Ellen is at home sick from school for the first time this year; Allison is laying next to her watching TV and Lydia is on her mat fast asleep. I guess there is no better thing for me to do than to reflect on the past couple of weeks. I have been emotionally and mentally exhausted. Partially because hospital life with a toddler is much different than it was with a little baby. I guess I need to be super thankful that she endured so much while she was still really young and we did not have to be there constantly to entertain her and keep her from pulling out her lines. It was a chore and left me feeling older than what I should be feeling!
A couple weeks ago we went into the surgery clinic to get some help with wound care. Lydia's tube had been leaking for several months, causing her severe pain and I was struggling getting her belly to heal. I think we were all at our wits ends with what to do. Taking the tube out and then discovering that it needed to be reinserted would result in a HUGE surgery. So making the decision came with a lot of prayer and discernment. However, my husband and I were both at the point that she was telling us it was time, she had had enough and so did we.
Our surgery nurse was so nice. We discussed options that we could take to improve the site. And in true Lydia form, the day we go to the doctor, her site looks better than it had in a long time. But as our nurse was about to leave to gather some supplies, I asked the question of what is our plan? If we are going to surgically close it in a month, what is the hold up? Does she really have to be in this much pain for that long? She said she would ask the surgeon and see what he said. I know that our GI doctor was not on board because she did not have the weight gain that they would have liked to see, however, we felt that removing the tube would help this. And since she could not tolerate feeds through it anyways, there was really no sense in keeping it in.
When the nurse walked through the door she said that the surgeon said let's remove it and see if it will heal on its own. WHAT? I could not believe my ears. So standing next to me was Allison and we watched as the tube was removed one last time. The nurse had asked if I wanted to do it and I said no. She said that some families like to do it just as a remembrance thing. I guess at that point I had not really prepared myself for seeing my daughter, for the very first time, without a tube. Since the very first time I held her, she had some sort of tube or appliance connected to her. Allison could barely contain herself. She was so excited her sister was getting her tube removed.
I texted Eric to let him know and I don't think anyone or anything could wipe that smile off my face. I was SO excited that the tube was gone. Maybe now our daughter would be able to life a pain-free life. She could partake in the activities just as everyone else does. It was an amazing experience.
When we got home she was moving around the house with ease and a freedom we had never seen before. She was so happy, I did not think that she could be happier than she was before, but God surprised me and showed me just how happy she can be! She was doing fabulous.
The very next day she started struggling. By the afternoon she was in terrible pain. Everything she was eating or drinking was coming out the tube site. She napped and when she woke up she was in a terrible pain. She was shrieking and shaking. She could not calm herself down. We rushed down to the ER at Children's in Milwaukee. It is about an hour from our house, but my husband made sure we got there quickly and safely!
We were admitted that night and they placed an IV to run fluids. The next morning we discussed a plan. The skin around the site was so compromised they were worried about doing surgery because she would be at such a high risk for wound infection. However, we needed her to keep up her oral skills. We decided placing a PICC line would be the best thing and giving her IV nutrition so she could heal. I was super worried about her not eating for several days as she might go backwards on her oral skills. While they placed the PICC they tried to insert the feeding tube again. However, she had closed pretty far and they did not want to irritate the site. So, we would just have to limit what she could drink and change her dressing as often as possible to keep the skin looking good.
It was a long couple of days and she was on a lot of pain medicine. It was crazy. Tuesday came and my stomach was in knots. This was a simple procedure, however, because there were several unknowns, the site area was still very compromised; there were A LOT of variables going into surgery. I was super uneasy. Our surgeon is FANTASTIC. I just have a HUGE sense of peace knowing that she is in his hands. What a blessing he has been to our family.
I could not sit still for her operation. She was in there for one short hour before I saw on the board that her procedure was finished. I could finally breath again. Our surgeon came out just glowing. He had nothing but good things to say. He said the surgery was super easy and she was already extubated and sitting on the bed smiling and talking. Oh thank God for answered prayers. I was SO relieved.
They came back to get me to go to recovery shortly and I was able to hold her again. She was perfect. Oh how amazing that was. We were then taken back up to our room, no ICU. Daddy was able to see us again and he was just as excited as I was.
She had a pretty good recovery. She is still up and down on her eating because she is also fighting off a virus. But she has proven to be a fighter. Nothing will keep her down!
There was a time on this journey that I was mad at the surgeon for constantly cutting into my child, making more scars for her to contend with. When I look at her beautiful tummy I see an amazing story. I see her strength. With each scar I remember something about her and how she fought to get where she is. I see God's Hand wrapping her and holding her as He healed her and brought her to the life we know today. It is nothing short of a miracle. It is one of the most beautiful stories that can be told in this world.
Her scars not only tell a beautiful story, show her strength and her character, but they make her Lydia. God created her just the way she is and what a masterpiece she is. I am so thankful to be her mom. I am so thankful that she continually teaches me. I am so blessed by her.
So I look at her belly and just stand in awe. She is so amazing and so strong. I am so thankful for every single experience that God has allowed us to walk on this journey. I am so thankful for her scars and the stories she gets to tell. She has healed, the battle is over and we can proceed to the next part of our journey.
I have to say I was ready to sit down and write all about Lydia and who she is today. I still am going to, but I need to share something that really made me sad today. Today there are millions who are celebrating World Down Syndrome Day to create awareness and share with the world about our special blessings. It is important to create awareness and stand strong as a community. As part of the PathMakers Support group that I work with, we decided to do a project for Trisomy Awareness month. We have several kiddos who have T21 and one that has T18. The idea was to feature these kiddos in the local newspaper on March 18 and March 21. After submitting several articles, and making several phone calls, I never received a returned call or e-mail about our story. March 18 came and went and Leila was not featured nor mentioned. March 21 is here and there is no child featured in the paper who happens to have T21. There are several good stories in there, however, there are none that talk about Trisomy Awareness. Our project was not so successful. To say I am mad, is a little bit of a understatement. However, if Lydia has taught me anything it is to keep fighting. To not let that HUGE door that has been slammed in your face discourage you. She has taught me to keep smiling and ALWAYS take the high road. I decided to use social medial to gain support for our kiddos and circulate our story. There is still a lot of ground that needs to be made to create more awareness about Trisomy. I guess when you think of it, it really could not have happened on a more perfect day. My newsfeed on Facebook is lit up with posts about Down syndrome, and really all month it has been lit up with Trisomy awareness information. Thanks Lydia for teaching your mom once again. You have changed me for the better!
I can't think of anything that describes Lydia better than a picture, well I guess unless you get to meet her! So, today I am thankful for the many lessons that she teaches me and especially the one she taught me today. I hope you enjoy these pictures and her smiles. Thank you for your continued support and prayers. God knew the void that I needed filled in my heart and gave me Lydia. She loves without fears and she is just one extra amazing girl! I am so blessed!
Lydia sitting in her Bumbo helping mom cook!
My first picture with my girl, 18 hours after she was born!
Lydia after her very first surgery to place a G Tube, day 2 of life.
Lydia hanging in the hospital growing, waiting for her first major surgery.
Lydia eating, drinking from her cup.
Love how this girl sleeps!
Sitting for her very first time.
If you have not had a chance to watch the video I posted the other day, I encourage you to do so!
Also, there was a great article this morning from the Today show...wanted to post that also!
We all have fears. Sometimes they consume us, sometimes they are good for us. But I do believe that all fears hold us back from something, and I would argue, most often times the best blessings. While fears are natural, one thing I have learned is to break through them and see what is on the other side. I have had many fears on this journey of life. From my marriage to being a mom to raising a child who has significant medical needs, a child with special needs, a Christian family in a world that is cold and has very different views than the Bible, to being a stay at home mom. I have encountered many fears in my life and I know I will continue to encounter them.
I will never forget the fear when we heard that we were in the high risk category for a child who may have Down syndrome, the fear that enveloped me when we heard our sweet baby had a heart defect and they could not detect a stomach. The fear of sending your child off to surgery multiple times, the fear in my heart when a lady approached me and said I needed to abort my baby because nothing good comes from a mom who is that large. Or the fear and anger when a doctor said I could wash my hands of my child and institutionalize her (that stings just writing it). These are all real fears, these are all things that I have encountered so far. I am sure as we continue this journey, there are going to be many more things, things that may sting even more.
However, if I was just consumed with these fears, I would miss the biggest blessings that God had planned for me. I would have been too scared to open my eyes and realize the rainbow on the other side of the fear. By trusting God, allowing Him to walk me through these fears, trusting that He has already conquered these fears, I have been opened to so much more. I have grown, I have faith that can move mountains, I have a daughter who is the light of my world, my other daughters are better because of Lydia, and I have strong marriage. The lessons that we have learned are numerous and oh so priceless. And I know that I am not done yet...that is the exciting part for me!
When I think about what makes Lydia so different from my other kids I think it is because she has no fears. There is nothing that holds her back. She is ready to explore at any moment, no matter what has been given to her she is ready to tackle it and she has a smile on her face. No matter what the mood is around her she is happy and waiting to make some one's day. To live your life with a child like faith and not let fear over take you, is what she has taught me. At the end of the day there is nothing else that matters. She loves without fear and that is something that is simply amazing. There are no strings attached, she is who she is. She does not mask that or cover it up. She is simply amazing! And because of that she challenges me every day to be a better person.
I remember when I was pregnant with Lydia we spent some time in St. Louis while my husband was working there. I remember visiting a museum and crawling around with the children. I remember getting stuck and just laughing for hours. I did not care, I was having fun. All of the worries of the world were so small, I was having fun with my children. I did not let my fears of what others would think cloud my judgement. It is still a moment that my other girls talk about to this day. On that same trip, I rode up to the top of the Arch. I am extremely claustrophobic. Especially when I am pregnant and not to mention how incredibly large I was. But I did it, I showed my girls I could face my fears. My husband was standing there holding my hand and cheering for me. I remember feeling totally on top of the world. To be able to get pictures with my girls at the top of the Arch was a big thing for me. I remember what it was like to face my fears, big or small there is such a blessing in it.
I do think that we as a society have clouded Down syndrome with many things that it is not. We have a perception that is totally false. When I hear parents talk about their child with Down syndrome, there is nothing but positive things. However, I hear things from the world like that couple is safe from have a child with Down syndrome, I am glad that it's their burden and not mine, I could never do what that family does, I am glad that my children are healthy...and the list goes on. Many of those comments have been said to us too, however, I just feel bad because it is fears that have prevented these folks from the blessing of a child like Lydia. It is their fears that have prevented them from growing and seeing what God has in store for them!
I really am not sure if I am making sense, but in my mind it does. There was a HUGE fear learning about Lydia. Mostly because of her medical issues and the Down syndrome just happened to be part of her. I am so glad it happened that way. We did not focus on the fact she had Down syndrome, we focused on her getting better. And she is who she is because she is Lydia. But the fears that were in my mind were huge. However, God had great plans. In making me face my fears I have found love and joy. I have a very strong family. I have girls who have learned about sacrifice, loving, caring, not judging others for what they look like (or what line or tube they may have in place!), things they would not have learned had it not been the fact we had to face our fears. I am so excited to see where they will go in life because they have learned this so young. I have a deep appreciation for who Lydia is and what she has brought to our family just by being her.
I think about how our fears can direct our lives. I think about how these fears can make us miss out on things. I would encourage you to face your fears and discover the blessings you are missing because of your fears. Are you scared because someone looks different than you, because they act different? Are you scared because you feel that person may be a burden when in fact they were given to you to learn and grow? Are you scared because you can't control the situation? Are you scared because you are walking a path of unknowns, or one you thought you never would?
God knows our every need, even ones we don't know yet. God knows exactly what we need. When we trust Him completely, life is beautiful. It is not going to be easy and we will have very difficult times, but He will be standing next to us helping us. He will grow us into the people He has created us to be...each one of us. Lydia may look a little different, may be a little slower at picking up things, but she is no less than me or you. She was fearfully and wonderfully made. She has feelings and emotions just like you and me. She is capable of many things so don't hinder her potential because of your own fears.
I can go on and on about what she is and how she has taught our family and how blessed I am. But as I sit and think about it, I really want to encourage everyone to face their fears. Lack of knowledge about what Down syndrome is, fears of not really knowing, false stereotypes are things that need to be faced and overcome. Lydia is important, she is no less than you or me. Be prepared world, she has great things planned for her. If you are too scared to discover the blessings of someone different she is going to walk right over you...nothing is stopping her! She is who she is and that is amazing! No one will tell her differently.
We are just three short days away from National World Down Syndrome Day. I am challenging myself to write three posts that are related to creating awareness about Down syndrome. This is something that I have felt passionate about since I found out that our baby has Down syndrome. As I was praying about what to write, the question of why do I care about creating awareness about Down syndrome popped in my head. After thinking about it for awhile, I really don't have a good reason, it just is important to me.
I really don't care if any of my children are "accepted" by world standards, but I do care if they are following Jesus, if they have accepted Him as their Lord and Savior. I really don't care if the world makes "fun" of my children or calls them names as long as they know that their parents love them and will always be by their side, and they are accountable to God. May sound harsh, but when it all gets boiled down, it just does not matter, faith is really what this family is built on and is what holds us together!
I don't care if the world does not accept Lydia as she was created; her family does and that is all that matters. God created her for a very specific purpose and we love that. We accept her for who she is, just as she accepts us for who we are. Who could want any more than that? She has made us better because of who she is. She has opened our eyes to a whole different world, one that is better!
I think I care so much about creating awareness because I want the whole world to learn what I have learned from her; from walking on this journey. While I realize that not all of us are meant to learn every single lesson in life, I feel that it is important to know what Down syndrome is by a mother, a family rather than social media, a medical professional, a book, a diagnosis...from folks who are uneducated or have not interacted with someone who has Down syndrome. I think it is funny that we would not ask a question to learn more about a TV to a car salesmen, why do we hold tight to the information the media give us. It is not always accurate. We judge and make stereotypes before we even get the real facts. That is unfair, and I want to do something to change that!
I once was someone who did not know a person with Down syndrome. I once was someone who believed the stereotypes. I once was someone who was totally uneducated about Down syndrome. Often times we all are uneducated about something until it affects us. However, my eyes have been opened, my heart has been changed; God knew there was an empty spot and filled it with Lydia. Those things that I thought that I knew about Down syndrome, have been changed, they were wrong, I have been opened to an entirely new way of thinking. Any fear that I had is now replaced with love. Complete love, love like I had never known before. It is a choice, there are days that are so hard, but the love she gives is indescribable. What she has taught me, yes a 19 month old, is immeasurable.
While I can never be able to put into words our journey, what I have learned, what Lydia means to me and our family, I try very hard by sharing our journey. Until you have walked in the shoes, I understand that it is hard to really know. However, I think just by meeting Lydia you would agree she is special. She may be special because she carries 47 chromosomes, or she may be special because she has a big smile. She may be special because she will tug at your heart strings because she is so cute (Ok I am a little bias!) or she may be special because she will look you right in the eye and tell you she loves you. She wears her personality on her outside for everyone to see, and it is something that most people take notice.
I am not asking for money or research to cure her. She is incurable. She does not need to be cured from anything. She needs to be accepted. Sometimes our media clouds everything with cancer research or this research or that. However, sometimes just accepting who someone is for what they were created is the very first step. Please hear me, I am not putting these efforts down, but what I am asking for is acceptance of people who are a little different, may look a little different than the "norm", may take a little longer to get something that is second nature to you and me, and breaking through the old stereotypes that just do not describe someone like Lydia.
I think I mentioned this before, but I saw a post on Facebook from a nurse about the devastating defects of Down syndrome. Almost everything it mentioned was a physical defect and not a really devastating defect. Lydia does have some devastating defects. It was scary when she went in to get her heart fixed...that is a major surgery. There may be possible complications that she will have to deal with for the rest of her life. However, it is fixable which is great. It was heart aching learning about her Esophageal Atresia. The "fixes" were not good...all of them came with a laundry list of possibilities. Her surgery was devastating. However, she is proving every day that she has what it takes to overcome that and prove everyone wrong. But her chubby hands, her low lying ears, her creases in her hands, the space between her toes, her slanted eyes, her short nose, her larger tongue, her crooked teeth...I think they are cute, they make her who she is and they are not devastating at all. We joke because I find some of those "devastating defects" in myself, my husband, my other children, and she does not have many of them. Those are physical traits, that they may or may not have, and they are not devastating at all.
Acceptance and knowledge of others is so powerful. She has Down syndrome, but Down syndrome does not have her. She is classified by many things that Down syndrome has, but she does not fit all of them. Just as my other children have different characteristics about them, it does not define them. Why should we then classify Lydia differently because she has Down syndrome. That means nothing more than she has an extra Chromosome, she is extra sweet, she is extra special, she is extra determined.
I think you would be surprised that she is more alike with her sisters than she is different. She gets into things and she reaches her developmental milestones. She may be a little slower than some, but she gets them. She does everything with a smile and there is always pure joy in her face and in her heart. It is enough just to melt you and inspire you to be a better person.
When I think about the 3 Chromosomes, I think about how important the number three has been to me and my husband. We dated for three years before we were married, when we chose the date of our wedding we had 11/1/03 (three ones to compliment the 03), we believe that a marriage takes three, we did not have kids until we were married for three years, we have three children. OK...maybe I am going overboard, but she was meant for us. The 3 Chromosomes are special, they are wonderful.
I challenge you to share this blog or another blog about Down syndrome. I challenge you to continue learning about Down syndrome. I challenge you, if you don't already know someone with Down syndrome, get to know someone, they will change your life (be prepared). I challenge you to share with others about Down syndrome. And on Thursday March 21, 2013 wear blue and yellow proudly and tell others why. Or if you participated in a walk with us, wear your shirt and share about Down syndrome.
One of the organizations that I like on Facebook is IDSC. They have been a great support for me as we continue to walk this journey. They recently put out a video about creating awareness for Down syndrome. I think that it is awesome. Please take a couple minutes and watch this video and share as you feel led to!
Sometimes it is so hard to write specifically on Down syndrome. I just feel like I get tongue tied and can't quite communicate as I would like. I hope this makes sense. I feel passionately about creating awareness because it is my daughter. I once was uneducated and now I feel so blessed to be Lydia's mom. It is something that I can't explain, but if you know her, you probably understand too. She is who she is and I am so proud of that! Aren't we all!
Trisomy 21 is what Lydia has. It means that she has an extra 21st chromosome. It means that there is the possibility of some distinct physical differences for her. It means that she will most likely be delayed in some physical development, but at some point she will be able to achieve those milestones. It means that there may be some medical issues associated with her chromosome defect. It means that she has something extra than most people. It may mean a lot of things to group her into some different categories, stereotypes, high-risk groups. However, it does not define her, it does not describe her, it does not limit her.
I have prayed for awhile as to what I wanted to share about to help create some awareness about Trisomy awareness month. I feel like I need to change people's minds, shake them until they understand what this all really means. I want to wipe away those bad stereotypes. However, I realize that I cannot do that. I am very passionate about creating awareness and breaking down old stereotypes. I believe the best way that I can do that is to share our story, as I have done.
What a blessing God has given me, not only in Lydia, but in one amazing testimony. God will bring the people He wants to read all about Lydia. God will work in the hearts of those that He wants this testimony to touch. God is really what it is all about. And in figuring this out, my walk with Him has been much stronger, much closer.
I can say all kinds of great things about Lydia, she is my daughter. I would say that about any of my girls. They are awesome! However, I can say that there is definitely something different about Lydia. Most of it is probably because she has Trisomy 21 (AKA Down Syndrome!). But that difference isn't from the things that you have probably heard. That difference is in who she is, who she challenges me to be, who she challenges her sisters and her dad to be. It is in how she affects everyone she meets. It is this twinkle in her eye, her HUGE (cheesy) smile, her pure love and joy, her constant happiness. It is in her ability to teach others more about themselves and she does not even know she is doing that!
I can go on and on about what this journey has taught me and how much I have grown. I do believe, however, that God know exactly what we need. I do know that Lydia is not a mistake by any means. The plans that God has for her life are incredible, just like each one of us. We all come in different shapes and sizes. We try to categorize, we try to make one thing better than the other. We were never intended to be categorized. We were all made with a specific purpose and plan. We all fit together.
The best image is the body of Christ. Christ knit each one of us together fearfully and wonderfully in our mother's womb. We had a purpose and plan. We are all members of the body of believers and together we work. Apart we struggle. So Lydia has a plan just like you and I do. It does not matter what part she is, she is important. When one of our parts of our body hurts, it effects the entire body. When one part of the body is in pain, the rest of the body struggles, it feels that pain, it is harder to operate.
I guess what I am saying, is if we all embraced this, we would no longer have to categorize and we could all work together much better, just as Christ had designed. However, sin is in the way. We allow ourselves to walk down a sinful path. We all do, as we are all sinners. But we must chose the path God wants us to walk. We must try to turn away from our sin and embrace His truth.
As our family continues down this path, I will continue to tell others about Down syndrome and create awareness. I will continue to tell our story. I will continue to try to use our testimony for God's glory. I will try to create awareness as best as I can by sharing with others who Lydia is. By allowing her to be herself and show the world that she is not defined by an extra Chromosome, but she is made extra special because of it.
I think it is hard for me to write and clearly explain what this means to me. This is my child, I have prayed for her, I love her, and because of her I am such a better person. It is hard to put into words who she is so others will understand. And just as we are all judged in some way, she will be no different. I do not feel like I need to defend her life, but I do feel like breaking down some old stereotypes will help.
One thing that I read this weekend really got me fired up and thinking. It was shared on a nurses Facebook group page. It was talking about the devastating defects of Down syndrome. The "defects" that they were mainly referring to were just physical differences. This makes me upset. We all have some kind of physical abnormality. God made all of us different, not one of us are the same. However, why are her abnormalities devastating? What makes having chubby hands, creases in our palms, slanted eyes so devastating? I think educating is a really big issue.
I do, however, understand first hand that there are devastating defects that come along with Down syndrome. But many folks who have Down syndrome do not have these either. Lydia was "extra" special in that she did get some of these devastating defects. However, with the significant gains in the medical field, she is able to live a healthy and "normal" life. Normal by definition is her normal life, not yours! Just like it is my normal life and not my husbands! But I would say now that she has been able to overcome the surgeries and things, she can look back and she what a strong person she is, what she has accomplished.
It is my prayer that more people educate themselves on Down syndrome. That we would all embrace differences and that we are not quick to classify into a stereotype. Lydia is more alike to me and you than she is different, the world just chooses to focus on her differences.
Happy Trisomy Awareness Month. Thursday March 21, 2013 is National Down Syndrome Day. I pray that we all reach out and educate, share your story!