Friday, April 3, 2009
I think anyone who has spoken to me at all in the past 6 1/2 years knows the stories about my daughter and our adventures with 18q-. For those who don't, I'm going to give a brief overview. Those who do feel free to skip a paragraph or two.
When she was 18 months old, our daughter Kaitlyn was diagnosed with a rare chromosomal abnormality called 18 Q Deletion. This means that while most people have two complete copies of the 18th chromosome, Kaitlyn has one complete 18th chromosome and one that's missing a piece. She is missing several genes on that piece; some that have been identified and some that haven't.
Since our chromosomes are in every cell in our body, this causes problems with every cell in her body. Some genes are more important than others, so some of her problems are more impactful, such as her delayed myelination, growth hormone deficiency, hearing loss, learning delays, and social delays. Dealing with these challenges (and many others) has been difficult and has caused much sadness and heartache.
Most parents take it for granted that their children will learn to roll, sit, crawl, cruise, walk, run - these things just happen in the normal course of growing up. Of course there are no guarantees, and each child reaches milestones when he or she is ready. But for the majority of children, milestones are met within a normal time frame, in a typical manner, with minimal effort on the part of the parent and child.
We are not allowed the privilege of taking things for granted. Our daughter works much harder than most children in her attempt to reach each milestone. I say this with pride - yes, unrighteous pride - in my heart for her bravery, strength, and determination. While she took her first independent tottering steps at the age of 14 months, it wasn't until over a year later that she was walking with any kind of confidence. While it was difficult for her (and for me) to get on a special education van at the age of three and ride an hour across town to get to school, she did it every single day with a smile on her face and an eagerness to explore what the new day would bring. While she doesn't like going to the doctor 4 times a month and having at least one surgery per year (here's to 2009 - hopefully her first surgery-free year since 2004!), she does it anyway with a trust and acceptance that tears at my heart. And while life is definitely more difficult for her than it would be if she were not encumbered by the physical challenges she faces, she never, ever, ever gives up.
So along with the sadness and heartache, and yes, I'll admit it - the grief, we also get to experience something most parents never do. We get to feel the unsurpassable joy and happiness that comes from never taking anything for granted. We get to understand what a miracle it is that putting one foot in front of the other allows you to reach your destination and achieve your goals without needing help from anyone else. We get to see the smile - that beautiful, brilliant smile - that means she knows she has worked hard and that she is proud of what she has accomplished. We get to listen to this precious girl read to us every day. This child, who we were told would most likely be averbal, reads and loves books and begs for more.
In short, we get to experience things that parents of typical children not only don't get to experience, but in fact can't even understand.
I say all this in preparation for blogging on Kaitlyn's baptism. It was a day we did not know would come. Something we couldn't take for granted. Something that was most likely completely unnecessary. And something more beautiful and joyful than we ever dreamed possible.
Here's to our amazing daughter and our wonderful life. I love you, Kaitybug.