Today my mind is on my first baby, Justin…. The Skow. His unique nickname evolved over the course of those first few months as we adjusted to life as parents. One of the few things that life does NOT prepare you for is baby poop. It is disgusting, totally random, and the fact that you MUST deal with it is inescapable. Like most parents we made little jokes and tried to laugh our way through each precious ‘deposit’. One of our coping mechanisms was to make up names for Justin. It started out as ‘Pooter’ which became ‘Potty’ (as in “Did you go potty”?), and then, one fateful day, while doing his best Russian accent, Greg called him, ‘Potskow’. It stuck, and over the years was shortened to ‘Skow’, sometimes he is ‘The Skow’. Since the first day with Justin we’ve tried our best to enjoy every moment with him. His first laugh was one of the most beautiful sounds I had ever heard, and it still is!
When we first started to think that Justin wasn’t developing as he should, we pushed that thought to the side. “Boys are slower to reach milestones than girls”, we were told. The fact that my sister had her baby 3 days before I had Justin made the lack of development painfully obvious. After many doctor visits, a CT scan preformed by a neurologist, and finally being sent to a Developmental Pediatrician, at 15 months old our sweet, beautiful baby boy was diagnosed with Cerebral Palsy. Looking back on that day, I remember having an overwhelming sense of relief. It was as if the world had been lifted from my shoulders and I could breathe again. I recall the ride home, Greg and I hardly spoke. We weren’t angry with each other, there was no finger pointing or blaming. We didn’t try to over analyze the news we had just received. We just traveled the 45 minutes home for the most part in a calm, relaxed silence. The only spoken words were of us expressing our mutual relief at finally having a name for what set our baby apart from other “normal” babies. So many things have happened since that car ride home. Therapists, specialists, procedures, tests, scans, surgeries, feeding tubes, terrifying trips to the ER, illnesses, ventilators, seizures, wheelchairs, adaptive toys, bath chairs, and diapers changes for 23 years (that’s approximately 33,602 diapers for those playing at home). But, there have also been holidays, family get-togethers, vacations, church, school, making friends that we would have otherwise never met, taking pleasure in the simplest things that some might take for granted, huge hugs and sweet kisses, ticklish giggles, a secret language that we call “glarg”, holding my son who is almost 6 feet tall on my lap, and of course cool nicknames. 😎
If someone had told me when we first received Justin’s diagnosis that one day I would thank God for it, I would have laughed in their face. No one in their right mind would WANT their child to face the daily struggle of a handicap, that would just be cruel and heartless. But the fact of the matter is, he WAS born with Cerebral Palsy, he DOES have a disability, so now what? I do the only thing I can. I “play the hand I’m dealt”, “put on my big girl panties”, “suck it up, buttercup” and get on with our lives! And somewhere in all of that, I heard the Lord, speaking to my heart (now, don’t go thinking that I’m schizophrenic) and He’s telling me what a blessing this child will be if I would simply turn my life over to Him. That experience was truly a turning point in my life. But that’s a story for another day.