That could be the scenario for many things in life. For me this week, it was the call that said, "We have the results back from Ava's testing." Next she said, "Do you have a few minutes that we could talk?" There was part of me in that moment that wanted to scream, "NO! I don't have a few minutes for you to tell me what is wrong! I don't know if I will ever have a few minutes for this conversation!" But I knew delaying the inevitable was not going to help my daughter no matter what the news was.
Bottom line, we now have an official diagnosis. Ava has Duplication 16P13.3 Syndrome. Fancy name, huh?! Simply, it means that she has duplication on her 16th chromosome. That duplication can cause many symptoms, and it is what causes the delays and difficulties we see in Ava. It is a life long condition.
So now what? I mean, what do you do with that? I went from relief at having an answer we have searched for the last 6 years to sadness that I really had an answer. It kind of takes all denial away that you might have been hanging onto that all is well....just a minor delay here and there. But it did not take much research before I was overcome with thankfulness! As I read all that can be caused by this particular syndrome, I thanked God that Ava has very mild symptoms! There are kidney and heart issues associated with it that we have not had to deal with. And ultimately, I just had to thank God that He knit my precious baby girl in my womb! I can honestly say the one emotion I have not had since learning about the diagnosis is fear. My God is a great big God! He knows every hair on my sweet girl's head. He made her, fearfully and wonderfully made her! As I said that scripture over and over in my head this week, I have to admit there was some confusion in my soul. Chromosomes are the knitting! They are what gives the instructions for the creating....so if the chromosome is not "normal" then did God cause that? I don't believe He causes illness. And I am not going to pretend I have the theological understanding to really even think about questions like that! But what quickly settled into my spirit was "Does it matter?" Regardless of what the answer is, does it change that God is a good God? Nope! Not one bit! So there will be no why questions from me to God. He is good all the time....even when I hear that my daughter has an abnormality in how she is knit together! It's funny. I remember when a friend found out her unborn baby had Spina Bifida. I remember asking God how to reconcile Psalm 139 with babies who are knit together in a way that we don't think of as "wonderful". I had to chuckle as I thought back on how I wrestled with that for my friend knowing now that God had me wrestling with that then because He knew what I would face now. Oh how I love Him! The conclusion that I came to and feel God inspired in me for my friend's baby is that we hear fearfully and wonderfully made as perfectly and according to the world's standard of abilities. But what He knits together is what is fearfully and wonderfully made for His kingdom! I don't believe God causes illness, and I will believe and ask God to heal Ava so that she functions on a level that the world sees as "normal", but I rest in the fact that God loves her more than I do, and He knit her together with a purpose for His Kingdom, and she has all she needs to fulfill that purpose!
As I look at Ava, I can't help but see that God did in fact knit her together amazingly! She has a joy that I don't even begin to grasp. She has a faith and a connection to the Holy Spirit that I am envious of at times. Her childlike innocence and belief in the things of God's Word makes her an amazing warrior for the kingdom! And she does not meet a stranger! She is loved everywhere she goes. This syndrome was not even discovered until 2010 (ironically, that's when we started doing our tests to see what was happening with our sweet girl!), and in 2013 only 26 cases had been documented. They now think that 1 in 150,000 births have this duplication. So what that tells me is that we now have proof that she is the rare treasure we always knew she was!
So what now? Well, Cook Children's Hospital got a few mad momma calls that day because for 2 years we have been trying to get her into a neurologist that will listen to us. But their policy says we cannot switch doctors. We have an appointment with a new neurologist in September. ;) We have to have some hard conversations about educational goals and long term goals in order to make sure financially and legally she will be provided for and cared for. Now that we have a "life long" condition diagnosis, we can go more boldly into realms that we really couldn't before to try to get her all she needs to be successful and live the best life possible. All this is a new arena for us, so we are definitely on a learning curve! But again, we trust God to bring wisdom and provide fully!
Over the last few days as I have processed all the new information, I have just stood in awe at my sweet girl! I have learned to appreciate her laugh more. I have learned to soak in her smile and the sparkle in her eyes. Its as if the diagnosis has given me permission to let her be her. I don't have to "push" her to be what every other 10 year old girl is. I have permission to just enjoy who she is and where she is and love her for right now! And that is the best gift I could have been given!
For all who have walked this path with us, loved our sweet girl, worked with her at school and at church, prayed with us for answers, we thank you! And we appreciate you! Please don't stop praying! Now that we have a diagnosis we will be searching for ways to make sure we are doing all we can to help Ava become all she can be! We are excited about her future that we know is full of hope because of our amazing and good God! Thanks for walking with us!
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