Waverly was born with Miller-Dieker Syndrome. Her condition affects less than 1 out of 100,000 people. That means that there is a deletion of genetic material on her 17th chromosome. That caused her brain to be smooth, a condition known as Lissencephaly.
As a result, she is severely delayed in all areas (physical and cognitive). What does this look like on a daily basis for us? She is fed through a tube that goes directly into her intestines and stomach. Her lungs are very weak, and we do multiple breathing treatments with her each day to try to keep them clear. She has multiple seizures a day. She is on an oxygen monitor at all times. She gets oxygen as needed, and is on a bipap (breathing machine) at night to help her breathe and keep her lungs open. We regularly suction mucous from her mouth and nose. We cath her 4 times a day to help her empty her bladder. She is on over 15 medications daily. She is non mobile and non verbal. She cannot hold her head up. She depends on us for every thing.
But want to know what it also means? It means that we now speak without using words. It means we don't take one day for granted. It means we love deeper and more fiercely than we ever knew possible. It means heaven is so much more real to us, as we long for the day to be with her in a healthy and happy state. It means that we have seen how real and strong our Lord is, because who can endure such things without His strength? It means we have known deeper sorry, and deeper joy, than we ever imagined. It means we have experienced how sacred and important life is, all life. It means we have known a love so pure and real that it points us back to our Father. It means that God gets the glory, because of His goodness. In short, it means everything.
Thanks for taking the time to read what Rare means to us today, and for those who love our family so well.
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