The Changing Tides of Special Needs Parenting & the Cycle of Grief: We’re Lucky. But Sometimes It Doesn’t Feel That Way. [Featured on the Mighty]

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The morning surf-check is one of life’s delicacies. A day of clean waves is nothing short of a gift from God.

Unfortunately, the clean lines that surfers crave do not always march to shore. When the variables – wind, swell, tides, etc. – are not aligned those clean lines become a mass of confusion, some days/hours/minutes more threatening than others.

Those messy, threatening days do not dilute the fortune of living by the sea. The stormy moments offer a richness that would be lost if every day was nothing but clean lines.

Similar to the rogue wave or sudden storm, life’s engineering does not always match the forecast.

The Mrs. and I have shared the beginning of our special needs parenting journey:

As this special needs journey continues, the richness matches the beauty of the sea – unfolding in calm breezes, clean waves, and favorable tides. And unexpected storms.

Unfortunately, as any surf forecaster will tell you, ignoring the storm does not change the foreboding path. Storms will arrive. And patterns will repeat.

There is a cycle of grief. And this cycle repeats. Despite my best intentions to change the unchangeable, I recognize this cycle because we experience the raw emotions – on repeat.

  1. Denial
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance

We work through this grief cycle individually and as a family. We manage this cycle as best we can, and I’d like to believe we are improving with each repetition.

We yearn towards the clean lines of acceptance, and we revel in the warm sun and cool breeze of our strong, loving family. The majority of our time is spent enjoying the amazing waves of love and happiness that ALL special needs parents know.

But we need to mindful of the forecast. We don’t know when the storms will blow through, and we don’t know how hard we will need to bear down to remain grounded, but be prepared.

It’s amazing what a well-timed hug or good cry can do.

We’re lucky to live by the sea, but we’re even luckier to be special a special needs family.

Our New Normal {Awesome Mack}

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.

The Reality of Parenting: An Occasional Hit to the Groin

Parenting is rad. Very rad.

However, for anyone considering a journey down the parental path, every yin has a yang.

The reality of parenting?

Sometimes, as you stretch your arm across the counter to purchase a pound of your favorite coffee beans, an awesome man cub may just reach out and knock you in the midsection.

A toddler ambush. How do they have such a keen sense of attack?!

No matter how adorable, protect yourself. Cute AND sinister.

 

Jazzy’s Numero Uno

I think I say this quite a bit, but….

Dang, life moves quick!

The Littlest Dude crossed the numero uno threshold this week.

No teeth, and not walking yet. But the Man Cub eats like a bear! 90th percentile in length needs the fuel.

It was a pretty awesome numero uno b-day party with the extended fam.

Happy birthday Littlest Dude.

Littlest Dude’s First Trim

The Littlest Dude (aka – the boy with too many names) is 9 days short of the numero uno! Crazy.

And this dude needed a haircut, something fierce.

His self-created mullet lasted longer than his older bro, who scored his first buzz cut week 15, but it needed to go.

With buzzers in hand, we knocked that toupee-looking coif down to a awfully handsome shaved melon.

Lookin’ good for that 1st b-day!

 

Introducing the Boy with Too Many Names: Jazzy Mack

The Dude returned from a four month hiatus in early May.

Why the hiatus?

3 kids. Need I say more?

An explanation from Jim Gaffigan – 4 kids…

[youtube]http://www.youtube.com/watch?v=GEbZrY0G9PI[/youtube]

We welcomed the newest little dude in late January. It was an awesome surprise from start to finish.

Jazzy Mack was born in our house! I caught him in the bathroom. We were chilling in our own bed as we met each other for the first time. It was awesome.

For the past four months we’ve been trying to regain our balance. Three kids is crazy. Include a new born, and it’s absolute chaos. But the balance is returning.

Mrs. Dude shared the little man’s birth story a few weeks ago. I won’t rewrite the awesomeness, but I will add a few thoughts from the Dude’s perspective.

  • Jazzy waited until the last minute to arrive. And Mrs. Dude was uncomfortable.
  • Mrs. Dude worked HARD to make sure we weren’t pressured into induction.
  • The Boy arrived an hour after the water broke. An hour! Amazing. No way we could make it to the hospital an hour and a half away.
  • We expected it. We were prepared. Mentally and fully supplied.
  • Jazzy showed up after pushing for a bit. And Daddy caught his son!
  • Daddy caught his son! Amazing. Amazingly, amazingly rad.

He is a super cool little man. Very chill. With some big eyes and expressive eye brows.

The perfect addition for The Dudes.

Although, we did give him two names. And we kinda dig ’em both. And we have a few nicknames that we dig too.

He has a lot of names.

Confusing for some? Perhaps. Perfect for us.

Jasper Mack

9 pounds 2 ounces

21 inch’s long

10:33 pm

Brown hair

alert & healthy

PS – Want some more Jim Gaffigan? Here’s some behind the scenes with Jimmy Gaff. His perspective on kids and life is pretty great.