Exhausted. I guess that does not begin to describe the journey of motherhood! Lydia has taught me a lot about being a parent through the journey we have been on. See being a parent is being present. Being a parent is being active. Being a parent is being involved. Being a parent is a verb, an action; it is not just sitting back.
With Ellen and Allison they just did and I did not have to question a lot about their developing. We took the philosophy that they would do it when they could. This is an excellent way to parent, in my opinion. We were laid back and celebrated each milestone they took. I did not realize that this would be essential for raising Lydia. It was great that God gave us this instinct.
However, I did not have to question too much. If the doctor said they needed this or that, we did it. It usually sounded reasonable to us. In daycare (I worked full time when Ellen and Allison were younger) I did not question much about what happened and what went on, what they did. I trusted pretty much everything.
Then something happened, a worker in the daycare was not treating my daughter nicely. Actually she said some very inappropriate things. When I pushed harder I was silenced. I let it be. At this point, God showed me that it would be best to be a stay at home mom. He did have to push me really hard to convince me however. After being laid off from one job, I got a new job. That job tested my faith and what I believed in. I took another job and was there for one day when I decided to be obedient to what God wanted me to do. I did not realize what He was really preparing me to do.
All of these things were really little things that were leading to something really big...Lydia. He was preparing us for a life changing event. He was preparing us to change the way we thought, acted, and He would challenge us in many ways.
I don't really remember Lydia's first surgery, I was completely out of it. But I do remember the hours upon hours that her surgeon spent in her room answering questions about her surgery. I remember questioning each nurse on how they did things. I remember asking why this test, what was this for, was that needed, why did we have to fortify her formula. The whys just kept coming. Some of it was for curiosity, some was for knowledge, and some was because I felt it was not needed.
After her first surgery we never left her side. When she died on us one day we were upset because they did not listen to us that her breathing tube was in the wrong place, despite the x-ray. See when the tube was left alone it would not allow air down, but when you pulled back on the tube a little she was just fine. It took almost losing her to understand how important a job we were given. We had to be active no matter what. After all, it is better to ask questions because we are all humans who make mistakes.
We have questioned and researched a lot of different things. We had to "fight" to get her feeding tube out. By using video, and documentation and research and talking with other professionals, we were confident in going against one specialty and agreeing with three others. It is tough, we are completely out of our element. I never spent the hours and days in medical school. But I can educate, I can be active, and I can participate in her care, in her life, in the decisions that need to be made. I am called to do that. I am accountable for her. She is on loan to me, she is God's child and He trusted me to take care of her.
It is tiring, but so rewarding. Seeing how well she has done without her feeding tube is simply amazing. We understood the risk, but we knew it was one that needed to be made. And this has begun our journey of being active parents. Asking questions, getting research, talking with others and getting involved.
I know that there are a lot of people that look at me and think oh no, not her again. Well, it does not really matter to me what they think, mostly. I have to remind myself that this is how parenting works for us. This is how God wants us to parent.
Lydia has taught me that there is a skill. I need not attack people, but just come in and ask the questions. I need to know why and what they are doing to my daughters at all times. I get involved and that way I don't miss out on anything.
We decided to put our girls in private school. I get the opportunity to go in and teach their gym class, help out with the hot lunch, get involved. I know what is happening and together, with their teachers we can effectively parent.
I am SO grateful that this journey with Lydia has allowed me to see how very important this is. It is hard and very exhausting. Today we just had an issue with some braces for her. I need more information to make sure that we are doing the right thing for her. It is hard, especially when these folks have become your friends. You don't want to offend anyone, but you need questions asked. I look into her eyes remember that moment when I was too scared to say something, and think that this is my second chance, she is worth it. Each of my daughters are worth it. Getting to know what they are doing is crucial for me.
Monday, October 7, 2013
Lessons Learned from Lydibug day 6
Sorry, this one is a bit late. We decided to go to the pumpkin farm instead of staying at home and getting things around the house. Better late than never...right?
I want thank Lydia for teaching me how to give. And I mean giving with a joyful heart (as God calls us to) and not just giving because it is the right thing to do. She has taught me that giving is so much better than receiving on a much larger scale.
Before Lydia I was a very selfish person. I was taught how to look out for myself, that is not always a bad thing. However, when I am already consumed with myself, it is not a good thing. I was a business lady and I was always looking out for me, how to make the next buck. I was completely consumed in me and this unattainable reality that was never meant to be. But I tried.
The journey of Lydia has taught me how important it is to give with a joyful heart. It has taught me how good it feels to give when someone can't pick themselves up. It has taught me that giving is more rewarding than receiving.
When we were in the hospital people gave to us a lot. We had nothing. We had drained our entire savings. From day one we decided to not let money be a factor in how long my husband was off of work. We did not want to look back and say that the Lord only gave us ten weeks with our daughter and not have any memories of that because we were trying to make a buck. I will never regret that.
The Ronald McDonald house is a wonderful place. But without people who give, it would be nothing. The gifts, the meals, the opportunities for the other girls. A place to call home when you have nothing, when your entire world is shattered. It is an amazing place. There are countless things that the house did for us that I will always remember. I will always remember those who gave.
There were strangers that heard about our story that wrote us letters to encourage us. Those are stories that touched my heart. They gave us a little piece of themselves. There were classes and classes of people who wrote letters to our families, who gave us Bible verses and encouragement, who prayed for us. I will be touched by those letters forever. They gave us exactly what we needed.
There were family members and friends who gave us gift cards and helped us however they could. Meals and watching our kids. There were friends and strangers who finished our house while it was under construction (a major project that we had started right before Lydia was born that we would finish before she was born). There were countless people who cleaned and got our home ready to bring our new child home.
I have all of these stories that have touched me and changed me. I have a journey that I have been placed on that has completely shown me new way of living, a new me! I am so blessed. And it would be a complete travesty if I experienced all of this and I was not changed. However, praise God that I live a new life.
I am not perfect, nor will I ever be. But I give with a joyful heart. When we give to church or a missionary, or another cause, I always praise God that I am able to do this. I thank Him for blessing me enough that I can give. I thank Him for teaching the joy of giving. I will never be a millionaire, nor do I even want that. I want to give of myself to help others in need. I want to be able to make an impact to others just as they have done for me.
And as Lydia has taught me, it is not just money. The countless letters and prayers that people offered were often times much more important than the gift cards. The fact that people took time out of their lives to think about us meant so much.
Lydia gives to everyone. I look at her share with her sisters. I look at her giving hugs freely to strangers. It brings a tear to my eye to know that I once was so selfish I could not see this great gift. I praise God that I am changed, that I have learned the joy of giving.
I want thank Lydia for teaching me how to give. And I mean giving with a joyful heart (as God calls us to) and not just giving because it is the right thing to do. She has taught me that giving is so much better than receiving on a much larger scale.
Before Lydia I was a very selfish person. I was taught how to look out for myself, that is not always a bad thing. However, when I am already consumed with myself, it is not a good thing. I was a business lady and I was always looking out for me, how to make the next buck. I was completely consumed in me and this unattainable reality that was never meant to be. But I tried.
The journey of Lydia has taught me how important it is to give with a joyful heart. It has taught me how good it feels to give when someone can't pick themselves up. It has taught me that giving is more rewarding than receiving.
When we were in the hospital people gave to us a lot. We had nothing. We had drained our entire savings. From day one we decided to not let money be a factor in how long my husband was off of work. We did not want to look back and say that the Lord only gave us ten weeks with our daughter and not have any memories of that because we were trying to make a buck. I will never regret that.
The Ronald McDonald house is a wonderful place. But without people who give, it would be nothing. The gifts, the meals, the opportunities for the other girls. A place to call home when you have nothing, when your entire world is shattered. It is an amazing place. There are countless things that the house did for us that I will always remember. I will always remember those who gave.
There were strangers that heard about our story that wrote us letters to encourage us. Those are stories that touched my heart. They gave us a little piece of themselves. There were classes and classes of people who wrote letters to our families, who gave us Bible verses and encouragement, who prayed for us. I will be touched by those letters forever. They gave us exactly what we needed.
There were family members and friends who gave us gift cards and helped us however they could. Meals and watching our kids. There were friends and strangers who finished our house while it was under construction (a major project that we had started right before Lydia was born that we would finish before she was born). There were countless people who cleaned and got our home ready to bring our new child home.
I have all of these stories that have touched me and changed me. I have a journey that I have been placed on that has completely shown me new way of living, a new me! I am so blessed. And it would be a complete travesty if I experienced all of this and I was not changed. However, praise God that I live a new life.
I am not perfect, nor will I ever be. But I give with a joyful heart. When we give to church or a missionary, or another cause, I always praise God that I am able to do this. I thank Him for blessing me enough that I can give. I thank Him for teaching the joy of giving. I will never be a millionaire, nor do I even want that. I want to give of myself to help others in need. I want to be able to make an impact to others just as they have done for me.
And as Lydia has taught me, it is not just money. The countless letters and prayers that people offered were often times much more important than the gift cards. The fact that people took time out of their lives to think about us meant so much.
Lydia gives to everyone. I look at her share with her sisters. I look at her giving hugs freely to strangers. It brings a tear to my eye to know that I once was so selfish I could not see this great gift. I praise God that I am changed, that I have learned the joy of giving.
Saturday, October 5, 2013
Lessons Learned from Lydibug Day 5
Today we are walking to create awareness for Down syndrome. Today we will gather with friends and family and celebrate all of the many people who carry an extra 21st Chromosome. Today we will educate one another and have fun. We will see people with all different abilities, physical differences, cognitive abilities and we will embrace every single person and celebrate one another. It is a time to gather resources and make new friends; to network and share our story. It is an event in our house; almost like another holiday!
This is our second year doing the walk. I can't begin to describe to you how much the support means to me and our family. To know that we are surrounded by this much love and acceptance is simply amazing. People we hardly know coming to the walk to support us. People who we don't even know supporting Team Lydibug. People encouraging us and helping us raise awareness. I am so humbled by all of the support.
Pre-Lydia I was not involved in a "cause." I thought it was like the new trend and I steered clear of them. Maybe it did not affect me enough. It was not like I did not care, I just thought that I was fine in my corner of the world going to church, raising my kids, and growing in my marriage. I supported things bigger than me, other than our church, but often times I just gave money or just put in the minimal time required. I was involved in things, I volunteered, but there was no passion behind it.
I know it is easier to be involved in things, to be passionate about things when it affects your life. I regret that I had to wait until it did affect my life. Down syndrome affected my life way before Lydia and I just put blinders on. My husband's friend growing up had Down syndrome; he even stood up in our wedding. My cousin had a son with Down syndrome several years ahead of Lydia. One of my friends had a son with Down syndrome just a couple of years before Lydia. I did not "get it." I was unaffected because I did not have much compassion for others than myself, if I am being brutally honest. THANK YOU LYDIA FOR COMING ALONG AND SHOWING ME WHAT I WAS MISSING!
Yes, Down syndrome is in our life, it is just who we are. And unlike so many causes that get the spotlight all of the time, there is no cure that we are in search of, there is no miracle drug we are looking for, there is no switch that we are looking to turn off. The goal, at least my goal, I want acceptance for my daughter. I want others to understand that my daughter, even with an extra 21st Chromosome is no different. I want the same education and experience for her as my other daughters. I want her to be accepted in society. I want others to look at her for what she can do and not what she can't.
Lydia has unleashed a passion in me. It is a passion, a compassion for the value of human life. While it has always been important to me, I understand it so much more now because of her. I see how it can be a cruel world and I see how it can be a loving world. I can see how God's plan is directly laid out. We are to love our neighbors. That's it. The world often times is very unloving to people who the world deems as not worthy. That is sad. She has shown me how important every single human life is, no matter what.
I wish that I would have learned this passion much sooner. However, I am committed to raising awareness, helping others as much as I can. And it is not for selfish reasons either. It is to truly help others. Lydia showed me the value of her life when the world said there was no value. The walk is one small way to raise awareness. I have also opened our lives up to share our story to help others. I help lead a support group in our town to help other families who have children with any disability.
And I am so excited to see what other ways God will lead me to so I can help others, so I can create awareness and share this passion. I thank God for allowing Lydia to come into my life to learn so many great lessons. Thanks God for showing me, for guiding me, and for putting so many amazing people in our lives to support us!
This is our second year doing the walk. I can't begin to describe to you how much the support means to me and our family. To know that we are surrounded by this much love and acceptance is simply amazing. People we hardly know coming to the walk to support us. People who we don't even know supporting Team Lydibug. People encouraging us and helping us raise awareness. I am so humbled by all of the support.
Pre-Lydia I was not involved in a "cause." I thought it was like the new trend and I steered clear of them. Maybe it did not affect me enough. It was not like I did not care, I just thought that I was fine in my corner of the world going to church, raising my kids, and growing in my marriage. I supported things bigger than me, other than our church, but often times I just gave money or just put in the minimal time required. I was involved in things, I volunteered, but there was no passion behind it.
I know it is easier to be involved in things, to be passionate about things when it affects your life. I regret that I had to wait until it did affect my life. Down syndrome affected my life way before Lydia and I just put blinders on. My husband's friend growing up had Down syndrome; he even stood up in our wedding. My cousin had a son with Down syndrome several years ahead of Lydia. One of my friends had a son with Down syndrome just a couple of years before Lydia. I did not "get it." I was unaffected because I did not have much compassion for others than myself, if I am being brutally honest. THANK YOU LYDIA FOR COMING ALONG AND SHOWING ME WHAT I WAS MISSING!
Yes, Down syndrome is in our life, it is just who we are. And unlike so many causes that get the spotlight all of the time, there is no cure that we are in search of, there is no miracle drug we are looking for, there is no switch that we are looking to turn off. The goal, at least my goal, I want acceptance for my daughter. I want others to understand that my daughter, even with an extra 21st Chromosome is no different. I want the same education and experience for her as my other daughters. I want her to be accepted in society. I want others to look at her for what she can do and not what she can't.
Lydia has unleashed a passion in me. It is a passion, a compassion for the value of human life. While it has always been important to me, I understand it so much more now because of her. I see how it can be a cruel world and I see how it can be a loving world. I can see how God's plan is directly laid out. We are to love our neighbors. That's it. The world often times is very unloving to people who the world deems as not worthy. That is sad. She has shown me how important every single human life is, no matter what.
I wish that I would have learned this passion much sooner. However, I am committed to raising awareness, helping others as much as I can. And it is not for selfish reasons either. It is to truly help others. Lydia showed me the value of her life when the world said there was no value. The walk is one small way to raise awareness. I have also opened our lives up to share our story to help others. I help lead a support group in our town to help other families who have children with any disability.
And I am so excited to see what other ways God will lead me to so I can help others, so I can create awareness and share this passion. I thank God for allowing Lydia to come into my life to learn so many great lessons. Thanks God for showing me, for guiding me, and for putting so many amazing people in our lives to support us!
Friday, October 4, 2013
Lessons Learned from Lydibug Day 4
Today I want to talk about love. Lydia has shown me what love is in such a different way. It has affected me so much that this blog was started. Love is so much more than that feeling that we get. Love is so much more than ourselves. Love is a choice. Love is something that we chose all of the time. Love is not a feeling.
When I married my husband, I did not have a clue what love was. I loved for a feeling, I loved because it made me feel good. I loved because he did things for me all of the time. I loved because he made me feel special. All fine reasons for love, until the weather of life starts to rumble. What happens when you encounter your first large trial of life? Will your feeling of love withstand it, or will it crumble?
My husband and I have had many trials that this life has thrown at us. I am blessed to say that early on God showed us how we needed to build our marriage, our home, our foundation. Without that, we would not have been able to withstand a lot of life's trials and tribulations. Love is so much more than a feeling. When my husband was not treating me well, I had to chose to love him, and it was not easy. Just like when I was not nice to him, I am so glad that he chose to love me anyways.
When Lydia came along love was easy, it was my child. However, love made me chose some hard things. It is not easy to put your child through major operations. But in love, we had to. It is not easy to chose between your children, but in love we knew we were doing the very best thing for our family.
And because of these trials, I do believe that my children have been taught some very valuable lessons. They understand that love is tough, that it is a choice. If you were ever near the Ronald McDonald house on a weekend when our children went with one of their grandma's you would understand just how tough it was. The crying from mom and the yelling from the children. That desperation that we just wanted to be with one another. While we all understood what the best choice was, it was hard. I tear up just thinking about the pain and loneliness that we went through. It was a far cry from the feeling of love that I had when each of them were first placed in my arms, when I had the first date with my husband. But as the storms of life were crashing, I better understood love.
There are days when my children drive me nuts, when they push my buttons too far, but I am still called to love them. There are days when the medical issues with Lydia seem too hard to endure, but I am still called to love her. There are days when my husband drives me nuts but I am still called to love him. And I am sure there are days when my entire family is just about fed up with my stuff too; but they still choose to love me.
Lydia also showed me what unconditional love is. It is not saying I will love you if you are perfect, but saying I will love all of your imperfections because that is what makes you, you! It is about having my love all of the time and not just for a moment or when you do this or you dress like this. Love is all of the time. Just as the Father sent His only Son to die for me and you, for our sins. While we were still sinners, Jesus died for us. Unconditional love.
And Lydia gives the best unconditional love to not only her family, but complete strangers. She demonstrates love all of the time. Love without bounds. Love without strings attached. Pure and simple love.
I am so thankful for this lesson. I am a better person because not only through Lydia, but our journey with the medical issues, I understand love so much better. It has made my marriage so much better, my parenting skills more effective, my compassion for others greater, my disposition on life better. I am so blessed that she is mine. I am blessed each day at the lessons she constantly shows me. Praise God!
When I married my husband, I did not have a clue what love was. I loved for a feeling, I loved because it made me feel good. I loved because he did things for me all of the time. I loved because he made me feel special. All fine reasons for love, until the weather of life starts to rumble. What happens when you encounter your first large trial of life? Will your feeling of love withstand it, or will it crumble?
My husband and I have had many trials that this life has thrown at us. I am blessed to say that early on God showed us how we needed to build our marriage, our home, our foundation. Without that, we would not have been able to withstand a lot of life's trials and tribulations. Love is so much more than a feeling. When my husband was not treating me well, I had to chose to love him, and it was not easy. Just like when I was not nice to him, I am so glad that he chose to love me anyways.
When Lydia came along love was easy, it was my child. However, love made me chose some hard things. It is not easy to put your child through major operations. But in love, we had to. It is not easy to chose between your children, but in love we knew we were doing the very best thing for our family.
And because of these trials, I do believe that my children have been taught some very valuable lessons. They understand that love is tough, that it is a choice. If you were ever near the Ronald McDonald house on a weekend when our children went with one of their grandma's you would understand just how tough it was. The crying from mom and the yelling from the children. That desperation that we just wanted to be with one another. While we all understood what the best choice was, it was hard. I tear up just thinking about the pain and loneliness that we went through. It was a far cry from the feeling of love that I had when each of them were first placed in my arms, when I had the first date with my husband. But as the storms of life were crashing, I better understood love.
There are days when my children drive me nuts, when they push my buttons too far, but I am still called to love them. There are days when the medical issues with Lydia seem too hard to endure, but I am still called to love her. There are days when my husband drives me nuts but I am still called to love him. And I am sure there are days when my entire family is just about fed up with my stuff too; but they still choose to love me.
Lydia also showed me what unconditional love is. It is not saying I will love you if you are perfect, but saying I will love all of your imperfections because that is what makes you, you! It is about having my love all of the time and not just for a moment or when you do this or you dress like this. Love is all of the time. Just as the Father sent His only Son to die for me and you, for our sins. While we were still sinners, Jesus died for us. Unconditional love.
And Lydia gives the best unconditional love to not only her family, but complete strangers. She demonstrates love all of the time. Love without bounds. Love without strings attached. Pure and simple love.
I am so thankful for this lesson. I am a better person because not only through Lydia, but our journey with the medical issues, I understand love so much better. It has made my marriage so much better, my parenting skills more effective, my compassion for others greater, my disposition on life better. I am so blessed that she is mine. I am blessed each day at the lessons she constantly shows me. Praise God!
Thursday, October 3, 2013
Lessons Learned From Lydibug Day 3
Today we celebrate a two year anniversary for Lydia. Two years ago Lydia went in for her Gastric Transposition surgery. Two years ago her anatomy would change forever. Two years ago I could not even picture a day like today! So it only seemed fitting that I write about the gift of faith that Lydia has given to me! I have to say that I was not preparing to write this one so early as this has affected everything. But as I was updating her caring bridge today, it was made clear that today is the day!
The dictionaries definition of faith is as follows:
Noun: 1. Complete trust or confidence in something. This restores one faith's in politicians.
Synonyms: trust, believe, confidence, conviction
2. Strong belief in God or in the doctrines of other religion based on a spiritual apprehension rather than proof.
Complete trust or confidence in something. What does it mean to have COMPLETE trust or confidence in something. I remember handing off Lydia to the surgeon. I trusted him, I understood that he would take as good care of her as he could, I understood the surgery and the risks and complications. However, I know that I could not have complete confidence in him and the surgery; after all he is only human and we all make mistakes.
When the situation was so large that I was unsure of what else I could do, I had to have complete faith in God. Faith that He would do as He says in the Bible that He will do. I had to have faith that it would work out exactly as God had designed it to, not the way that I wanted it to! Faith, much larger than me and much harder to completely believe than I thought it would be! Faith that was larger than our circumstance. Faith that did not change.
Believing that God is who He says He is and believing in the Bible, regardless of how far from society it is, is faith. Believing the entire Bible without adding in what I think should be in there. Having faith in the Bible for exactly what it says, the way it says! It is a hard thing to completely believe without seeing. It is hard to not add in our own thoughts to make it fit our lifestyle better. Faith that God is there even though we cannot see Him or touch Him.
Lydia had complete faith and trust in her mom and dad. She trusted us. We were given several proofs that she did. The way her heart rate came down when we entered the unit, the way she turned to the sound of our voice. She probably was just like any other baby in that respect. She trusted us completely. She had faith that we would make the very best decisions for her.
Faith that can move mountains is what she gave me. Faith that can remove stereotypes. Faith that can see only love. Faith that can take you out of the deepest darkest pit and give you a peace that can only come from above. Faith that is unshakable. This is Lydia's gift to me.
I would realize, two years ago, what that faith really meant. As we stood there praying and pleading with God to spare Lydia's life. We thought we were ready but when the moment was there, we were not. But we had faith knowing that God would work it out for His glory. Faith that God knows what is best. Faith that we did our research and disagreeing with the doctors was really in Lydia's best interest. Faith to walk on the water, holding the Father's hand and not to get distracted. Faith is what she gave us.
Faith has transformed my life is so many ways. I am so so very thankful of the faith she has given me. I am so so thankful for this journey and the lessons I have been taught. Most of all, I am thankful that God loved me enough to put me here. God loved me enough to teach me all about faith through Lydia!
The dictionaries definition of faith is as follows:
Noun: 1. Complete trust or confidence in something. This restores one faith's in politicians.
Synonyms: trust, believe, confidence, conviction
2. Strong belief in God or in the doctrines of other religion based on a spiritual apprehension rather than proof.
Complete trust or confidence in something. What does it mean to have COMPLETE trust or confidence in something. I remember handing off Lydia to the surgeon. I trusted him, I understood that he would take as good care of her as he could, I understood the surgery and the risks and complications. However, I know that I could not have complete confidence in him and the surgery; after all he is only human and we all make mistakes.
When the situation was so large that I was unsure of what else I could do, I had to have complete faith in God. Faith that He would do as He says in the Bible that He will do. I had to have faith that it would work out exactly as God had designed it to, not the way that I wanted it to! Faith, much larger than me and much harder to completely believe than I thought it would be! Faith that was larger than our circumstance. Faith that did not change.
Believing that God is who He says He is and believing in the Bible, regardless of how far from society it is, is faith. Believing the entire Bible without adding in what I think should be in there. Having faith in the Bible for exactly what it says, the way it says! It is a hard thing to completely believe without seeing. It is hard to not add in our own thoughts to make it fit our lifestyle better. Faith that God is there even though we cannot see Him or touch Him.
Lydia had complete faith and trust in her mom and dad. She trusted us. We were given several proofs that she did. The way her heart rate came down when we entered the unit, the way she turned to the sound of our voice. She probably was just like any other baby in that respect. She trusted us completely. She had faith that we would make the very best decisions for her.
Faith that can move mountains is what she gave me. Faith that can remove stereotypes. Faith that can see only love. Faith that can take you out of the deepest darkest pit and give you a peace that can only come from above. Faith that is unshakable. This is Lydia's gift to me.
I would realize, two years ago, what that faith really meant. As we stood there praying and pleading with God to spare Lydia's life. We thought we were ready but when the moment was there, we were not. But we had faith knowing that God would work it out for His glory. Faith that God knows what is best. Faith that we did our research and disagreeing with the doctors was really in Lydia's best interest. Faith to walk on the water, holding the Father's hand and not to get distracted. Faith is what she gave us.
Faith has transformed my life is so many ways. I am so so very thankful of the faith she has given me. I am so so thankful for this journey and the lessons I have been taught. Most of all, I am thankful that God loved me enough to put me here. God loved me enough to teach me all about faith through Lydia!
Wednesday, October 2, 2013
Lessons Learned from Lydibug Day 2
One thing that is hard about writing for 31 days is that some days you just don't have it in you! I like to write when I want to. However, it is very important for me to write and share the lessons that Lydia has taught me. I love to focus on who she is and how she makes me who I am today. I think that every fiber of who I am has been changed for the better because of her.
Originally I was going to go in some kind of order. I didn't figure out that order. Now I can't stop thinking of lessons that she has taught me. I am having a hard time trying to narrow it down to just 31 lessons that she has taught me. There are so many things that she does just because she is Lydia and they have taught me so much!
We drive a lot. We have lots of appointments in Milwaukee. I have to take the girls into town every day for school and pick them up! Both of the grandparents live about two hours away. My husband works one hour away from our house. So, we drive a lot. And we listen to a lot of music. And we talk a lot in the car. It is a good bonding time.
Sometimes, after a rough morning of getting all of the kids ready and out the door on time, I am exhausted. I am frustrated. I am angry. Mornings are a really rough time. Recently we have been getting in the car and just praying. Praying for our day, asking for forgiveness from the morning. All of the girls participate in the prayer; even Lydia.
However, after the prayer we turn up the CD and just dance. There is nothing like watching your two year old get everyone in the car just bopping their heads, shaking their butts in the seat, throwing their arms up in the air, and just letting lose. The smiles and the giggles are priceless.
Lydia has taught me how to release everything through dancing. I know sounds silly, but what a great thing. And to see her dancing and smiling and having fun is so rewarding. To watch her interact with her sisters and dance with them is amazing. It melts my heart.
I feel in many ways it is like Lydia understands the stressfulness of the morning and knows that I need help just releasing it. After we pray we are to release that to God and allow Him to take care of that. I am not good at it. So this is Lydia's way to help mommy just remember that we are to have joy that comes from the Lord.
Most mornings we pull into school with the music blaring and we are dancing to "Every Move I Make." We probably look so silly and people are probably watching me drive thinking man that is one mom who has completely lost her mind. And for moments I have, I have released everything with my kids and just allow pure joy to take over. It is the best. These are the moments I live for.
Thank you Lydia for allowing your joy to spill over to the rest of the family. Thank you for reminding me that I need to release those worries and cares to God, He will take care of them for me. Thank you for showing me the joy through music and dance. Thank you for putting a smile on my face and allowing me to forget about why I was mad. You are my dose of sunshine every day!
Originally I was going to go in some kind of order. I didn't figure out that order. Now I can't stop thinking of lessons that she has taught me. I am having a hard time trying to narrow it down to just 31 lessons that she has taught me. There are so many things that she does just because she is Lydia and they have taught me so much!
We drive a lot. We have lots of appointments in Milwaukee. I have to take the girls into town every day for school and pick them up! Both of the grandparents live about two hours away. My husband works one hour away from our house. So, we drive a lot. And we listen to a lot of music. And we talk a lot in the car. It is a good bonding time.
Sometimes, after a rough morning of getting all of the kids ready and out the door on time, I am exhausted. I am frustrated. I am angry. Mornings are a really rough time. Recently we have been getting in the car and just praying. Praying for our day, asking for forgiveness from the morning. All of the girls participate in the prayer; even Lydia.
However, after the prayer we turn up the CD and just dance. There is nothing like watching your two year old get everyone in the car just bopping their heads, shaking their butts in the seat, throwing their arms up in the air, and just letting lose. The smiles and the giggles are priceless.
Lydia has taught me how to release everything through dancing. I know sounds silly, but what a great thing. And to see her dancing and smiling and having fun is so rewarding. To watch her interact with her sisters and dance with them is amazing. It melts my heart.
I feel in many ways it is like Lydia understands the stressfulness of the morning and knows that I need help just releasing it. After we pray we are to release that to God and allow Him to take care of that. I am not good at it. So this is Lydia's way to help mommy just remember that we are to have joy that comes from the Lord.
Most mornings we pull into school with the music blaring and we are dancing to "Every Move I Make." We probably look so silly and people are probably watching me drive thinking man that is one mom who has completely lost her mind. And for moments I have, I have released everything with my kids and just allow pure joy to take over. It is the best. These are the moments I live for.
Thank you Lydia for allowing your joy to spill over to the rest of the family. Thank you for reminding me that I need to release those worries and cares to God, He will take care of them for me. Thank you for showing me the joy through music and dance. Thank you for putting a smile on my face and allowing me to forget about why I was mad. You are my dose of sunshine every day!
Tuesday, October 1, 2013
Lessons Learned from Lydibug
Today starts Down Syndrome Awareness month. As part of my dedication to raise awareness about Lydia and others like her, I thought I would share lessons that she has taught me. I don't want to focus on anything other than who she is. I want to push aside all of the stereotypes and negative things and just focus on the pureness of who she is. She is much more than her diagnosis, she is much more than 47 chromosomes, she is much more than any physical defect or cognitive delay could describe. She is a human being, a beating heart, a caring mind, a real hug, a true friend, a loving daughter, a crazy little sister, joy wrapped in a smile that will light a room.
The first lesson that she has taught me is the power of prayer. While I have believed in Jesus and I have gone through many of the emotions and rituals, she has truly taught me what it is like to pray. She has taught me that prayer is a powerful thing in more than one way. It is the connection with my Father, and it is a lifeline that is essential to my life. Prayer gives hopes and takes away worries.
When we found out at 20 weeks that there may be a diagnosis of Down syndrome, it was not a huge deal. While yes, there were tears, we were ready, we were excited. We were worried about her health, but I don't think it ever really sank in. After this finding, the prayer bike was made famous! I had been biking every day and that is when I prayed. However, the prayers got longer and longer and the bike seemed as though it was only about 5 minutes rather than 30 minutes.
It was in these quiet moments that I had time with God to just pour my heart out. I remember praying "God just let our baby be healthy, but ultimately it is Your Will." I remember feeling such a peace about our new journey that we may or may not be taking. They were quiet moments that were preparing my heart, teaching me how important this lifeline would be for me.
Then, at 33 weeks when we found out some of the medical complications, when they had to do the amniocenteses and there were risks that I would deliver early; this is where prayer was my everything. When the situation is so large and you are unsure of how to make your next move, when you don't even know what the next step may be, prayer is there. miracles happen when you are faithfully down on your knees.
We saw miracle after miracle happen. While our prayers were not usually answered the way that we had wanted them to be answered, they were answered in much powerful ways. See when you pray, you open your heart and pour out everything to God. He knows best for your life. He will direct your steps, keep you from stumbling. Prayer will calm you knowing you are in relation with your Heavenly Father.
Prayer is a powerful thing. On days of surgeries, we knew we were covered in prayer from miles and miles around. Those prayers were wrapped around us and felt. Those prayers held us in some of the deepest darkest moments we had ever experienced. However, those prayers offered hope and healing, no matter the situation.
So today I thank Lydia for teaching me the power of prayer in my life. This is a lesson that was hard to learn but has been a complete reward for me. I am so blessed and honored that I know this and can continue to learn about prayer and the impact on my life. Thank you sweet little daughter for giving me much more than I will ever be able to give you. You have impacted my life in a profound way and I am so grateful for you!
The first lesson that she has taught me is the power of prayer. While I have believed in Jesus and I have gone through many of the emotions and rituals, she has truly taught me what it is like to pray. She has taught me that prayer is a powerful thing in more than one way. It is the connection with my Father, and it is a lifeline that is essential to my life. Prayer gives hopes and takes away worries.
When we found out at 20 weeks that there may be a diagnosis of Down syndrome, it was not a huge deal. While yes, there were tears, we were ready, we were excited. We were worried about her health, but I don't think it ever really sank in. After this finding, the prayer bike was made famous! I had been biking every day and that is when I prayed. However, the prayers got longer and longer and the bike seemed as though it was only about 5 minutes rather than 30 minutes.
It was in these quiet moments that I had time with God to just pour my heart out. I remember praying "God just let our baby be healthy, but ultimately it is Your Will." I remember feeling such a peace about our new journey that we may or may not be taking. They were quiet moments that were preparing my heart, teaching me how important this lifeline would be for me.
Then, at 33 weeks when we found out some of the medical complications, when they had to do the amniocenteses and there were risks that I would deliver early; this is where prayer was my everything. When the situation is so large and you are unsure of how to make your next move, when you don't even know what the next step may be, prayer is there. miracles happen when you are faithfully down on your knees.
We saw miracle after miracle happen. While our prayers were not usually answered the way that we had wanted them to be answered, they were answered in much powerful ways. See when you pray, you open your heart and pour out everything to God. He knows best for your life. He will direct your steps, keep you from stumbling. Prayer will calm you knowing you are in relation with your Heavenly Father.
Prayer is a powerful thing. On days of surgeries, we knew we were covered in prayer from miles and miles around. Those prayers were wrapped around us and felt. Those prayers held us in some of the deepest darkest moments we had ever experienced. However, those prayers offered hope and healing, no matter the situation.
So today I thank Lydia for teaching me the power of prayer in my life. This is a lesson that was hard to learn but has been a complete reward for me. I am so blessed and honored that I know this and can continue to learn about prayer and the impact on my life. Thank you sweet little daughter for giving me much more than I will ever be able to give you. You have impacted my life in a profound way and I am so grateful for you!
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