The NICU Nurse Who Showed Us How To Fight

May 6 – 12, 2018 was National Nurses Week. As I read through posts on Facebook and articles online, I recalled our time in the NICU where the nurses played such a major part in Solly’s recovery. There was one NICU nurse in particular who I credit with getting Solly home quickly and setting him up for success – namely, teaching us how to fight for him. This is our story with Judy. 

“He’s going to be there for weeks or even months, not days,” Mike told me as I shook my head in disbelief, tears streaming down my face. It was two days after Solly was born via emergency c-section and he’d been admitted to the NICU due to seizures. We’d just received the result from his MRI: massive, multiple bi-lateral strokes that occurred some time around birth. The prognosis from the fellow on duty that evening was horrible. She didn’t sugarcoat it at all: our son would never walk or talk, he’d likely be unable to hear or see, and he’d probably never live an independent life.

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A Little Stroll

When we got home from NAPA Center three weeks ago, I tried to make more of an effort to have Sol spend some time in his gait trainer each day.

When I say “make more of an effort”, that generally means that I’m successful maybe every few days because, let’s face it, if I were to do every activity that every single one of Solly’s therapists want me to do at home with him, we’d have enough activities to fill up 54 hours in one day. But, we’ll save the topic of “Mom is medical coordinator, researcher, therapist, advocate, all-while-trying-to-be-Mom” for another post.

While chatting with Jennifer, Solly’s PT at Full Circle Therapy, during last week’s hippotherapy appointment, I told her that we were struggling to find something at home to motivate him to take steps in his gait trainer. She suggested that we allow Solly to have alone time while in his gait trainer so he can work on figuring it out on his own. So, we took her advice and starting last week, for about 30 minutes before dinner, Solly would spend some time simply hanging out in one of his gait trainers. For a couple of nights, he’d shuffle forward a little bit and get stuck, so I’d adjust him and let him hang out so more.

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Another Walk in the Park

We struggle with motivation. I always get a little envious when I see other babies just sit and play with toys or get up and walk toward their favorite stuffed animal. Bea would do just about anything for an episode of Sesame Street or for her Elmo stuffed animals. Nothing like this ever works for Solly. He’d rather just sit and chew on whatever is in his path than press buttons on a toy or play with a toy car.

This has made therapies – both in a clinical setting and at home – rather difficult. It’s impossible to work on Solly’s strength or functional movement if all he wants to do is hunker down and chomp on a puzzle piece. If a 3 year old doesn’t want to do the work and isn’t interested in anything that will trick him into doing the work, how can we make any gains?

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Whatcha Say

“May I ask what he has?”

I blinked my eyes several times. Did I just hear the Starbucks barista right? Did she just ask me what condition my son has?

“Excuse me?” I said, with a smile.

“What does he have?”

“Oh, Solly? What does he have? You mean …….. He has CP,” I said quietly, nervously. I was hoping that’s what she meant by her question, not wanting to make her feel awkward if it wasn’t.

“Oh, CP! My oldest has Asperger’s. I’m a special needs Mom, too,” she replied. “Bye, bye, Solly. Come back, soon!”

This conversation was such a breath of fresh air that I literally skipped back to the car with my chai tea latte in one hand and Solly in my other arm.

When you have a special needs child, every outing has its share of stares. It used to bother the heck out of me and keep me inside the house. Now, I’m so used to it that I don’t notice, I don’t have time to dwell on it and, quite frankly, I don’t care if a handful of strangers stare at my obviously delayed and different child. However, one of the hardest parts of being a special needs Mom is feeling different and outcast from the general public, and the stares certainly don’t help. The problem, I’ve realized, is that unless you are a special needs family, you simply don’t know what to do or say when you see a child or person who’s a little bit different. And, instead of saying something to that family or child, you might wonder “what’s wrong with that child” and worry about what to say and decide it’s best to say nothing at all.

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