I haven't quite known how to start this blog. Mainly because I wasn't so sure if I really wanted to put myself out there to people who didn't know me or - even worse - to people who DID know me. However, it's time to come clean and start talking about Lily's condition so that others can read my experiences about coping with a child's disability and - mostly - so that I can come to grips with it myself. I also hope to find a community that has had some of the same experiences that I have had with Lily. I would love to hear from people who can offer me advice and hopefully in turn, I can possibly offer my insights as well. Maybe some of you are just starting down this road and maybe others of you are farther ahead of me. All thoughts are welcome and I hope my thoughts will be welcomed in return. That way we can all stay informed while admitting to each other that being a parent (and especially one of a child with a disability) is not easy.
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| Lily doing her best Gwen Stefani impression. |
First things first. Allow me to introduce you.
Lily Faith is two and half years old, but developmentally she hasn't reached as many milestones as those of a six-month-old. She still can’t sit for very long on her own, doesn’t crawl (unless you count gently wiggling on the floor like a little worm to try to get something), doesn’t talk, and can’t hold a sippy cup. She has a severe case of hypotonia, which manifests itself mostly in infants and takes on a "rag doll" kind of appearance. Her low muscle tone is present throughout her body and also affects her gross and fine motor skills, causing her to be delayed (there's that word again). Muscle tone for many with hypotonia improves over time, but for some, it can be a life-long condition.
Martin and I can deal with Lily's condition and have the capability to provide her with the best doctors, therapists, and early childhood education programs, which we do. But the hardest part for us is that hypotonia (especially a case as extreme as hers) is more of a symptom of a disorder than an actual disorder itself, meaning it is hard to pinpoint why she has it, what has caused it, or what the underlying problem really is. The doctors are stumped. Lily has passed all the tests that usually give doctors a diagnosis, but there isn’t one disorder that has manifested itself to define Lily’s situation. At this moment, we just have to wait and see, which means we have to hold on with faith. Faith, that regardless of her outcome, she will have a full life. Maybe one day, when Lily can talk (and we have faith that she will), she will be able to explain this whole mess to us. Until then, we love and kiss on her all day long and pray for her constantly.
Having said everything that Lily can't do, what she CAN do is HUGE! What may seem like nothing to most is probably a home run for us. Like the first time she smiled. We had to wait over eight months for that one, but boy was it worth the wait! And then of course there was the day that she finally rolled over at 16 months and we were jumping for joy! Or just today, when she sat up on her own for a whole 10 minutes! H.U.G.E. I feel like screaming “Wahoo!” right out our front door! Bring in the trumpets! We need to celebrate this kind of huge! Instead, we celebrate quietly in our home, but they ARE celebrations!
Lily is our mini mascot, our best buddy, and most of all—our small samurai. She is a warrior. She teaches us daily about humility, kindness, patience and love…lots of love. I'm excited for you to get to know her through this blog.
