Our New Normal

If you’ve sent an email that hasn’t been responded to, left a message that wasn’t returned or received suggestions from me for another photographer in the recent months, thanks for your patience and understanding. For now, I’m only taking previously booked sessions, the family mini’s I have planned with Carolina Keiki, and few newborns in-between.

There’s not a lot to say, and at the same time, there’s so much to say.

I’ve tried to write this post time again. I keep hitting delete and moving about my day.

Not ready to share the news? Still trying to wrap my head around it? Maybe the words don’t come so easy.

Whatever the reason, it’s time.

His first birthday was perfect. No walking, no talking, but being a mom of three, I know every child is different.

Then the stress started.

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, Adam & I chime in 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. Adam was traveling for work. Not the best time to be apart, but the appointment came quick. And we had confidence in our handsome boy. Instead of Adam, my sister came to the appointment – I’ve been known not to remember a dang thing the doctor says by the end, so she was there with a note pad…thanks Shi Shi!

The development specialist is great. She spent 2 hours with us conducting a very thorough exam – playing with Jasper and asking a lot of questions. As the appointment closed, she said the words that still echo in my head,

“I think Jasper has cerebral palsy.”

I held it together pretty good, but Shi Shi knows me well. She let me just sit, and she started asking all the necessary questions. Doc said she wanted an MRI of the brain before she’d “diagnose” him.

“We’ll call you.”

What just happened!?!?

I call Adam and tell him the news. We talk (he swears…a lot), some tears are shed, and we just sit on the phone in silence. Hearts breaking, and we can’t even hug.

Luckily, family is strong. Shi Shi came home with me, and my mom was already waiting in the driveway. One of my besties from across the street even comes by to just be there. A night of junk food and girl talk. Sometimes that’s all you need, great people to just be there.

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 he could have 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 we were before.

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.

Now we wait. We are getting good at being patient.

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 (long?) 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 Japer 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.

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