I wanted to expand on something from my last post a little more. The opportunity that we give to our children. Parents of children who have special needs often times find them in a place fighting for the same things "normal" children are given. This makes me so sad. My day, most often, is spent on the phone or filling out some kind of paper work to ensure that my daughter has the same opportunity as everyone else in this house. It makes me sad, especially when I hear that we are an equal opportunity country. We have a long road to travel to get to the same playing ground for everyone.
Lydia will be a test subject in our school district (if we should stay). They do not have early childhood education. So, even at age two, it has been a battle to make sure things will properly be in place or at least people thinking about her transition into the school district when the time has come. I have not had to do that with any of my other children. See, the classrooms are set up for what they deem as "normal" and if you differ from that, there is a struggle. Good or bad, it really does not matter, there should not be one. She should be welcomed with open arms, just as everyone else is. She should be given the same opportunity as Ellen and Allison are. But it is my job to make sure that happens.
I will fight (I use this world loosely...meaning I will make sure) that all my children get every opportunity in life. And I think that parents of special need children are looked at differently because there is not the same opportunity. See, I don't want that label put on my child. She can do whatever God intends her to do. NO ONE can predetermine that. If we label her, most likely, she will only rise to that label. However, if we give her every opportunity, she will most likely rise way above that. Ellen and Allison never had a label put on them. I can ensure if you, if they did, they would only be at that level also. As a society we are doing a HUGE dis-service to these children and to ourselves. You see, we too miss out on the blessing of what every child has to bring to the table. They can teach us things too if we only open our minds.
I get a bit frustrated and annoyed by this. I don't understand why we always have to focus on their inabilities. I have to say our therapy team has taught me a lot about that. She can't do this, OK, she does this really well. So we work on what she can do well and the other things follow. Lydia then is not frustrated because she cannot do the things we are telling her to do. She is only going to do the things she knows to do, the things she wants to do (she is very determined and stubborn and she knows what she wants to do!). Who am I to come in and tell her to do something different? I never told Ellen and Allison what to do, they just learned in on their own. Eventually it came.
Sorry, I was getting a little off topic, but it really bothers me. I do think that from every failure we have, there is an opportunity. I have used this as a lesson several times with Ellen and Allison. I do be believe they are better because of it. They ask why I am on the phone so much, why there is so much paperwork, why this and why that. I am open with them and I talk to them about it.
I have overheard Ellen talking to her peers about Lydia when they ask questions. She talks and communicates better than most adults. You see, Lydia is not different to her, it is just how she was created. Ellen sees no difference in that. She is able to talk to them about how she helps her sister out and how many lessons her sister has taught her. She has told her peers that Lydia is no different than her, she just learns at a different pace.
When Lydia gained weight yesterday, Ellen simply said, I had a part in that. Yes, yes, she did. She helps feed Lydia and she is involved in pretty much every aspect of her life. I think it is wonderful to involve the kids and really make them understand.
I can do that with my parenting to the other girls also. I fail so many times. We talk about it and we pray about it. We talk about the sins mommy needs to work on and the sins the girls need to work on. We pray together and we read the Bible. We hold one another accountable for our actions. We speak the truth in love. Lydia has helped our family to do this by being who she is, by opening our eyes to a world that we were blind to.
We are not perfect people, never will be. But you see the beauty is that from every failure there is an opportunity. From every situation of hurt and grief, heartache and sorrow we have a choice to let it weigh us down or be an opportunity for us. It is up to us.
Many people said that Lydia is a failure, was a mistake. I say you are wrong, but there is an opportunity in her. I would have to say that she has definitely lived up to that. She has impacted lives, she has changed me, she has made her sisters better people, she has brought joy to other people's lives. She is an inspiration. She is just the opportunity that our family needed.
I have to say that this post went a lot different in my head, but hopefully you get my point. Even from our messed up society there is a huge opportunity, a huge learning curve. I am blessed to be part of that. Hopefully along the way Lydia and our family can make an impact somewhere. We can teach others some of the lessons we have learned. We can teach others about their opportunities from failures (and on a side note, never once did I think Lydia was a mistake, but I know that others in society think that). If we are not learning we are not growing and we are not improving ourselves. We are but clay in the Potter's Hand, learning to be shaped and molded according to His plan.
Wednesday, May 15, 2013
Saturday, May 11, 2013
A Legacy
When I set out on the road to motherhood, I am not sure what I expected. I wanted a child, my husband and I both. We shared in many of the ideas of how to raise a child. We were excited. But I don't think that it was until Lydia came along that I really discovered what my motherhood experience really meant to me.
With Ellen much of my focus was trying to survive. She was the first, everything was perfect. She was involved in a lot, she was sheltered and she pretty much got everything I thought was right for her. I was in love, I was full of bliss. However, I was without direction. I was longing for her to have lots of friends, to have the perfect toys, the most of everything that did not matter.
Allison came along 19 short months later. Life was challenging. On maternity leave I knew I wanted to stay at home with her. I just knew that my children longed to have me in their lives all of the time and they deserved it. During my maternity leave God heard my cry and I was laid off from my job. I did start part-time at our church almost immediately. But I felt like this was good. We still had enough money to give them all of the necessities and I was mostly focused on them. I felt like I had a little more direction. We discussed faith but I was still focusing on things of this world to make us happy.
We tried for a while to have Lydia. We were just about ready to accept that God had made our family perfect at four when the test (our last one and I said I was buying no more) was positive. We were so happy. At 20 weeks there was a possibility our child would have Down syndrome. This was really "new" to our vocabulary. While we knew people who had children with Down syndrome, and friends who also carried an extra 21st Chromosome, it was new to us. It challenged me to really soul search of what it meant to be a mom and to love beyond myself. After a day or so of living with that possibility we were again elated with this new possibility.
I remember praying on my "prayer bike" (a term my ladies Bible study friends gave to me because I prated out loud while I biked), Lord please let Your Will be done. If this baby has Down syndrome, give me the strength and the wisdom. I also prayed for a healthy baby. My love for our Lord grew each passing day while I awaited this special gift to be born. My faith strengthened and I did not even realize what was happening. God was preparing me.
Again, at 34 weeks another new reality set in. Not only would we be having a child who would carry a little something extra, but there were several complications. I found out that there was a heart defect with our sweet Lydia and other complications that would go undiagnosed until she was born. Now I really had to do some soul searching and figure out how I was going to love this child. No amount of money or stuff could change this situation. However, faith could; however, God is the ultimate healer and He could give me rest when no one else could.
At that point, 34 weeks pregnant I knew that the journey I was now on was going to change me forever, it was going to change me as a mom. The stuff became less important and reading books to the girls and watching them play and interact became super important. Working and making a buck was something of a distant memory. Keeping myself healthy to give Lydia everything she could have was the most important thing possible.
At that moment the legacy that I leave behind (my children) was the most important thing in the world. If we had to live in our car, if we had everything stripped of us; it made no difference. As long as I was with my children, as long as we had our faith, as long as we placed our lives at Jesus' feet, everything would be OK. I am not sure how, but it would be OK.
The next moments, seconds, minutes, hours, days, weeks, months I would rely fully on God to get me through. He would show me the way and give me the strength to get through some of the hardest days of my life. He would show me why it is important to be a mom and what the meaning of life is. The stuff became trivial as time with my children, my husband, my family became the most important thing to me. Making sure that my children had a deep love for the Lord. Making sure that my children were obedient and had manners. Making sure my children understood what respect was and most of all making sure my children saw an example of love, self-less serving love. The kind where you put others before yourself no matter what.
I give thanks to God for giving me Lydia. She saved me. She showed me the importance of being a mom. She taught me one of life's best gift...family. She taught me love and sacrifice. She taught me the value of just being yourself and fighting with everything you have inside of yourself. She taught me why I am a mom and how important that legacy is to leave behind.
You see, just by being her, she will have taught her entire family (and those around her) how to love with your whole heart, how to see things black and white, how to be so determined you prove all of the people wrong, how to break through stereo types, how to break down barriers, how to forgive, how to find joy in everything, and how to cease EVERY moment and make it the most special thing. And she does not have to do anything other than being herself.
I am blessed that I had an amazing mom who gave me this same legacy. She gave me foundational cornerstones that I was able to build my life by. She gave me unconditional love, support, forgiveness. Things were not perfect, but she understood what it was to be a mom and why God had called her to be a mom. She gave her all to her children. I am so proud to be called her daughter and I love her so much. I am not very good at saying that, but I believe that she is one of the most incredible moms. She continues to show that every single day. She, without question, left everything at home to come stay with us at the Ronald McDonald's House to, in essence, raise my other children. She did it with grace and beauty. Thank you mom.
I have also had the privilege to see my sisters raise beautiful families. I long to be closer to them, but often times I am better at shutting people out than letting them in. They parent with such a gentle, caring, giving heart. I am so proud of them and proud to be an auntie of two beautiful nieces and three handsome nephews. I am blessed to be walking in this journey of motherhood with them. I am honored to learn from some great moms. Thank you for being a wonderful influence on me.
As we celebrate Mother's Day this year, I realize how many wonderful mother's God has placed in my life that I may learn from. That I may continue to reach towards that goal of leaving a lasting legacy.
The other day someone told me that I was so special because God chose me to be Lydia's mom. While those compliments are good to hear, I have to say that I am no more special that the next mom. While I know that this is not always the case, I would like to believe that any mom would do anything for their child; no matter what it takes. Each one of my children require a different type of parenting and no one will ever know what it is like to raise Allison, Ellen or Lydia besides me and my husband (well all of the other communities that it takes to raise a child, but you get my point!). This is our journey and I vow to continue to do what it takes to raise my child, to give them every opportunity, and to give them a foundation of God, values, respect, and manners. Motherhood is a gift and one that should not be taken lightly. We need to honor that gift and give it our all, after all; every single child deserves that.
I once thought that giving my children stuff and money and things would make good children. Now I know that giving them the opportunities, those foundational cornerstones of a lasting faith, respect, manners, discipline are the best things that I can do for them. By pouring my all into my children I am richly blessed beyond any earthly treasure. I thank God for each of my children, but especially for Lydia because she is the one that caused me to realize my purpose.
With Ellen much of my focus was trying to survive. She was the first, everything was perfect. She was involved in a lot, she was sheltered and she pretty much got everything I thought was right for her. I was in love, I was full of bliss. However, I was without direction. I was longing for her to have lots of friends, to have the perfect toys, the most of everything that did not matter.
Allison came along 19 short months later. Life was challenging. On maternity leave I knew I wanted to stay at home with her. I just knew that my children longed to have me in their lives all of the time and they deserved it. During my maternity leave God heard my cry and I was laid off from my job. I did start part-time at our church almost immediately. But I felt like this was good. We still had enough money to give them all of the necessities and I was mostly focused on them. I felt like I had a little more direction. We discussed faith but I was still focusing on things of this world to make us happy.
We tried for a while to have Lydia. We were just about ready to accept that God had made our family perfect at four when the test (our last one and I said I was buying no more) was positive. We were so happy. At 20 weeks there was a possibility our child would have Down syndrome. This was really "new" to our vocabulary. While we knew people who had children with Down syndrome, and friends who also carried an extra 21st Chromosome, it was new to us. It challenged me to really soul search of what it meant to be a mom and to love beyond myself. After a day or so of living with that possibility we were again elated with this new possibility.
I remember praying on my "prayer bike" (a term my ladies Bible study friends gave to me because I prated out loud while I biked), Lord please let Your Will be done. If this baby has Down syndrome, give me the strength and the wisdom. I also prayed for a healthy baby. My love for our Lord grew each passing day while I awaited this special gift to be born. My faith strengthened and I did not even realize what was happening. God was preparing me.
Again, at 34 weeks another new reality set in. Not only would we be having a child who would carry a little something extra, but there were several complications. I found out that there was a heart defect with our sweet Lydia and other complications that would go undiagnosed until she was born. Now I really had to do some soul searching and figure out how I was going to love this child. No amount of money or stuff could change this situation. However, faith could; however, God is the ultimate healer and He could give me rest when no one else could.
At that point, 34 weeks pregnant I knew that the journey I was now on was going to change me forever, it was going to change me as a mom. The stuff became less important and reading books to the girls and watching them play and interact became super important. Working and making a buck was something of a distant memory. Keeping myself healthy to give Lydia everything she could have was the most important thing possible.
At that moment the legacy that I leave behind (my children) was the most important thing in the world. If we had to live in our car, if we had everything stripped of us; it made no difference. As long as I was with my children, as long as we had our faith, as long as we placed our lives at Jesus' feet, everything would be OK. I am not sure how, but it would be OK.
The next moments, seconds, minutes, hours, days, weeks, months I would rely fully on God to get me through. He would show me the way and give me the strength to get through some of the hardest days of my life. He would show me why it is important to be a mom and what the meaning of life is. The stuff became trivial as time with my children, my husband, my family became the most important thing to me. Making sure that my children had a deep love for the Lord. Making sure that my children were obedient and had manners. Making sure my children understood what respect was and most of all making sure my children saw an example of love, self-less serving love. The kind where you put others before yourself no matter what.
I give thanks to God for giving me Lydia. She saved me. She showed me the importance of being a mom. She taught me one of life's best gift...family. She taught me love and sacrifice. She taught me the value of just being yourself and fighting with everything you have inside of yourself. She taught me why I am a mom and how important that legacy is to leave behind.
You see, just by being her, she will have taught her entire family (and those around her) how to love with your whole heart, how to see things black and white, how to be so determined you prove all of the people wrong, how to break through stereo types, how to break down barriers, how to forgive, how to find joy in everything, and how to cease EVERY moment and make it the most special thing. And she does not have to do anything other than being herself.
I am blessed that I had an amazing mom who gave me this same legacy. She gave me foundational cornerstones that I was able to build my life by. She gave me unconditional love, support, forgiveness. Things were not perfect, but she understood what it was to be a mom and why God had called her to be a mom. She gave her all to her children. I am so proud to be called her daughter and I love her so much. I am not very good at saying that, but I believe that she is one of the most incredible moms. She continues to show that every single day. She, without question, left everything at home to come stay with us at the Ronald McDonald's House to, in essence, raise my other children. She did it with grace and beauty. Thank you mom.
I have also had the privilege to see my sisters raise beautiful families. I long to be closer to them, but often times I am better at shutting people out than letting them in. They parent with such a gentle, caring, giving heart. I am so proud of them and proud to be an auntie of two beautiful nieces and three handsome nephews. I am blessed to be walking in this journey of motherhood with them. I am honored to learn from some great moms. Thank you for being a wonderful influence on me.
As we celebrate Mother's Day this year, I realize how many wonderful mother's God has placed in my life that I may learn from. That I may continue to reach towards that goal of leaving a lasting legacy.
The other day someone told me that I was so special because God chose me to be Lydia's mom. While those compliments are good to hear, I have to say that I am no more special that the next mom. While I know that this is not always the case, I would like to believe that any mom would do anything for their child; no matter what it takes. Each one of my children require a different type of parenting and no one will ever know what it is like to raise Allison, Ellen or Lydia besides me and my husband (well all of the other communities that it takes to raise a child, but you get my point!). This is our journey and I vow to continue to do what it takes to raise my child, to give them every opportunity, and to give them a foundation of God, values, respect, and manners. Motherhood is a gift and one that should not be taken lightly. We need to honor that gift and give it our all, after all; every single child deserves that.
I once thought that giving my children stuff and money and things would make good children. Now I know that giving them the opportunities, those foundational cornerstones of a lasting faith, respect, manners, discipline are the best things that I can do for them. By pouring my all into my children I am richly blessed beyond any earthly treasure. I thank God for each of my children, but especially for Lydia because she is the one that caused me to realize my purpose.
Tuesday, April 30, 2013
What if the shoe DOESEN'T fit?
I think the longer you are around hospitals and doctors and so forth you realize that the science of medicine really has no science to it at all. Most times the treatments, the best path to take is an educated guess. There is no real shoe that fits a diagnosis, a treatment, a path. Often times what seems like it will work does not and the wacky idea is what works. I think being around medicine (I am talking when you have a child who is sick and you have little to no medical background) it can make you go nuts. Nothing ever seems to go the way they think it will and just when you are about to scream, you try something off the wall and it works.
I have been thinking a lot about this lately. I think back to times when Lydia was in the hospital and how frustrated my husband and I would get. They would try and try and try things and it never seemed like it would work. We would get the answer oh this should work now, this drug could have interfered with the angle of the light (OK...that is a little dramatic, but you get the point!). I guess that is why when you hear a drug and the side effects, there is a longer list of side effects than what it is actually "curing." They need to cover all of their bases because there is no one shoe that fits everyone.
We were all created as individuals to love one another, to care for one another, I believe to praise God. I do believe that He created us and we live for Him; this is just our temporary home. But no two of us are alike. Even twins have different minds and interests and looks. They may be similar, but they are still different. God made us all individuals and together we can accomplish great things.
I guess that is no different than Lydia. She was created as an individual. She is Lydia and Down syndrome is something she has, not who she is. We can compare her, we can test her, but ultimately she is going to be who she is, accomplishing things on her time line. Not ours. But no one expected her sisters too and she is no different. You can try to lump her into a group, but she will prove you wrong; she most likely will not fit all of the time. And on a side note: I have been asked several times what level Downs is Lydia. Not sure how to answer that. Again, the shoe does not fit everyone and she will be who God created her to be. My husband gave me a great idea, the next time someone asks me that question tell them that she is a level 5 and just walk away. I think I may. End side note!
The shoe cannot fit everyone. Even in Cinderella we learned that. As much as the step sisters wanted it to fit, they couldn't. It fit perfectly on one person's foot. If we stop trying to be someone we aren't, if we stop trying to make people into persons they are not, I think then we can truly enjoy the blessings in life. We can accept them for who they are and ourselves for all of our faults. Wouldn't our life be much better if we accepted who we are today. That does not mean that we can't change that we can't work to improve ourselves, but just embrace who we are today.
Today Satan has really been attacking me. After a rough day at the doctors I went to the store. I wanted to buy a tub of ice cream to go home and eat and cry. As I walked in the store I kept seeing all of these very pretty ladies who were skinny and appeared to have money. They appeared to be happy and have something that I didn't. As I looked at myself, I had cracker from head to toe from Miss Lydia, I am slightly overweight, but I lacked any kind of confidence.
I should show that I am a proud mom of three beautiful children, yes, I could stand to lose weight, but I try to teach my daughter's the importance of a good self image...NO MATTER WHAT. My clothes are terribly out of date, my hair was actually curled, and I am sure I have no style. However, I have never been a skinny minnie, never will, but I could do a better job at eating healthy and working out more. I have never had any style, so it is not happening now. But I realized that I have the opportunity, the gift to present to my girls a good self image. Because I really don't care about the "looks" my girls don't have to hear me say I am ugly, oh that doesn't fit, I am fat nor do we focus on that as a family. Yes, those comments creep in my head but I am aware of that and try to protect my girls. So if I have to give myself a pat on the back; I do believe I do a pretty good job of that. Now hiding your feelings in ice cream, not so good at that.
What I am trying to say is the shoe does not fit me for being skinny. I am pretty sure the rich shoe would not fit me well either; I am a cheapskate at heart and I enjoy the dirty work! The style shoe does not belong to me either. But there are many other things that do fit and I need to be proud of them. I need to embrace them. God gave me many gifts and if I would stop longing for something else, I could perfect what I have been given.
Lydia will have many different shoes that will fit and many that won't in her life. BUT her sisters will have that too. It is important to focus on the ones that do fit. Sometimes it is draining raising a child with special needs. You constantly go to appointments and testing and therapies to learn the shoes that do not fit. I would encourage everyone to focus on the shoes that do fit. I want to focus on the ones that look beautiful on her and show those off. I don't want her to be uncomfortable in ones that are too high or are too small or too tight...I want her to be comfortable just the way she is.
In many aspects of our lives I think we can find shoes that don't fit. But often times I would say that it is a blessing because it is not who we were created to be. I think when we try to fit into a shoe that is too high, too low, too tight, too small, too big we look silly, we are uncomfortable. Until we find the shoe that fits I believe we will always be out of place.
So today I will focus on who God made me and I will be proud of it. I will focus on who God created my children to be, 46 or 47 Chromosomes does not matter to me. All of them are gifts and have something a little bit different to add. Be proud of who God created you to be and don't worry if the shoe does not fit, there is another one that looks better and is more comfortable. I couldn't imagine Lydia with 46 Chromosomes; she just wouldn't be Lydia.
I have been thinking a lot about this lately. I think back to times when Lydia was in the hospital and how frustrated my husband and I would get. They would try and try and try things and it never seemed like it would work. We would get the answer oh this should work now, this drug could have interfered with the angle of the light (OK...that is a little dramatic, but you get the point!). I guess that is why when you hear a drug and the side effects, there is a longer list of side effects than what it is actually "curing." They need to cover all of their bases because there is no one shoe that fits everyone.
We were all created as individuals to love one another, to care for one another, I believe to praise God. I do believe that He created us and we live for Him; this is just our temporary home. But no two of us are alike. Even twins have different minds and interests and looks. They may be similar, but they are still different. God made us all individuals and together we can accomplish great things.
I guess that is no different than Lydia. She was created as an individual. She is Lydia and Down syndrome is something she has, not who she is. We can compare her, we can test her, but ultimately she is going to be who she is, accomplishing things on her time line. Not ours. But no one expected her sisters too and she is no different. You can try to lump her into a group, but she will prove you wrong; she most likely will not fit all of the time. And on a side note: I have been asked several times what level Downs is Lydia. Not sure how to answer that. Again, the shoe does not fit everyone and she will be who God created her to be. My husband gave me a great idea, the next time someone asks me that question tell them that she is a level 5 and just walk away. I think I may. End side note!
The shoe cannot fit everyone. Even in Cinderella we learned that. As much as the step sisters wanted it to fit, they couldn't. It fit perfectly on one person's foot. If we stop trying to be someone we aren't, if we stop trying to make people into persons they are not, I think then we can truly enjoy the blessings in life. We can accept them for who they are and ourselves for all of our faults. Wouldn't our life be much better if we accepted who we are today. That does not mean that we can't change that we can't work to improve ourselves, but just embrace who we are today.
Today Satan has really been attacking me. After a rough day at the doctors I went to the store. I wanted to buy a tub of ice cream to go home and eat and cry. As I walked in the store I kept seeing all of these very pretty ladies who were skinny and appeared to have money. They appeared to be happy and have something that I didn't. As I looked at myself, I had cracker from head to toe from Miss Lydia, I am slightly overweight, but I lacked any kind of confidence.
I should show that I am a proud mom of three beautiful children, yes, I could stand to lose weight, but I try to teach my daughter's the importance of a good self image...NO MATTER WHAT. My clothes are terribly out of date, my hair was actually curled, and I am sure I have no style. However, I have never been a skinny minnie, never will, but I could do a better job at eating healthy and working out more. I have never had any style, so it is not happening now. But I realized that I have the opportunity, the gift to present to my girls a good self image. Because I really don't care about the "looks" my girls don't have to hear me say I am ugly, oh that doesn't fit, I am fat nor do we focus on that as a family. Yes, those comments creep in my head but I am aware of that and try to protect my girls. So if I have to give myself a pat on the back; I do believe I do a pretty good job of that. Now hiding your feelings in ice cream, not so good at that.
What I am trying to say is the shoe does not fit me for being skinny. I am pretty sure the rich shoe would not fit me well either; I am a cheapskate at heart and I enjoy the dirty work! The style shoe does not belong to me either. But there are many other things that do fit and I need to be proud of them. I need to embrace them. God gave me many gifts and if I would stop longing for something else, I could perfect what I have been given.
Lydia will have many different shoes that will fit and many that won't in her life. BUT her sisters will have that too. It is important to focus on the ones that do fit. Sometimes it is draining raising a child with special needs. You constantly go to appointments and testing and therapies to learn the shoes that do not fit. I would encourage everyone to focus on the shoes that do fit. I want to focus on the ones that look beautiful on her and show those off. I don't want her to be uncomfortable in ones that are too high or are too small or too tight...I want her to be comfortable just the way she is.
In many aspects of our lives I think we can find shoes that don't fit. But often times I would say that it is a blessing because it is not who we were created to be. I think when we try to fit into a shoe that is too high, too low, too tight, too small, too big we look silly, we are uncomfortable. Until we find the shoe that fits I believe we will always be out of place.
So today I will focus on who God made me and I will be proud of it. I will focus on who God created my children to be, 46 or 47 Chromosomes does not matter to me. All of them are gifts and have something a little bit different to add. Be proud of who God created you to be and don't worry if the shoe does not fit, there is another one that looks better and is more comfortable. I couldn't imagine Lydia with 46 Chromosomes; she just wouldn't be Lydia.
Thursday, April 25, 2013
Comfortable Clothes
Many times children with Down syndrome are referred to as having Designer Genes. They are specially created with 47 Chromosomes rather than the normal 46. They have one extra gene that makes them totally special. They have 3 copies of the 21st Chromosome rather than 2. They are special, there is no doubt about it. However what about this Designer Gene thing?
I have been thinking about this lately. Maybe it has been because I have been wearing a lot of comfortable clothes. Things have been a bit stressful around our house and most days I don't have the energy to make myself look pretty, to dress in anything than what makes me comfortable. What is wrong with that? As long as I am comfortable right?
There are many things that Lydia has taught me. There are so many lessons that she reminds me of daily. She is just 21 months today and yet she has changed my entire perspective on life. She has taught me more in the past 21 months than I have learned in my 32 years on this earth. Many people may argue how a 21 month old could change you, but I would encourage you to think back of the first time you held your child, how they took your breath away. I would encourage you to think about how you could love someone you did not even know. She has changed me because she is who she is.
And maybe she has not changed me as much as what the label that she caries has taught me. As a society we chose to label Designer Genes as bad (this is funny because many people spend WAAAAYYY too much money on these jeans to fit in or to look a part). As a society we stereotype and say that they will never be this or that. People are often very quick to voice their negative opinion. However, every single day she defies that label that make her Lydia, just by being herself.
Every day she meets a new milestone in her time and in her way. She looks around with a BIG CHEESY smile and waits for you to clap and cheer her on. She is oblivious to the outside world and what they say. Each day she sets her heart out to do a new task. She is determined and nothing, no label or stereotype, will stand in her way. Despite any bad (the needles, constant doctor appointments, people poking and parading at her, mommy making her take medicine she does not want) she has a smile on her face and goes about her business.
She feels just as we feel. She feels in a deeper way. She is mostly happy, but she does get upset and frustrated, sad and angry. She loves hugs and kisses and smiles. Most of all she loves to give other people high fives and watch them smile. You see, watching others around her be happy makes her happy. When there is yelling and fighting in our house, she does not tolerate that well. She will crawl over to you and hug you or kiss you. You see, she only knows how to be herself. She does not know how to fit into a label, she does not know stereotypes, she only knows to be the person God created her to be.
She is comfortable in her Designer Genes. She wears them well and they look so good on her! She can teach you a lot about her Designer Genes and what they really mean. They are not meant to be worn to classify you as someone who is cool or popular. They are not meant to be worn to be looked as bad or not as capable as someone else. They are meant to be worn proudly and comfortably. They are meant to be worn as part of who you are.
So as I sit in my comfortable clothes I think about how comfortable I really am. Do I LOVE who I am? Do I feel OK in my skin? What do I do for other people? What makes me who I am? Is it how I look or what I wear? Does my own skin fit who I am trying to be?
I have a lot to learn from Lydia. You see, she is comfortable where she is, I am not. I am always trying to improve my look. I am trying to loose more weight, dress to fit in, have the latest and greatest, spend waaaayyyy too much time and money on makeup and beauty products that portray a fake Tiffany. All I need to do is look at who God created me to be and be that person. Yes, sometimes the outward appearance helps me to feel better, but you see, that never really changes who I am, in never changes the inward appearance. I can pretend on the outside to be someone else, but I am still the same unhappy discontent person on the inside.
Maybe you have to experience to understand it, but she is my role model. She teaches me about me more than I know. She is comfortable in the skin she was born in and she is proud to display that. She does things because that is who she is, not because someone tells her to, because she needs to live up to a certain standard, but because she is being exactly who God created her to be.
I think we have it all wrong as a society. We label Lydia when I would argue that we are all longing to be as comfortable in our own Designer Genes she is. I think we all long to be confident in the skin God created us in. I am sure there will be days when she wants to fit in, that will be hard; but I am sure the days will be far less than what my other girls experience. You see, there is a twinkle in Lydia's eyes that you can see that is different and I want that twinkle.
I am the blessed one because I have that role model each and every day to help me learn. I am a far from being comfortable in my "comfy clothes" but I am sure going to try. I want my kids to have the kind of role model that Lydia is. I want their mommy to be comfortable in her own skin, to be confident and to be who God created her to be. I don't want to dress to fit in, but I want to be who I was created to be. I want to wear my own Designer Genes as comfortably and confidently as Lydia does.
I have been thinking about this lately. Maybe it has been because I have been wearing a lot of comfortable clothes. Things have been a bit stressful around our house and most days I don't have the energy to make myself look pretty, to dress in anything than what makes me comfortable. What is wrong with that? As long as I am comfortable right?
There are many things that Lydia has taught me. There are so many lessons that she reminds me of daily. She is just 21 months today and yet she has changed my entire perspective on life. She has taught me more in the past 21 months than I have learned in my 32 years on this earth. Many people may argue how a 21 month old could change you, but I would encourage you to think back of the first time you held your child, how they took your breath away. I would encourage you to think about how you could love someone you did not even know. She has changed me because she is who she is.
And maybe she has not changed me as much as what the label that she caries has taught me. As a society we chose to label Designer Genes as bad (this is funny because many people spend WAAAAYYY too much money on these jeans to fit in or to look a part). As a society we stereotype and say that they will never be this or that. People are often very quick to voice their negative opinion. However, every single day she defies that label that make her Lydia, just by being herself.
Every day she meets a new milestone in her time and in her way. She looks around with a BIG CHEESY smile and waits for you to clap and cheer her on. She is oblivious to the outside world and what they say. Each day she sets her heart out to do a new task. She is determined and nothing, no label or stereotype, will stand in her way. Despite any bad (the needles, constant doctor appointments, people poking and parading at her, mommy making her take medicine she does not want) she has a smile on her face and goes about her business.
She feels just as we feel. She feels in a deeper way. She is mostly happy, but she does get upset and frustrated, sad and angry. She loves hugs and kisses and smiles. Most of all she loves to give other people high fives and watch them smile. You see, watching others around her be happy makes her happy. When there is yelling and fighting in our house, she does not tolerate that well. She will crawl over to you and hug you or kiss you. You see, she only knows how to be herself. She does not know how to fit into a label, she does not know stereotypes, she only knows to be the person God created her to be.
She is comfortable in her Designer Genes. She wears them well and they look so good on her! She can teach you a lot about her Designer Genes and what they really mean. They are not meant to be worn to classify you as someone who is cool or popular. They are not meant to be worn to be looked as bad or not as capable as someone else. They are meant to be worn proudly and comfortably. They are meant to be worn as part of who you are.
So as I sit in my comfortable clothes I think about how comfortable I really am. Do I LOVE who I am? Do I feel OK in my skin? What do I do for other people? What makes me who I am? Is it how I look or what I wear? Does my own skin fit who I am trying to be?
I have a lot to learn from Lydia. You see, she is comfortable where she is, I am not. I am always trying to improve my look. I am trying to loose more weight, dress to fit in, have the latest and greatest, spend waaaayyyy too much time and money on makeup and beauty products that portray a fake Tiffany. All I need to do is look at who God created me to be and be that person. Yes, sometimes the outward appearance helps me to feel better, but you see, that never really changes who I am, in never changes the inward appearance. I can pretend on the outside to be someone else, but I am still the same unhappy discontent person on the inside.
Maybe you have to experience to understand it, but she is my role model. She teaches me about me more than I know. She is comfortable in the skin she was born in and she is proud to display that. She does things because that is who she is, not because someone tells her to, because she needs to live up to a certain standard, but because she is being exactly who God created her to be.
I think we have it all wrong as a society. We label Lydia when I would argue that we are all longing to be as comfortable in our own Designer Genes she is. I think we all long to be confident in the skin God created us in. I am sure there will be days when she wants to fit in, that will be hard; but I am sure the days will be far less than what my other girls experience. You see, there is a twinkle in Lydia's eyes that you can see that is different and I want that twinkle.
I am the blessed one because I have that role model each and every day to help me learn. I am a far from being comfortable in my "comfy clothes" but I am sure going to try. I want my kids to have the kind of role model that Lydia is. I want their mommy to be comfortable in her own skin, to be confident and to be who God created her to be. I don't want to dress to fit in, but I want to be who I was created to be. I want to wear my own Designer Genes as comfortably and confidently as Lydia does.
Monday, April 15, 2013
Sting
Sometimes it amazes me how fast sin can creep into our lives. When we least expect it, there is the sin staring us in the face. And for me, most times I am caught off guard. There seems to be something going on with me and I can't put a finger on it. After a couple days of prayers, readings, and meditation, I often times find out that sin has taken over in some area of my life. I normally have a hard time with my thoughts; they seem to run and never stop. I have to stand back and continually ask God to take them captive.
I think that I have shared over and over that the past couple of months have been a bit rough for us. It just seems like one thing after another, and there is no break in sight. The storms have raged and the water has flooded our lives. But we still find a way to build a relationship with God, a stronger marriage than the day before and we try to parent our children the very best way we can. I think that is what we all would do. After much reflection, however, I have come to realize that sin has crept in my way. Although, I am SO GRATEFUL for my experiences, for this journey God has given me, I have felt pretty lost.
Mostly because jealousy and discontentment have set in on me. While I try to say I am so thankful, in my deep thoughts I yearn for something different. I decided that if I write them down, they will be real and I can deal with them and move forward. I think when sin has flooded me and caught me off guard I try to make excuses. So I am forcing myself, today, to confront these nasty voices in my head that have been consuming me.
I am jealous at people who are able to go out with their spouse without a constant worry of a child. I have always worried about my other kids, but with Lydia it is different. There is so much about her, so many things that could go wrong. Eric and I have gone out very little in the past two years. And it is not because I am being an over-protective mom, it is because I am doing what I have to to keep my child safe from harm. It gets to me to hear people doing this and doing that. I am happy for them, but I wish that we could do it to.
This past weekend there was a woman's spring fling at church. How I longed to go to that. I couldn't. My child was sick, she needed me. The first call that God has given me is a mother these days, and I have to protect His child. I wanted to be there, I wanted to be in fellowship. learning and growing. I also did not want to face the guilt because I was not there. The comments made by people who just don't understand the situation. It is hard. I try really hard to give them grace, but inside I am screaming...you just don't understand. You have no clue what it is like.
There have been many events that I have had to miss because of a sick child, no one to watch her, or it is just not the best thing for her. I had to miss saying goodbye to one of my childhood pays as they laid him to rest. I had to miss going to benefits for other sick kids, to support their families. I have had to miss out on my favorite Easter service, fellowship opportunities, Birthday parties, family events. But in the end it is worth it. I was given a job to protect this child, to give her the very best life I can, I do believe that I am doing that. While it is hard, there are so many blessings she brings.
I have had to watch friends distance themselves from me because our lives are too different. Yes, my entire life changed, I changed, but it is hard to watch "friends" come and go. They go on with their life, while I am here, sitting rocking a child, going to multiple doctors appointments, trying to figure out what is wrong with my child. It is really a feeling of isolation. I have made some super new friendships, but I miss some of my old ones. People who use to call me and ask to do something, who hardly look at me in passing. My heart aches. I didn't ask for this, this is the path I was given. I will live it to the fullest and if you are not suppose to be part of it, then I will accept it. It does not mean that it does not hurt me.
All of our "extra" financial resources have gone to pay for gas to get Lydia to and from doctor visits, to pay for extra supplements, drinks that are not covered by insurance and I can continue naming. Eric has had to take many days unpaid, just so there is sometime to use for actual vacation time with the other girls. There has been family who has stepped up to help us big time, and we are so grateful. But it does suck, your financial resources are drained and you feel like a constant charity case with your family. We did plan financially for the our third kid, but never in a million years did we expect this. And having to tell your girls that the pool is no longer good, something they look forward to each year was a hard reality of that financial issue that many families face who have a medically challenged child. The pool liner did not make it through the winter months, and we just are not able to afford another one, so we had to tell them no. I am sure there will be many more things like that too. However, it is never gets easier. I feel like those girls have been robbed of so much, it just is hard to continue taking things away. It is a struggle and it adds to all of the other mounting stress. I know the girls are learning great lessons, they are seeing devotion and love like many never get to experience, but sometimes you would just like to say yes and give them something more. However, God is a faithful provider and He will continue to provide. None of us go without anything and we are grateful for that. There is always a hot meal on the table, gas in our car to make it to the next appointment, clothes (and I might add choice of clothes), heat, warm bed, insurance, the doctor bills workable. I am not trying to make a pity here by saying this, but simply stating a fact...it is hard. That sin has worked its way in and I have believed that I deserve everything that the next person has. But that is only a lie. God has provided abundantly and I need to be thankful for that!
I see people post things of their kids doing different activities on Facebook. Many of them the same age as Lydia. She is no where near that. While we are so excited about the accomplishments she does, where she has come from and where she is today, it still stings sometimes. It is hard. Sometimes, as much as I love our journey, love Lydia and would not trade her for ANYTHING, those broken dreams of having a child who has special needs are still there. Every now and again those feelings creep in and get you in a way you were not expecting. It is hard. And please know that I don't wish her to be anything else, I am happy with her and our journey, but I am being honest about these thoughts that run in my head at times, this sin that consumes me.
The pain of watching your child go through medical procedure after medical procedure is hard. The constant phone calls of trying to figure out what is wrong with your child with no answers. Waking your child in the middle of the night to give them medicine to only have to make them cry, wretch, and gag to get it down. The hours of consoling pain that you cannot find where it is coming from. The hours that you spend teaching your child to accomplish something, when it took your other daughters only moments to figure out with no help at all. The pain is real, the hurt is there, and sometimes it is just hard to say it is going to be alright. I know God is there in all of it, I feel Him holding me. But sometimes it just does not feel OK, yet that is when we must allow Him to pick us up and carry us. He does, He has been carrying me for months now.
Sometimes just know that other people are not going to get it because it is your journey. To always try to see God's Hand at work, and to be joyful over every moment, no matter how big or how small. And sometimes just being honest, letting out all of those nasty feelings, is the best way to let go and let God. It is the best way to understand that most of this is perfectly normal, as long as we don't allow ourselves to stay in that place. While everyone tells me it is just a season, I understand, but sometimes that stings harder because there does not seem to be an end in sight. Sometimes just listening and allowing someone to vent is the very best medicine!
Sometimes on this journey, no different from my other girls, it just gets hard. So thank for listening, encouraging me, and just being there for me. Those are the best things you can do for me! I thank God for giving me this journey and allowing me to learn all of these great lessons!
I think that I have shared over and over that the past couple of months have been a bit rough for us. It just seems like one thing after another, and there is no break in sight. The storms have raged and the water has flooded our lives. But we still find a way to build a relationship with God, a stronger marriage than the day before and we try to parent our children the very best way we can. I think that is what we all would do. After much reflection, however, I have come to realize that sin has crept in my way. Although, I am SO GRATEFUL for my experiences, for this journey God has given me, I have felt pretty lost.
Mostly because jealousy and discontentment have set in on me. While I try to say I am so thankful, in my deep thoughts I yearn for something different. I decided that if I write them down, they will be real and I can deal with them and move forward. I think when sin has flooded me and caught me off guard I try to make excuses. So I am forcing myself, today, to confront these nasty voices in my head that have been consuming me.
I am jealous at people who are able to go out with their spouse without a constant worry of a child. I have always worried about my other kids, but with Lydia it is different. There is so much about her, so many things that could go wrong. Eric and I have gone out very little in the past two years. And it is not because I am being an over-protective mom, it is because I am doing what I have to to keep my child safe from harm. It gets to me to hear people doing this and doing that. I am happy for them, but I wish that we could do it to.
This past weekend there was a woman's spring fling at church. How I longed to go to that. I couldn't. My child was sick, she needed me. The first call that God has given me is a mother these days, and I have to protect His child. I wanted to be there, I wanted to be in fellowship. learning and growing. I also did not want to face the guilt because I was not there. The comments made by people who just don't understand the situation. It is hard. I try really hard to give them grace, but inside I am screaming...you just don't understand. You have no clue what it is like.
There have been many events that I have had to miss because of a sick child, no one to watch her, or it is just not the best thing for her. I had to miss saying goodbye to one of my childhood pays as they laid him to rest. I had to miss going to benefits for other sick kids, to support their families. I have had to miss out on my favorite Easter service, fellowship opportunities, Birthday parties, family events. But in the end it is worth it. I was given a job to protect this child, to give her the very best life I can, I do believe that I am doing that. While it is hard, there are so many blessings she brings.
I have had to watch friends distance themselves from me because our lives are too different. Yes, my entire life changed, I changed, but it is hard to watch "friends" come and go. They go on with their life, while I am here, sitting rocking a child, going to multiple doctors appointments, trying to figure out what is wrong with my child. It is really a feeling of isolation. I have made some super new friendships, but I miss some of my old ones. People who use to call me and ask to do something, who hardly look at me in passing. My heart aches. I didn't ask for this, this is the path I was given. I will live it to the fullest and if you are not suppose to be part of it, then I will accept it. It does not mean that it does not hurt me.
All of our "extra" financial resources have gone to pay for gas to get Lydia to and from doctor visits, to pay for extra supplements, drinks that are not covered by insurance and I can continue naming. Eric has had to take many days unpaid, just so there is sometime to use for actual vacation time with the other girls. There has been family who has stepped up to help us big time, and we are so grateful. But it does suck, your financial resources are drained and you feel like a constant charity case with your family. We did plan financially for the our third kid, but never in a million years did we expect this. And having to tell your girls that the pool is no longer good, something they look forward to each year was a hard reality of that financial issue that many families face who have a medically challenged child. The pool liner did not make it through the winter months, and we just are not able to afford another one, so we had to tell them no. I am sure there will be many more things like that too. However, it is never gets easier. I feel like those girls have been robbed of so much, it just is hard to continue taking things away. It is a struggle and it adds to all of the other mounting stress. I know the girls are learning great lessons, they are seeing devotion and love like many never get to experience, but sometimes you would just like to say yes and give them something more. However, God is a faithful provider and He will continue to provide. None of us go without anything and we are grateful for that. There is always a hot meal on the table, gas in our car to make it to the next appointment, clothes (and I might add choice of clothes), heat, warm bed, insurance, the doctor bills workable. I am not trying to make a pity here by saying this, but simply stating a fact...it is hard. That sin has worked its way in and I have believed that I deserve everything that the next person has. But that is only a lie. God has provided abundantly and I need to be thankful for that!
I see people post things of their kids doing different activities on Facebook. Many of them the same age as Lydia. She is no where near that. While we are so excited about the accomplishments she does, where she has come from and where she is today, it still stings sometimes. It is hard. Sometimes, as much as I love our journey, love Lydia and would not trade her for ANYTHING, those broken dreams of having a child who has special needs are still there. Every now and again those feelings creep in and get you in a way you were not expecting. It is hard. And please know that I don't wish her to be anything else, I am happy with her and our journey, but I am being honest about these thoughts that run in my head at times, this sin that consumes me.
The pain of watching your child go through medical procedure after medical procedure is hard. The constant phone calls of trying to figure out what is wrong with your child with no answers. Waking your child in the middle of the night to give them medicine to only have to make them cry, wretch, and gag to get it down. The hours of consoling pain that you cannot find where it is coming from. The hours that you spend teaching your child to accomplish something, when it took your other daughters only moments to figure out with no help at all. The pain is real, the hurt is there, and sometimes it is just hard to say it is going to be alright. I know God is there in all of it, I feel Him holding me. But sometimes it just does not feel OK, yet that is when we must allow Him to pick us up and carry us. He does, He has been carrying me for months now.
Sometimes just know that other people are not going to get it because it is your journey. To always try to see God's Hand at work, and to be joyful over every moment, no matter how big or how small. And sometimes just being honest, letting out all of those nasty feelings, is the best way to let go and let God. It is the best way to understand that most of this is perfectly normal, as long as we don't allow ourselves to stay in that place. While everyone tells me it is just a season, I understand, but sometimes that stings harder because there does not seem to be an end in sight. Sometimes just listening and allowing someone to vent is the very best medicine!
Sometimes on this journey, no different from my other girls, it just gets hard. So thank for listening, encouraging me, and just being there for me. Those are the best things you can do for me! I thank God for giving me this journey and allowing me to learn all of these great lessons!
Saturday, April 13, 2013
Have I?!?!?!
Have I always been open and inclusive of people different than me? I am sure that I would have argued with you that it was. I am sure that I would have said that I accepted all kinds of people and did not pass judgment, but really the only person I was fooling was myself. If I am totally honest, and that is what I intend to do in this post so I can see it in black and white, my mind never really became open until that situation that I judged became my reality. I feel that it is important for people to understand, but more importantly those of us walking a journey raising a differently-abled child!
I have walked by someone with a disability and thought man, I am sure glad that is not my fight. I have heard of someone who was diagnosed with cancer and the road never seemed to go anywhere but in a circle for the family and now death was staring them in the face. I have walked by a person in a wheelchair and thought I am glad I have sisters who are able to do "normal" things. I have walked by someone having a melt down and thought, control your child, that is so rude. I guess I am glad that other people are not in my head, there are not nice thoughts most of the time.
I am sure we have all had those thoughts. We judge before we know the situation, before we understand what is going on, before we are able to be in those shoes walking their life. How unfair is that? I have had that tendency my whole life, but I need to fight against it. I need to ask God to take my thoughts captive and be more loving towards everyone. After all He created all of us for a purpose and a plan. And I would say that it is not just a "disability" but anyone who does not look like me, does not act like me or does not think like me. Yeah, pretty small population that I don't judge; mainly me and my family.
It may seem like I am being crude here, but I am just being honest. I am sure that I am not the only person who, maybe out of fear, judged someone differently than me. I was uneducated and never took the time to educate myself, to surround myself with people who are different than me. For whatever reason I passed a judgment that was unfair. I looked down on someone when I should have been lending my hand out. I am sure someone can look at me and judge me just the same way. I am far from a perfect person. I have many more flaws than I do good points! I am human, I am a sinner.
So I was blessed with Lydia. We prayed for each of our children, we never found out boy or girl because it did not matter, we wanted a surprise. We prayed for a healthy child, but never considered the "unhealthy" child. When we found out that our baby may have Down syndrome, the shock came in. However, after a day or so, we were excited. We thought about how blessed we were. We really did not care what the diagnosis was because we would love our child no matter what. However, I think when we thought about a child with Downy syndrome; we never considered medical complications too.
We prayed and tried for a long time for our third child. We got pregnant. It was a mostly normal pregnancy until the end. I did not smoke, I did not drink caffeine, I did not drink, I exercised, I took my prenatal vitamins. I did everything the way I was suppose to. The fact is, a disability does not discriminate against anyone trying to have a baby. I strongly believe God gives us just what we need. Many of us don't know we need someone who is different than us or different than our expectations until we unwrap that gift.
The thing about life is there are no guarantees. I realize we all wish we knew what the future holds, but really all we have is faith to cling to. I have my hope in Jesus to carry me through each day. He is the only thing that is for certain in this world of uncertainty. I could get pregnant and lose the baby, I could have a perfectly healthy child, I could have a child with severe complications, I could have a child who has problems breathing. I also could have a perfectly healthy baby to find out later in life that there are complications, a car accident, cancer, a sudden death.
So what happens when that situation that you wished was not yours has now become your reality? What happens when your entire life turns upside down because you love your child, because you would do ANYTHING for your child? What happens when you have to lose everything to love your child, to take care of your child? What happens when you are that parent standing there while your child is breaking down and other people are staring at you? What happens when you are in the store and the little girl comes up to the cart and stares at your baby because they are on oxygen? What happens when that situation that you never thought you would deal with is your new reality?
I realize that no one will know what it is like to walk in my shoes, other than me. However, my point is that I thought that I was open minded and that I was accepting and inclusive. But I wasn't. I realize that now because of Lydia. A whole new world has been open to me. It is amazing how God works. It is almost as a new level of love has been shown to me. Not better, just different. I understand better and I see differently.
And I have seen that on this journey. I see the transformation of people who get to know Lydia, understand the medical side of things and see how their life is changed. It is one of the greatest blessings that I get to be part of. I can't describe it, but it is amazing. That is just one small part of this amazing journey. Fear, sadness, grief, anger, love, confusion, guilt are some of the emotions that were standing in my way of realizing this huge blessing. By educating and surrounding myself with people who are not me, I get to enjoy this journey God has placed me on. I get to learn and grow and most importantly I get to be a mom to one very amazing child and two other girls who are so much better because of her. They get it, they are learning things that cannot be taught, but must be experienced.
I wanted to remind you that a disability does not discriminate against people. No one is "safe" from having a child with some kind of complication; either at birth or some where in life. However, we can discriminate against the person because they are different, because we don't understand. Ask yourself the question, "Have I?" Make sure to do something about it if you don't like your answer!
I have walked by someone with a disability and thought man, I am sure glad that is not my fight. I have heard of someone who was diagnosed with cancer and the road never seemed to go anywhere but in a circle for the family and now death was staring them in the face. I have walked by a person in a wheelchair and thought I am glad I have sisters who are able to do "normal" things. I have walked by someone having a melt down and thought, control your child, that is so rude. I guess I am glad that other people are not in my head, there are not nice thoughts most of the time.
I am sure we have all had those thoughts. We judge before we know the situation, before we understand what is going on, before we are able to be in those shoes walking their life. How unfair is that? I have had that tendency my whole life, but I need to fight against it. I need to ask God to take my thoughts captive and be more loving towards everyone. After all He created all of us for a purpose and a plan. And I would say that it is not just a "disability" but anyone who does not look like me, does not act like me or does not think like me. Yeah, pretty small population that I don't judge; mainly me and my family.
It may seem like I am being crude here, but I am just being honest. I am sure that I am not the only person who, maybe out of fear, judged someone differently than me. I was uneducated and never took the time to educate myself, to surround myself with people who are different than me. For whatever reason I passed a judgment that was unfair. I looked down on someone when I should have been lending my hand out. I am sure someone can look at me and judge me just the same way. I am far from a perfect person. I have many more flaws than I do good points! I am human, I am a sinner.
So I was blessed with Lydia. We prayed for each of our children, we never found out boy or girl because it did not matter, we wanted a surprise. We prayed for a healthy child, but never considered the "unhealthy" child. When we found out that our baby may have Down syndrome, the shock came in. However, after a day or so, we were excited. We thought about how blessed we were. We really did not care what the diagnosis was because we would love our child no matter what. However, I think when we thought about a child with Downy syndrome; we never considered medical complications too.
We prayed and tried for a long time for our third child. We got pregnant. It was a mostly normal pregnancy until the end. I did not smoke, I did not drink caffeine, I did not drink, I exercised, I took my prenatal vitamins. I did everything the way I was suppose to. The fact is, a disability does not discriminate against anyone trying to have a baby. I strongly believe God gives us just what we need. Many of us don't know we need someone who is different than us or different than our expectations until we unwrap that gift.
The thing about life is there are no guarantees. I realize we all wish we knew what the future holds, but really all we have is faith to cling to. I have my hope in Jesus to carry me through each day. He is the only thing that is for certain in this world of uncertainty. I could get pregnant and lose the baby, I could have a perfectly healthy child, I could have a child with severe complications, I could have a child who has problems breathing. I also could have a perfectly healthy baby to find out later in life that there are complications, a car accident, cancer, a sudden death.
So what happens when that situation that you wished was not yours has now become your reality? What happens when your entire life turns upside down because you love your child, because you would do ANYTHING for your child? What happens when you have to lose everything to love your child, to take care of your child? What happens when you are that parent standing there while your child is breaking down and other people are staring at you? What happens when you are in the store and the little girl comes up to the cart and stares at your baby because they are on oxygen? What happens when that situation that you never thought you would deal with is your new reality?
I realize that no one will know what it is like to walk in my shoes, other than me. However, my point is that I thought that I was open minded and that I was accepting and inclusive. But I wasn't. I realize that now because of Lydia. A whole new world has been open to me. It is amazing how God works. It is almost as a new level of love has been shown to me. Not better, just different. I understand better and I see differently.
And I have seen that on this journey. I see the transformation of people who get to know Lydia, understand the medical side of things and see how their life is changed. It is one of the greatest blessings that I get to be part of. I can't describe it, but it is amazing. That is just one small part of this amazing journey. Fear, sadness, grief, anger, love, confusion, guilt are some of the emotions that were standing in my way of realizing this huge blessing. By educating and surrounding myself with people who are not me, I get to enjoy this journey God has placed me on. I get to learn and grow and most importantly I get to be a mom to one very amazing child and two other girls who are so much better because of her. They get it, they are learning things that cannot be taught, but must be experienced.
I wanted to remind you that a disability does not discriminate against people. No one is "safe" from having a child with some kind of complication; either at birth or some where in life. However, we can discriminate against the person because they are different, because we don't understand. Ask yourself the question, "Have I?" Make sure to do something about it if you don't like your answer!
Tuesday, April 9, 2013
Whispers
I am currently doing a Bible study on being grateful. I sure have a long way to be grateful as Jesus calls me to, I have learned that it is about conditioning the heart, training my heart to be grateful in everything. After all, Jesus died for me, I did not deserve it (still don't), so no matter how bad things get, I ALWAYS have something to be thankful for.
Lately, Lydia has been waking during the night. Normally she sleeps right through the night. She has always been a great sleeper. However she has not been feeling well so we usually are up with her. At our Bible study the other day we talked about being thankful at all times of the day. So this morning when she started crying, I woke up and started grumbling. Then I remembered to be thankful, this is another time that I can give thanks to God. I did. It was amazing. I want to share with you my "whispers" from my daughter and what it teaches me in life. What another great blessing she has taught me!
This morning you woke and started whispering to me in your cute soft cry. I picked you up out of your crib and you hugged me tight. You cooed and smiled all the way down the stairs. Your little hand started to sign milk. You drank and drank until your little tummy was full. You sat on my lap and smiled and melted my heart.
You are always whispering things to me, but often times I miss it. I am too busy with life or I am too concerned about you eating or what I have to get done around the house. But this morning, you had my attention, you were pulling at my heart strings.
You whisper to me in many different ways. You always have a story to tell. Sometimes it is with your sweet soft cry, or a huge vicious cry. Sometimes you take your hands and run them through my hair and whisper to me. Sometimes you hug me and pat my shoulder ever so gently. Your smile can tell a thousand words to make any one's mood change. Your pouty face is enough to make the sourest faces turn to a laugh. You have so many expressions and each one of them whispers to me.
This morning as the soft gentle light was shining on your face, you smiled with such delight. You were whispering to me, "Mommy I know it is early, but I just wanted to hang out with you. I wanted to see you and smile to you. I wanted you to sing to me and tell me stories." Your face spoke a thousand words to me. The smile you gave me told me everything was going to be OK.
As you turned to hug me, I know that you felt the stress in mommy's body. You patted my shoulder and I knew everything was going to be OK. I know you are not fretting or worrying, I know you are trusting and walking the path God has laid before you without any hesitation. Your pat reminded me how faithful your love is and how I need to be better at that. Your pat reminded me that I need to be stronger for you.
You started to sing to me. You have a very pretty voice and all kinds of things to say. You were singing the Psalms I believe! You were rejoicing and getting me to sing along with you. You have a way to make even the saddest people realize the joy they have in this world. You have a gift that whispers right to my heart, to look at the world through your eyes, non judgemental, just with a pure heart.
You reached your cute small hand up to my head and started to twirl my hair. You were starting to get sleepy, but you wanted to make sure mommy was OK. You were playing with my hair, eyes fading in and out, and you were talking; telling me how much you loved me. You would nod and smile and then you would open one eye to make sure I was still looking at your precious face. You were whispering to me and telling me to keep the faith, to keep pressing on. You were reminding me of these great silent moments where you just whisper to my heart! I often over look them, but I am blessed that you keep reminding me about them.
As you nuzzled in to sleep, you were singing and talking to me. You were telling me of your hopes and dreams. You were telling me of what you endured and how much better you are because of everything you went through. You were thankful that you have a great story to tell others. You were whispering to me about what you would accomplish in life. How you would keep surprising everyone and keeping everyone on their toes. You whispered into my ear well beyond when you were fast asleep.
When you woke, you had a smile on your face. You were still whispering to me your dreams. I pray for you precious baby, God has His hand on you and you have already done great things. I am so excited to see what else He has in store for you.
I realized at that point about how blessed I truly am. There is a love, a pure joy there that is so much different from my other children. There is a purity that cannot be stained. There is a sense of complete love, the kind of love that can only come from our Father. There is an innocence that is untouched and won't be lost. She has something about her that I cannot describe, but it whispered so deeply to my hear that I am forever changed.
In quite moments of the mornings I think we learn so many important things. For me, it was what she really means to me. How much she really has changed my life, how blessed I am. I needed that in more ways than one. I have struggled with our path the good Lord has set before us. We have had many trials and tribulations lately. And through it all, she is constantly smiling, growing, learning, developing, and affecting every one she meets.
My words do no justice of what she means to me, the impact she has on my life. But as I could have listed off a million and one reasons to complain and mumble this morning, she whispered to me life's greatest blessings! (what an impact it made on my day...it still was a very hard day; but so much better to start off with the whispers of her heart)
Lately, Lydia has been waking during the night. Normally she sleeps right through the night. She has always been a great sleeper. However she has not been feeling well so we usually are up with her. At our Bible study the other day we talked about being thankful at all times of the day. So this morning when she started crying, I woke up and started grumbling. Then I remembered to be thankful, this is another time that I can give thanks to God. I did. It was amazing. I want to share with you my "whispers" from my daughter and what it teaches me in life. What another great blessing she has taught me!
This morning you woke and started whispering to me in your cute soft cry. I picked you up out of your crib and you hugged me tight. You cooed and smiled all the way down the stairs. Your little hand started to sign milk. You drank and drank until your little tummy was full. You sat on my lap and smiled and melted my heart.
You are always whispering things to me, but often times I miss it. I am too busy with life or I am too concerned about you eating or what I have to get done around the house. But this morning, you had my attention, you were pulling at my heart strings.
You whisper to me in many different ways. You always have a story to tell. Sometimes it is with your sweet soft cry, or a huge vicious cry. Sometimes you take your hands and run them through my hair and whisper to me. Sometimes you hug me and pat my shoulder ever so gently. Your smile can tell a thousand words to make any one's mood change. Your pouty face is enough to make the sourest faces turn to a laugh. You have so many expressions and each one of them whispers to me.
This morning as the soft gentle light was shining on your face, you smiled with such delight. You were whispering to me, "Mommy I know it is early, but I just wanted to hang out with you. I wanted to see you and smile to you. I wanted you to sing to me and tell me stories." Your face spoke a thousand words to me. The smile you gave me told me everything was going to be OK.
As you turned to hug me, I know that you felt the stress in mommy's body. You patted my shoulder and I knew everything was going to be OK. I know you are not fretting or worrying, I know you are trusting and walking the path God has laid before you without any hesitation. Your pat reminded me how faithful your love is and how I need to be better at that. Your pat reminded me that I need to be stronger for you.
You started to sing to me. You have a very pretty voice and all kinds of things to say. You were singing the Psalms I believe! You were rejoicing and getting me to sing along with you. You have a way to make even the saddest people realize the joy they have in this world. You have a gift that whispers right to my heart, to look at the world through your eyes, non judgemental, just with a pure heart.
You reached your cute small hand up to my head and started to twirl my hair. You were starting to get sleepy, but you wanted to make sure mommy was OK. You were playing with my hair, eyes fading in and out, and you were talking; telling me how much you loved me. You would nod and smile and then you would open one eye to make sure I was still looking at your precious face. You were whispering to me and telling me to keep the faith, to keep pressing on. You were reminding me of these great silent moments where you just whisper to my heart! I often over look them, but I am blessed that you keep reminding me about them.
As you nuzzled in to sleep, you were singing and talking to me. You were telling me of your hopes and dreams. You were telling me of what you endured and how much better you are because of everything you went through. You were thankful that you have a great story to tell others. You were whispering to me about what you would accomplish in life. How you would keep surprising everyone and keeping everyone on their toes. You whispered into my ear well beyond when you were fast asleep.
When you woke, you had a smile on your face. You were still whispering to me your dreams. I pray for you precious baby, God has His hand on you and you have already done great things. I am so excited to see what else He has in store for you.
I realized at that point about how blessed I truly am. There is a love, a pure joy there that is so much different from my other children. There is a purity that cannot be stained. There is a sense of complete love, the kind of love that can only come from our Father. There is an innocence that is untouched and won't be lost. She has something about her that I cannot describe, but it whispered so deeply to my hear that I am forever changed.
In quite moments of the mornings I think we learn so many important things. For me, it was what she really means to me. How much she really has changed my life, how blessed I am. I needed that in more ways than one. I have struggled with our path the good Lord has set before us. We have had many trials and tribulations lately. And through it all, she is constantly smiling, growing, learning, developing, and affecting every one she meets.
My words do no justice of what she means to me, the impact she has on my life. But as I could have listed off a million and one reasons to complain and mumble this morning, she whispered to me life's greatest blessings! (what an impact it made on my day...it still was a very hard day; but so much better to start off with the whispers of her heart)
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