mechanic's wrench. God has a specific purpose in mind for us. And, in order to accomplish that task, He must grind on us a little, polish us up, break us down so we can be effective and useful in one specific task. Sometimes it hurts us, sometimes it feels as if it would break us, sometimes we wear our battle wounds on the outside of our skin, and sometimes we are only needed at a very certain time.
"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, no lacking anything." James 1:2-4
Let me ask myself again these self pity questions that I mentioned above. I was chosen by God to be on this journey, that is why. We are walking down this path again because there is still so much God wants me to learn (maybe I have learned it and I need to test out my skills, or maybe it is just because it is the path that God has chosen and eventually I will find out the bigger picture He has written for my story). Lydia was created perfect in the image of God, so He sees nothing wrong with her. Yes, she has more trials than others, and much larger obstacles, but she is perfect in the image of God. I need to embrace those and give joy as we preserve and develop more faith.
As our surgeon said to us, Lydia was born broken. There is no way to put her back to the typically normal. What they did for her in all of her surgeries, was put her back together the best way that man knows how. She is still perfect in the image of God and it is exactly how God intended her to be. So while she lives on this earth, this fix will have to do. She will still have to continue to walk these medical issues and overcome other hurdles. However, God will not leave or forsake her, nor any of us.
And it is in this brokenness that we find true beauty. I truly believe that. When we are broken we are vulnerable and we grow in our faith (or we should be if we are truly looking to God), we are challenged and we end up changing. In Lydia's brokenness she is made beautiful. I see so much more now than I would have if she were not broken.
This is one reason, I believe, why children with Down syndrome are so beautiful. They are labeled and told what they will accomplish and what they won't accomplish before anyone knows. Parents who get the prenatal diagnosis often sit and wonder why, what will the future hold. Some of that joy of finding out your are expecting a new baby is robbed because of the brokenness that surrounds you. Or, if you just welcomed your baby with no expectation of a diagnosis of Down syndrome, your world seems to crash in around you, sometimes you may even feel that your child is broken just because of this diagnosis.
However, that is where the beauty comes in, God's beauty. When we rest in His arms, allow Him to take control and trust Him, we see that are children can accomplish far more than what we ever expected them to. Maybe it is because our expectations were lowered. However, they should not be, they are not broken, they are your children and they are beautiful; label or no label.
But it is in the brokenness that I understand just how beautiful life is. It is in the brokenness of our medical walk, that I see how beautiful Lydia's scares are, her challenges are. It is in the brokenness that I see beauty and that the impossible becomes possible.
I remind myself of this often. Especially when I long for the day Lydia will be able to eat a meal like very other kid. I bring myself back to reality. There are many kids that are dependent on tubes; just like Lydia once was. There was a point on this journey that Lydia was told she would never eat orally, and yet it has been a year and a half since the tube was pulled out and almost two years without being fed. So if we have problems here and there (or for very long periods of time), there is still great praise to give. And no matter how a child is fed, does not matter. I try to help myself minimize the problem, take my eyes off the circumstance, and fix my eyes upon Jesus.
Today I feel broken and empty and lost. Today I am struggling, yet when I take my eyes off my circumstance, and look to Jesus, things seem so much better. Whatever you are going through today, I pray for you. Whatever your circumstance is, know that God is there and will not forsake you. Even in times of troubles and hard, hard situations; God is there. Remember, God is using you and has a very specific purpose for you. Your purpose may only be for that moment when the perfect tool is needed, but without that tool, the job could not be accomplished. You have more worth that you know and when you fix your eyes upon Him, your circumstances seem to be small too.
Today a friend reached out to me about a family member receiving a diagnosis of Down syndrome. As I hastily started replying, I had to back up and just congratulate them on a perfect blessing. Sometimes that brokenness takes over and we forget to see the beauty. I pray that this family will start to understand the amazing journey they will be on and how wonderful it is. Scary? Yes, but so worth every moment!
And to that lady the other day who commented to me that she was glad she did not have my lot of having a child with Down syndrome...AMEN! I am glad she does not have that "burden" too, because Lydia is no burden to us. She is our child and we love her, just as we love our other children. The journey a little different, but an incredible learning experience! It is life changing and I am sure glad I allowed myself to be vulnerable and let change take place.
I find my thoughts drifting to "Why me?" "Why are we walking down this road yet, again?" "I don't think I can do this anymore." "What do you want to teach me this time, haven't I learned?" "Why my child?" "Why can't she be made whole again?" I pour out my heart and soul to our Maker looking for answers, but secretly I already know the answers; I just don't like them very much.
In trials, I truly believe that is when we find ourselves. I believe that we further become the people God has intended us to be. I heard a great analogy of that this past weekend. I am going to try my best to say it again. An airplane mechanic (not my husband) held up a wrench that was specific to a task that he needed done when fixing an airplane. It was shaved down, fragile, and tattered. It was shaped and molded to be exactly perfect for this one particular task that was very important to this mechanic. He also held up another wrench. This wrench was heavy duty and could get the job of taking off lug nuts from a car among many more. If you used the other wrench for pretty much any other task, it would surly break. We are all like that airplane mechanic's wrench. God has a specific purpose in mind for us. And, in order to accomplish that task, He must grind on us a little, polish us up, break us down so we can be effective and useful in one specific task. Sometimes it hurts us, sometimes it feels as if it would break us, sometimes we wear our battle wounds on the outside of our skin, and sometimes we are only needed at a very certain time.
"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, no lacking anything." James 1:2-4
Let me ask myself again these self pity questions that I mentioned above. I was chosen by God to be on this journey, that is why. We are walking down this path again because there is still so much God wants me to learn (maybe I have learned it and I need to test out my skills, or maybe it is just because it is the path that God has chosen and eventually I will find out the bigger picture He has written for my story). Lydia was created perfect in the image of God, so He sees nothing wrong with her. Yes, she has more trials than others, and much larger obstacles, but she is perfect in the image of God. I need to embrace those and give joy as we preserve and develop more faith.
As our surgeon said to us, Lydia was born broken. There is no way to put her back to the typically normal. What they did for her in all of her surgeries, was put her back together the best way that man knows how. She is still perfect in the image of God and it is exactly how God intended her to be. So while she lives on this earth, this fix will have to do. She will still have to continue to walk these medical issues and overcome other hurdles. However, God will not leave or forsake her, nor any of us.
And it is in this brokenness that we find true beauty. I truly believe that. When we are broken we are vulnerable and we grow in our faith (or we should be if we are truly looking to God), we are challenged and we end up changing. In Lydia's brokenness she is made beautiful. I see so much more now than I would have if she were not broken.
This is one reason, I believe, why children with Down syndrome are so beautiful. They are labeled and told what they will accomplish and what they won't accomplish before anyone knows. Parents who get the prenatal diagnosis often sit and wonder why, what will the future hold. Some of that joy of finding out your are expecting a new baby is robbed because of the brokenness that surrounds you. Or, if you just welcomed your baby with no expectation of a diagnosis of Down syndrome, your world seems to crash in around you, sometimes you may even feel that your child is broken just because of this diagnosis.
However, that is where the beauty comes in, God's beauty. When we rest in His arms, allow Him to take control and trust Him, we see that are children can accomplish far more than what we ever expected them to. Maybe it is because our expectations were lowered. However, they should not be, they are not broken, they are your children and they are beautiful; label or no label.
But it is in the brokenness that I understand just how beautiful life is. It is in the brokenness of our medical walk, that I see how beautiful Lydia's scares are, her challenges are. It is in the brokenness that I see beauty and that the impossible becomes possible.
I remind myself of this often. Especially when I long for the day Lydia will be able to eat a meal like very other kid. I bring myself back to reality. There are many kids that are dependent on tubes; just like Lydia once was. There was a point on this journey that Lydia was told she would never eat orally, and yet it has been a year and a half since the tube was pulled out and almost two years without being fed. So if we have problems here and there (or for very long periods of time), there is still great praise to give. And no matter how a child is fed, does not matter. I try to help myself minimize the problem, take my eyes off the circumstance, and fix my eyes upon Jesus.
Today I feel broken and empty and lost. Today I am struggling, yet when I take my eyes off my circumstance, and look to Jesus, things seem so much better. Whatever you are going through today, I pray for you. Whatever your circumstance is, know that God is there and will not forsake you. Even in times of troubles and hard, hard situations; God is there. Remember, God is using you and has a very specific purpose for you. Your purpose may only be for that moment when the perfect tool is needed, but without that tool, the job could not be accomplished. You have more worth that you know and when you fix your eyes upon Him, your circumstances seem to be small too.
Today a friend reached out to me about a family member receiving a diagnosis of Down syndrome. As I hastily started replying, I had to back up and just congratulate them on a perfect blessing. Sometimes that brokenness takes over and we forget to see the beauty. I pray that this family will start to understand the amazing journey they will be on and how wonderful it is. Scary? Yes, but so worth every moment!
And to that lady the other day who commented to me that she was glad she did not have my lot of having a child with Down syndrome...AMEN! I am glad she does not have that "burden" too, because Lydia is no burden to us. She is our child and we love her, just as we love our other children. The journey a little different, but an incredible learning experience! It is life changing and I am sure glad I allowed myself to be vulnerable and let change take place.
Thursday, July 17, 2014
Coming to Grips
To say that I have been struggling lately is probably an understatement. I have felt like there has been a story on my heart for awhile, but I don't know how to get it out. So many things that have run through my head, so many thoughts, so many emotions I have felt. However, there is one word that keeps coming to my mind. Trauma. I looked it up and it said 1. any physical damage to the body caused by violence or accident or fracture etc. 2. an emotional wound or shock often having long-lasting effects. I guess that seems to sum up some of what I have been feeling.
I am struggling with the birthdays of my daughters, Allison and Lydia. I wrote a letter to Allison yesterday and it felt good. I feel as though I have not been present in life for the past three years. And then, how could it be that Lydia will be three? Part of me is so excited because I never thought, due to all of her medical issues, that we would ever be celebrating three years with her. The other part of me, due to her medical issues, is just exhausted.
When I go through the memories in my mind, the last image of Allison is her holding her new sister. She was in a flowery dress and she looked beautiful. When Lydia put that dress on for the very first time, I could not believe it. I could not believe that we have come this far. I was sad because, in my mind, I have very limited memories of Allison for the past three years. There has been so much trauma that we all have over come, that I believe that I have allowed myself to not remember some stuff on purpose.
Besides the big birthdays that I have been struggling with, I am unsettled. I feel like God has big plans for me, but I feel as though I just need to be for awhile. Sometimes I forget why I write. I write for the soul purpose of healing, of releasing emotions. However, sometimes I feel jealous that my writing is not shared, that I don't impact people like other people do. I hate that I feel that way. I hate feeling jealous, especially over something simple.
I long to make an impact in the world. I have great ideas of helping, of raising money, of doing something that will really make an impact. However, I get lost. I don't know where to start or what to do. God has me right where He wants me to be, and I need to be comfortable with that. I need to be present right where I am at. I need to live my life according to Him and in a manner that will bring honor and glory to Him. Sometimes I get confused and I get caught up in what I want and not His Will for my life. It makes me feel very unsettled.
Sometimes I just cry because I can't quite comprehend everything that we have been through. I read stories of others who are in the hospital and going through hell and back. They are riding that roller coaster of emotions and feelings, of highs and lows. My heart breaks for them because I remember those days. They are etched in my mind and they will never go away. I remember seeing my baby blue and hearing the flat line and being so helpless as I watched everyone in slow motion try to save my baby. I remember making phone calls to my husband telling him to come home, they were unsure if Lydia would make it through the night. I remember having specialist upon specialist in our room, scratching their heads, unsure of what the next step would be. I remember waiting, praying, pleading, that she would survive the next moments. I remember the extreme stress and pressure. I remember our divided family. I also remember just going through the motions because you had to. You had no choice, sometimes there wasn't even enough time to cry. You just did because that is what you had to do. One foot in front of the other was all you could handle.
Coming home and adjusting again to a new life. Getting settled in your home that was now sprinkled with medical machines and medicine instead of pictures and toys. Finding your way in a world that seemed so familiar, yet so unfamiliar. Watching people who use to be your friends living their life just as they had planned, and you no longer had a place in their life. I remember that life seemed to stop for us, our path had abruptly come to a fork in the road, and we took the path that had been less traveled.
I think one of the hardest things I have to come to accept is how I have changed. My life does not resemble anything like our "pre-hospital" days. I am a much stronger believer. My faith has increased and that is who I am. I am nothing without my relationship with God. He was the One who saved me, who changed me, who carried me, who got me through this trauma.
The images that we lived through are etched in my mind and always will be; it's not something you forget. The trauma that we endured is close to my heart and still continues to have lasting effects.
I am starting to come to grips with this. It seems like some of the dust has settled, but I have recognized that it will never completely settle. As we thought things with Lydia were finally "good" she gets sick, the oxygen supplies sprinkle our home, the ugly comments when we are out in public are heard, the added stress of a sick child are felt, the house arrest (not going outside to play), and the constant worrying about your child; Are you doing the very best for them? These emotions and feelings are felt over and over, and this is just the way it will be on our path. This is our new path, it is our life, and as much as I fight it; it is good. This is our story, our path, our life and I would not trade it for anything.
We no longer live life on a whim, but we plan everything around Lydia and her needs. And that is OK. This life is OK. The trauma that we all experienced has changed us, challenged us, affected us, and will continue doing so; and that is OK. The people we have become is by God's design. We have not lived this path for nothing. God has given us a story, one to share because is it is ours. This is the life we live, these are the stories we live and that makes it beautiful because it is ours.
To put these words down on paper and breathe makes me feel so much better. To release these emotions that have been eating me up inside is so freeing. This is my story, this is what I have to tell today. Trauma is living out those injuries life has given to us. Our baby was created perfectly in God's image, He provided the medical resources to allow her to live this life, He empowered the perfect family to have her live with. In doing so, we all faced trauma of some sort and we live that out. We are changed by it, we have been affected by it and in the end, we have become better people by it.
I am struggling with the birthdays of my daughters, Allison and Lydia. I wrote a letter to Allison yesterday and it felt good. I feel as though I have not been present in life for the past three years. And then, how could it be that Lydia will be three? Part of me is so excited because I never thought, due to all of her medical issues, that we would ever be celebrating three years with her. The other part of me, due to her medical issues, is just exhausted.
When I go through the memories in my mind, the last image of Allison is her holding her new sister. She was in a flowery dress and she looked beautiful. When Lydia put that dress on for the very first time, I could not believe it. I could not believe that we have come this far. I was sad because, in my mind, I have very limited memories of Allison for the past three years. There has been so much trauma that we all have over come, that I believe that I have allowed myself to not remember some stuff on purpose.
Besides the big birthdays that I have been struggling with, I am unsettled. I feel like God has big plans for me, but I feel as though I just need to be for awhile. Sometimes I forget why I write. I write for the soul purpose of healing, of releasing emotions. However, sometimes I feel jealous that my writing is not shared, that I don't impact people like other people do. I hate that I feel that way. I hate feeling jealous, especially over something simple.
I long to make an impact in the world. I have great ideas of helping, of raising money, of doing something that will really make an impact. However, I get lost. I don't know where to start or what to do. God has me right where He wants me to be, and I need to be comfortable with that. I need to be present right where I am at. I need to live my life according to Him and in a manner that will bring honor and glory to Him. Sometimes I get confused and I get caught up in what I want and not His Will for my life. It makes me feel very unsettled.
Sometimes I just cry because I can't quite comprehend everything that we have been through. I read stories of others who are in the hospital and going through hell and back. They are riding that roller coaster of emotions and feelings, of highs and lows. My heart breaks for them because I remember those days. They are etched in my mind and they will never go away. I remember seeing my baby blue and hearing the flat line and being so helpless as I watched everyone in slow motion try to save my baby. I remember making phone calls to my husband telling him to come home, they were unsure if Lydia would make it through the night. I remember having specialist upon specialist in our room, scratching their heads, unsure of what the next step would be. I remember waiting, praying, pleading, that she would survive the next moments. I remember the extreme stress and pressure. I remember our divided family. I also remember just going through the motions because you had to. You had no choice, sometimes there wasn't even enough time to cry. You just did because that is what you had to do. One foot in front of the other was all you could handle.
Coming home and adjusting again to a new life. Getting settled in your home that was now sprinkled with medical machines and medicine instead of pictures and toys. Finding your way in a world that seemed so familiar, yet so unfamiliar. Watching people who use to be your friends living their life just as they had planned, and you no longer had a place in their life. I remember that life seemed to stop for us, our path had abruptly come to a fork in the road, and we took the path that had been less traveled.
I think one of the hardest things I have to come to accept is how I have changed. My life does not resemble anything like our "pre-hospital" days. I am a much stronger believer. My faith has increased and that is who I am. I am nothing without my relationship with God. He was the One who saved me, who changed me, who carried me, who got me through this trauma.
The images that we lived through are etched in my mind and always will be; it's not something you forget. The trauma that we endured is close to my heart and still continues to have lasting effects.
I am starting to come to grips with this. It seems like some of the dust has settled, but I have recognized that it will never completely settle. As we thought things with Lydia were finally "good" she gets sick, the oxygen supplies sprinkle our home, the ugly comments when we are out in public are heard, the added stress of a sick child are felt, the house arrest (not going outside to play), and the constant worrying about your child; Are you doing the very best for them? These emotions and feelings are felt over and over, and this is just the way it will be on our path. This is our new path, it is our life, and as much as I fight it; it is good. This is our story, our path, our life and I would not trade it for anything.
We no longer live life on a whim, but we plan everything around Lydia and her needs. And that is OK. This life is OK. The trauma that we all experienced has changed us, challenged us, affected us, and will continue doing so; and that is OK. The people we have become is by God's design. We have not lived this path for nothing. God has given us a story, one to share because is it is ours. This is the life we live, these are the stories we live and that makes it beautiful because it is ours.
To put these words down on paper and breathe makes me feel so much better. To release these emotions that have been eating me up inside is so freeing. This is my story, this is what I have to tell today. Trauma is living out those injuries life has given to us. Our baby was created perfectly in God's image, He provided the medical resources to allow her to live this life, He empowered the perfect family to have her live with. In doing so, we all faced trauma of some sort and we live that out. We are changed by it, we have been affected by it and in the end, we have become better people by it.
Wednesday, July 16, 2014
Happy Blurday Allison
Dear Allison,
Happy 6th Birthday my love! I can't believe where the time has gone. In my mind, time has frozen still. Somehow I don't remember you last birthdays. The past three years have seemed like a complete blur. As I sit to write you, the tears are flowing down my face and a picture of a three year old is etched in my mind. I want to so badly grab the past three years back and hold on to the moments. However, God has written different plans, and as painful as they are, I look at who you are today and I could not be anymore proud of you.
As your mom, I am hurt and I look at the past three years with a lot of pain and little memory. Somehow it has been a complete blur. However, God has given us this amazing summer where I feel like we have been able to make many memories, have the snuggles you so enjoy, and talk and laugh together. I feel as though my mind is once again working and I can now etch your beautiful, freckled covered nose, gorgeous blue eyes, long blond hair picture into my mind.
Three years ago you turned three, mom was pregnant and we were all scared about what was going to be happening. We knew that you would be welcoming a new sister, we knew that she was going to be sick, but we could not have prepared ourselves for the ride God wrote for us.
The sites and sounds and smells and fears and pains of three years ago are still so fresh in my mind. When I look at you, sometimes it is hard for me to see who you are today, I still see you as that little girl. I cry because I feel like I missed so much with you. I really have no clue where that time went. I know that I was doing as I needed to do, you were in loving arms, and mostly I was there. But I write you this letter to let you know how much I love you and how proud I am of you.
Three years ago we had your birthday party at the toy store in town. Mom was unable to drive and I was really not suppose to be out. Your grandma's and your aunt made that day possible. There were many loving friends who came to support us as well. We didn't know when mommy would be going to the hospital so we tried to take advantage of all those moments, we tried to soak up every last snuggle we could. I am so glad we did.
You were so excited to have your very first friend birthday party. You had picked out a gorgeous princess cake with your grandma. You were so excited. And moments after your party ended you left with your grandma. Mommy needed to have her rest. My arms were so empty, I wanted to continue to celebrate with you, I wanted that moment to never end. Your pony tail bopped around in the wind as you put your foot in grandma's van. I waved goodbye and tried not to show my tears.
Six short days later, grandma brought you back to the house. You were wearing the cutest little dress. Your face was so beautiful and you had a smile that lit up the room. I remember your hug. You strong arms wrapped around mommy's neck with your little hands patty my shoulders. Mommy and daddy were leaving for the hospital. We did not know if your sister would be born that day or if mommy would have to stay in the hospital. We were nervous and scared. You were so happy to be home and playing with all of your new toys from your birthday. You waved at me, told me you loved me, and said it was all going to be all right. I remember that day as if it were yesterday.
We ended up having your sister that night. Grandma and grandpa drove you to Milwaukee late that night and you swam and feel asleep in grandpa's arms. At 9:00 that night, Lydia was born and a new chapter in our life was beginning. It was scary, but nothing broke your smile. You were always thinking about other people. You gave me strength because I missed you so much.
I remember the next day, you walked into that hospital room. You had the cutest little flowered dress on. Your aunt gave it to you because you were growing out of your clothes and mommy was so busy she did not noticed. You were so shy. You saw mommy and ran to her. We showed you your new sister and you were shy. You did not want to leave your grandma's side. Eventually you warmed up and once you did, there was no separating you from your sister.
The next five months we spent more time apart then we did together. I tried so hard to be strong, but it tore me apart to see you hurt so much, to know that you had to spend so much time apart from me. All you wanted to do was snuggle, and believe me, that is all that mommy wanted to do too! This was just the beginning, but you were so strong and brave. God gave you two of the best grandma's who took such good care of you. He gave you cousins that kept you running and playing until all hours of the night and He gave you aunts that cared for you as if you were theirs.
Coming home was amazing. You took care of your sister like a pro. You were always there to give a helping hand and comfort the saddest of souls. I know there was never much time to be with just you, it seems as though Lydia's needs were always put before yours. As a mom, it is so hard; but I did my very best. As a mom, I was stretched so thin, but God gave us an entire community that helped you understand just how much you are loved, just how important you are.
I look at you today and I am so proud of who God made you. When I think of the past three years I often think of the pain and trauma our entire family endured, but you survived. Most times we talk about Lydia and what a fighter she is. I think you one too. You were behind the scenes and you often were left to the side. You did not complain or hide. You wore your smile, you showed your tears. You were a big girl when you should have been mommy's little girl.
But you are a better person because of this experience. You understand and care far beyond your years. You notice the smallest of details and you love so deep. It is not the road I would have picked for you, but I am so glad that God is the author of your path because you are one amazing girl.
I realize that we are on a journey with your sister, that her medical needs will always be there. But some how God has really brought all of us together. He has allowed me to see you for who you are today. The pain is still there, but I am so enjoying being your mom. I wanted to let you know how special this birthday is for me. I see you in that pretty little flowery dress holding your sister for the very first time. Your eyes lit up the room and you were the proudest sister ever. Today, you are one amazing little six year old, filled with love and compassion far beyond your years. Because of what you have done for you sister, she is wearing that dress today, looking up to you, learning from you, and wanting to be just like you. What an amazing role model you are!
I love you Allison. I am so proud to be your mom. Lydia has a GREAT big sister. Thanks for being so selfless and allowing us to grow together as a family. I can't wait to see what else God has in store for you as you continue to spread your wings and soar.
Love,
Mom
Happy 6th Birthday my love! I can't believe where the time has gone. In my mind, time has frozen still. Somehow I don't remember you last birthdays. The past three years have seemed like a complete blur. As I sit to write you, the tears are flowing down my face and a picture of a three year old is etched in my mind. I want to so badly grab the past three years back and hold on to the moments. However, God has written different plans, and as painful as they are, I look at who you are today and I could not be anymore proud of you.
As your mom, I am hurt and I look at the past three years with a lot of pain and little memory. Somehow it has been a complete blur. However, God has given us this amazing summer where I feel like we have been able to make many memories, have the snuggles you so enjoy, and talk and laugh together. I feel as though my mind is once again working and I can now etch your beautiful, freckled covered nose, gorgeous blue eyes, long blond hair picture into my mind.
Three years ago you turned three, mom was pregnant and we were all scared about what was going to be happening. We knew that you would be welcoming a new sister, we knew that she was going to be sick, but we could not have prepared ourselves for the ride God wrote for us.
The sites and sounds and smells and fears and pains of three years ago are still so fresh in my mind. When I look at you, sometimes it is hard for me to see who you are today, I still see you as that little girl. I cry because I feel like I missed so much with you. I really have no clue where that time went. I know that I was doing as I needed to do, you were in loving arms, and mostly I was there. But I write you this letter to let you know how much I love you and how proud I am of you.
Three years ago we had your birthday party at the toy store in town. Mom was unable to drive and I was really not suppose to be out. Your grandma's and your aunt made that day possible. There were many loving friends who came to support us as well. We didn't know when mommy would be going to the hospital so we tried to take advantage of all those moments, we tried to soak up every last snuggle we could. I am so glad we did.
You were so excited to have your very first friend birthday party. You had picked out a gorgeous princess cake with your grandma. You were so excited. And moments after your party ended you left with your grandma. Mommy needed to have her rest. My arms were so empty, I wanted to continue to celebrate with you, I wanted that moment to never end. Your pony tail bopped around in the wind as you put your foot in grandma's van. I waved goodbye and tried not to show my tears.
Six short days later, grandma brought you back to the house. You were wearing the cutest little dress. Your face was so beautiful and you had a smile that lit up the room. I remember your hug. You strong arms wrapped around mommy's neck with your little hands patty my shoulders. Mommy and daddy were leaving for the hospital. We did not know if your sister would be born that day or if mommy would have to stay in the hospital. We were nervous and scared. You were so happy to be home and playing with all of your new toys from your birthday. You waved at me, told me you loved me, and said it was all going to be all right. I remember that day as if it were yesterday.
We ended up having your sister that night. Grandma and grandpa drove you to Milwaukee late that night and you swam and feel asleep in grandpa's arms. At 9:00 that night, Lydia was born and a new chapter in our life was beginning. It was scary, but nothing broke your smile. You were always thinking about other people. You gave me strength because I missed you so much.
I remember the next day, you walked into that hospital room. You had the cutest little flowered dress on. Your aunt gave it to you because you were growing out of your clothes and mommy was so busy she did not noticed. You were so shy. You saw mommy and ran to her. We showed you your new sister and you were shy. You did not want to leave your grandma's side. Eventually you warmed up and once you did, there was no separating you from your sister.
The next five months we spent more time apart then we did together. I tried so hard to be strong, but it tore me apart to see you hurt so much, to know that you had to spend so much time apart from me. All you wanted to do was snuggle, and believe me, that is all that mommy wanted to do too! This was just the beginning, but you were so strong and brave. God gave you two of the best grandma's who took such good care of you. He gave you cousins that kept you running and playing until all hours of the night and He gave you aunts that cared for you as if you were theirs.
Coming home was amazing. You took care of your sister like a pro. You were always there to give a helping hand and comfort the saddest of souls. I know there was never much time to be with just you, it seems as though Lydia's needs were always put before yours. As a mom, it is so hard; but I did my very best. As a mom, I was stretched so thin, but God gave us an entire community that helped you understand just how much you are loved, just how important you are.
I look at you today and I am so proud of who God made you. When I think of the past three years I often think of the pain and trauma our entire family endured, but you survived. Most times we talk about Lydia and what a fighter she is. I think you one too. You were behind the scenes and you often were left to the side. You did not complain or hide. You wore your smile, you showed your tears. You were a big girl when you should have been mommy's little girl.
But you are a better person because of this experience. You understand and care far beyond your years. You notice the smallest of details and you love so deep. It is not the road I would have picked for you, but I am so glad that God is the author of your path because you are one amazing girl.
I realize that we are on a journey with your sister, that her medical needs will always be there. But some how God has really brought all of us together. He has allowed me to see you for who you are today. The pain is still there, but I am so enjoying being your mom. I wanted to let you know how special this birthday is for me. I see you in that pretty little flowery dress holding your sister for the very first time. Your eyes lit up the room and you were the proudest sister ever. Today, you are one amazing little six year old, filled with love and compassion far beyond your years. Because of what you have done for you sister, she is wearing that dress today, looking up to you, learning from you, and wanting to be just like you. What an amazing role model you are!
I love you Allison. I am so proud to be your mom. Lydia has a GREAT big sister. Thanks for being so selfless and allowing us to grow together as a family. I can't wait to see what else God has in store for you as you continue to spread your wings and soar.
Love,
Mom
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