This post has been 1 year, 72 days and two hours in the making. Hands down the hardest post anything I’ve ever had to write. But it feels good. Cathartic.
Mrs. Dude already shared some thoughts on her fabulous blog. To offer a preface to this post, many similarities below. That post was a bit of a collaboration – Mrs. Dude’s words, my editing. No need to recreate the wheel.
The Mrs. has received some amazing comments and messages from her post – heartfelt, inspiring and loving. Awesome.
But the best message – impeccable timing, but completely unrelated to the post – came from our own house. Princess penned the below gem today in her daily journal…
Awesome Mack
I love our little Mack. He is so nice, kind and sweet. One day I think Mack is going to grow a long mustache and plant flowers. And do yoga.
Nailed it! Future Mack seems super rad. The Dude is going to dig that cool cat.
Yes, that awesome picture did accompany the journal entry.
So what’s all the hub bub about Dudeski?
There’s not a lot to say, and at the same time, there’s so much to say.
His first birthday was perfect. No walking, no talking. But every rug-rat develops at their own pace.
Then the stress kicked in.
We began to question things when the party was over. We heard concerns from both Grandmas:
“Does he say any words? None?”
“He’s not using his fingers at all…still raking.”
“Notice his right foot? It drags when you help him walk.”
We started to consult Google. 12 month milestones. Yeah, not hitting many…any?!
We missed our 9 month appointment. Life moves fast with three! But, thinking back Jazzy Mack hit milestones up to 6-8 months. Then the milestones started to slow down.
Still in denial, the Mrs. and I countered with:
“He’s a quiet kid.”
“He has his sister and brother to do everything he needs.”
“Some kids just develop slower.”
Since both Grandmas also happen to be longtime nurses, we decided to listen to their concerns. We made an apt with our pediatrician to get her input. Concerns confirmed. This appointment has now led to many more – hearing test, thyroid test, a developmental specialist…
The first step was a pediatric developmental specialist. I was traveling for work. Yeah, not the best time to be apart, but the appointment came quick. And we had confidence in our handsome boy.
The development specialist is great (so I hear). She spent 2 hours conducting a very thorough exam – playing with Jasper and asking a lot of questions. As the appointment closed, she said the words that are forever locked in my noggin,
“I think Jasper has cerebral palsy.”
I wasn’t there to hear the words come out, but I sure did feel them on the other end of a phone.
The Mrs. called me on the way out to tell me the news. We talk (I cursed…a lot), some tears are shed, and we just sit on the phone in silence. Hearts breaking. And we can’t even hug.
What just happened!?!?
As the days march on, we continue with more appointments – an MRI and a neurology consult.
The neurologist shows us Jasper’s MRI for the first time. It’s abnormal.
“There is white matter on the grey matter. I see lesions on the right and left side and additional spots in the back. Was Jasper premature?”
Jasper Mack was born at home, 42 weeks pregnant. No trauma, typical everything. Big & beautiful. 9.2 lbs of total babe.
“This is deeper then what I would expect with a typical CP child.”
She mentions this could have been caused from a stroke in utero. It could be metabolic or maybe a genetic disorder.
Heads spinning.
She gives us an order for physical therapy, occupational therapy, speech pathology, and a leg brace for the right leg that drags.
“I’m not convinced this is cerebral palsy, I’m not ruling it out though. I want therapy, more testing, and then we’ll have the geneticist see him.”
We leave her office, more confused than when we entered.
After weeks of research, we had almost become used to the idea that Jas has a mild form of CP…even grateful that’s all it was.
We headed directly to the hospital for x-rays of his hips and legs, blood work and urine cultures. Genetic blood tests came a couple weeks later – but results are two months out.
Now we wait.
We’re getting good at patience.
In the mean time, we’re working hard. More importantly, Mack is working hard!
We have therapy sessions four times a week, and the little man is getting used to the new leg brace.
In four short weeks we’ve gone from no unsupported steps and no words, to a lot of new sounds (maybe even words!), some sign language, and walking…as many as 25 steps…on his own!
I LOOOOOVE this guy! With every bit of my heart.
Jasper is almost 17 months old, and as much as I want to hear him say a word – a real word – walk on his own, or use his two cute little fingers to pick up food, I really just want him to keep smiling.
If you’ve met Jas, then you know he can light up a room with his smile. He is the happiest person I know, and that happiness is contagious to anyone in the same room.
With so many unanswered questions and endless unknowns, we are doing our best to live in the present, work with Jasper as much as possible, and remember how lucky we are.
Keep smiling Jasper Mack. We love you to the moon and back.
This is our new normal. Awesome Mack.
