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Celebrating a Big Win in Cerebral Palsy Awareness Month

Jamie Sumner
Special needs mom, author and blogger
03/12/20  11:47 AM PST
cerebral palsy

March is Cerebral Palsy Awareness Month, and We’re Celebrating a Big Win

When your child has special needs, developmental milestones are a lot like a game of chess. Some you skip. Some you lose. Some trap you in corners until you think you’ll never get around them. And then you do. Or you don’t and you move another piece that seems to be a stronger player at the time.

It sounds silly and too light-hearted an analogy for something as serious as the ability to sit up or crawl or walk or string three words together. But this approach to things was necessary for both me and my son, Charlie, as we navigated pediatrician’s check-ups and therapists checklists and Early Intervention requirements. If we saw it as a game, we could take it a little less personally and more like a thing we could strategize and quite possibly succeed in with more practice.

Charlie’s diagnoses are a myriad of mismatched patterns. He has Beckwith-Wiedemann syndrome (BWS), cerebral palsy, developmental global delays, limited speech and mobility. This is the point at which I generally say, “etcetera” and move on. It’s a lot. But the cool thing about Charlie is that with these, he has so many little goals that we get to cheer for and also cross off. That’s the flipside – the amazing part about parenting him – we earn more victories than most because we play more rounds.

cerebral palsy

Among some of Charlie’s checkmate wins, I have gotten to remove his tracheotomy tube for the very last time when he was two. I still remember the wet glopping sound it made and his happy cough when all was done. At age three, he said “mama” for the first time and my world turned technicolor at the word. I still light up inside each time he says it. At four, he started horseback riding therapy and can now sit up unassisted and tell his horse to “giddyup” and “whoa” with speech buttons on the saddle. At four he also walked for the first time, in a pool, with weights on his legs. He marveled at how tall he was when he stood in the pool and made his way across the water in aquatic therapy.

And now, this March, Charlie turns eight. This doesn’t seem like much of a milestone, I know. It’s not that first big birthday bash at age one or the double-digit extravaganza at ten or sweet sixteen or adult twenty-one. But if you listen closely, you might just be able to hear us singing happy birthday from wherever you are, because we will be yelling it with all our breath. Because for Charlie, eight is the age his Beckwith-Wiedemann syndrome becomes benign. BWS is an overgrowth syndrome, a weird anomaly of chromosomal arrangements that prevents the pituitary gland from regulating itself. It led to the enlarged tongue that led to the trach and g-tube. It also led to abdominal ultrasounds and blood draws every three months for the last seven years because of its link to certain fast-growing cancers. But, at age eight, the pituitary remembers itself and begins to do its job. Weird, right? And it’s only appropriate that it happens during Cerebral Palsy Awareness Month, the month in which we celebrate all the Charlie has overcome and will continue to overcome.

In March, we get to stop the constant monitoring. We get to breathe a sigh of relief that Charlie is safer and will only continue to grow more safe in his body. Eight is a BIG DEAL. Eight is the checkmate of checkmates for us in this game of life and this is why I see milestones as triumphs no matter when or how he achieves them. Even if all he has to do is age a day older, that is a win worth cheering for.

child with special needs

Jamie Sumner is a special needs mom and author.

Discover her new book, Roll with It.

Follow her on Facebook.

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