Perfectly Imperfect

Dying without death....sounds weird, huh? That's what happens when your child, the person you love more than life itself, is diagnosed with something no one has ever heard of. That's the feeling that you endure for months as you go from doctor to doctor and hear over and over what your child is incapable of EVER doing. Perfectly imperfect, doesn't sound like they go together, but I'm here to tell you they do. It perfectly describes us as God sees us and how I want others to see my daughter.

The day Family Adoption Services placed Tyley Sue in my arms I knew why I wanted and desired her for so long. She was perfect in every way. She was sleeping so soundly as Tyler and I gazed at her beautiful skin, dark hair, and tiny fingers and toes. As the ladies in the agency took pictures and I look back on them, you can just see the love oozing out of us. We were elated and it felt amazing to finally hold the precious cargo that we had prayed over for years. I labored for my baby girl for years. It's true the saying about "growing in my heart, not under". It's painful, it's a long journey, but it is oh-so worth it. Life went on after we arrived home, friends and family poured blessings on us with gifts, food, and prayer. We moved, built a new house, and started in on the doctor's appointments that still haven't ended. We knew early on-around 3 months, that Tyley wasn't progressing as she should, but we just kept on praying and listening to our doctor who told us it was okay to be "a little" behind. As the months passed on, we realized Tyley was falling more and more behind. When she turned 2 we found out that her head circumference hadn't changed since her 18 month doctor appointment. That's when our doctor and we realized that something was not right. The following months held multiple visits with specialists and months of waiting for test results.

We were prepared for Angelman's syndrome; that's what our geneticist told us he thought she had based on her presentation.  I was devastated at the thought of it as the statistics read that it only occurs to about 1 in 20,000. I kept thinking, "1 in 20,000....I'm never going to know anyone else who has this, it's going to be so hard." I will be honest here and tell you, I couldn't even pray during this time. I didn't know what to ask for, what to say, how to be thankful, how to even pretend that I knew what I even wanted, and I sure wasn't able to pray for His will yet. It was a painful 2 months as we waited on her results. In January 2014 our doctor called and said that they had the results from Tyley's test and that she did have an abnormal result. He went on to explain that she had a deletion of 11p14.1. I immediately asked what that was to which he responded "we don't have a name for it because it's so rare. You can try and Google it, but you won't find anything." Who the heck can't find what they need on Google?? You can find everything from long lost family members, to recipes, to homework questions, to answers for all your routine medical questions on Google. I
had to look for myself and he was right. After hours of typing it in every way possible, I found one article on a pub-med website that my sister in law had access to for me and sent me. As I read the one article based on a doctors research I realized I was alone. More alone than I ever would have been with Angelman's syndrome. Dr. Lose was right when he said, there isn't anyone else with this. This article confirmed 4 other cases, none of which were exactly like the deletion Tyley has. So I did what I had to do and sent the doctors who had written the article an email asking for help.

I got a response from Dr. Han at the National Institute of Health in Maryland. She went on to explain to me that Tyley is super unique and that she really is the only one that they are aware of with this exact deletion. At this point my thoughts go back to a woman, growing my child in her womb, giving this child up for adoption, and God choosing Tyler and I as her parents. Us as the parents to a child who has a "disease" that no one else has, and that no doctor has heard of. Why? What made God think we were capable? Why did he choose a young couple in Alabama to guide, parent, and love one of his most unique creations? Want to know my answer? I have no stinkin' idea!! All I know is that He KNEW I could love her like no other & that I would fight for her. He knew that I would do my best to provide, and that I would do my best to trust Him to guide us.

Dr. Han went on to tell us that Tyley is the hope for a cure. The missing gene, BDNF, is responsible for brain growth and development (Tyley's is missing, hence the small head); and they took Tyley's stem cells and are hoping to change those cells into the missing brain cells to replace them and hopefully increase the brain growth. Now, that's pretty amazing. My baby is their protype for a cure. Not many people can say that :)

 We are really just getting started, although I feel like I've run a non-stop marathon over the past year as we have went from doctor to doctor looking for answers. I would be lying if I told you that I have this figured out, that I am at 100% peace, or that I even know what to pray for now. My prayers in the beginning were to take this away. To make her "normal". My prayers now are this - if healing is your plan, use it for your glory, if she's always going to be delayed and have medical problems with her brain, heart, body, speech, etc. USE IT FOR YOUR GLORY! I would be so sad at the end of my life to look back at this time and not see God use our story to inspire and save others. I want more than anything for my baby to be healed, but I want God to use all of us and Tyley to bring others to a new level in their faith. When he created my perfectly imperfect child through another woman He envisioned Tyler and I. The plan for this little girl was to land in my arms for a reason. I don't believe for a minute that it has anything to do with her medical needs. I believe with everything in me that God has a plan for her life that is bigger than I can imagine.

Finding out your child has special needs and hearing multiple doctors say "Tyley will most likely only be able to learn basic communication, to feed herself, and possible potty train, and will only do these things with extensive therapy" is heart wrenching. I still have so many fears and doubts about the future. The idea of doctors visits and therapy visits 3 times a week for the rest of our lives seems unbelievably overwhelming. However, I just keep leaning on God and my family to get through each day. Some days are better than others. Sometimes I feel like I totally rock being a special needs mom, wife, employee, and friend. Other times, I feel like I'm not even capable of getting out of bed. Some days the thoughts of Tyley's health and need absolutely CONSUME me. Other days I'm perfectly fine. When people tell us over and over all the things Tyley can't do, I try to focus on the things she can. My baby is beautiful, her personality is amazing, she loves hard, she loves to cuddle and be sung to. She is unique and she is mine.


So, where are we now? How does all this tie into the last post about North Carolina?

After finding out more details of Tyley's deletion and the effects it's having on her brain and heart, I felt God remove the peace about moving to North Carolina. After praying about it and seeking godly counsel from some of our dearest friends, I talked to Tyler and let him know that I had a check in my spirit about it. After we both prayed about it, we felt certain that God was calling us to be still. Some may say we were just crazy to begin with, others may say we got scared and chickened out; we know that God changed the direction should head. Just like Philip on his way to Gaza-God called him to Gaza, but on the way he met the Ethiopian once he had done his job there-poof- no more Gaza! Or like Abraham, God called him to sacrifice his son. Abraham was faithful and obedient, willing to give kill his son, but God stopped him right as he was about to follow through. We see though that his heart was pure and willing to do whatever God asked. I feel like these two examples were how God spoke to me. We were willing to be obedient to God's call, even though it was hard and scary. We were starting on the journey, but God changed our destination. For now, we feel God is calling us to serve and minister where we can be home and allow our friends and family to minister to us during such a hard time in our lives. We are blessed to be home and surrounded by friends and family who love and support us & we look forward to seeing what ministry opportunity God has for us here.

During EEG last week at Le Bonheur Children's Hospital

See, perfectly imperfect :)