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Choose to Be Thankful

I sit here writing this from my 20-year-old son, Nicholas’s, hospital room. It’s 1am on day 14, and I am feeling completely overwhelmed, exhausted and drained. Nicholas went through an extensive spine surgery just before Thanksgiving to insert 14 screws and two rods into his back to help stop the increased neuromuscular scoliosis.

The Schilling family (that’s us) has VIP status in the hospitals in the Dallas-Fort Worth. We’re a family of five. My wife and I have two boys, both of whom have multiple cognitive disabilities as well as significant medical disorders and conditions. Our “typical” daughter, the middle child, is spunky, stubborn and very loving. Needless to say, the boys have made us regulars on the medical circuit. So emergency room staff know our kids’ names. And my daughter favors some hospitals over others based on child-life activities and the on-site play room.

Tonight, I sit with Nicholas, a wonderful young man, who has autism, intellectual disabilities, a severe seizure disorder, cerebral palsy and he’s nonverbal. Three years ago, he fell ill a lot. He was diagnosed with a global muscular deterioration. Basically, all muscles, including organs, began to shut down. It seems to have started from the top down. First came dysphasia, then severe reflux with chronic aspiration pneumonia, then heart issues with ejection fraction followed by neuromuscular scoliosis, gastroparesis and now his small intestine may be shutting down.

But this kid is a fighter. He has fought for his life and won all the battles thus far. Surgeries, injuries and conditions that would make a grown man cry and beg for mercy — would make me cry and beg for mercy — are nothing to him. He gets through anything with a fully-charged iPad or iPod and Taylor Swift songs (he’s such a fan). And I find strength in his determination to fight and win!
I write to support and help myself — and hopefully you too. When it comes to raising a child or children with special needs, there are so many ways that you can choose to look at things. I choose to be thankful. Thankful for my beautiful and dedicated wife, thankful for my three wonderful children and the time I do get with each of them.

I’m not going to lie. It’s hard to cope with blow after blow sometimes, and I do allow myself time to grieve but only a few moments because I then remind myself that my time with a sick child might be gone tomorrow, and I’d rather be thankful for my time rather than regret the way I spent it.