Peepers

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Honestly, I can not wait to show Marshall how the grass will tickle his toes, the sun can warm his face, the way frogs near the grotto are almost tame, and the way a line pulls when a boy hooks his first fish… 

But I stay here in the moment. 

I don’t know what the future holds for Marshall or any of us.  So I celebrate the small things. Like when during tummy time today, for the first time ever Marshall pushed off with a forearm.   And how, as I listen to peepers and stare at the moon, he is getting a much needed snuggle with his dad.  And how we had a great shopping adventure with Auntie Donna.  And how I get to introduce him to one of our most very favorite places on earth this week.

And how the kid belly laughs. 
And smiles. 
And how he just is.

Sooo thankful ♥

I did a bad thing.

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Well, on the list of bad things, this is a minor offense.

I entirely hung up on the lady at [an organization I can’t mention because they’re way bigger than me…wait for the book].

This morning I called to request Marshall get evaluated as per our Boston discharge instructions. And per his pediatrician’s prescription for physical therapy. And per my raging instincts to give this little miracle the best life I can with every opportunity he needs to succeed. Though I do have a confession: I was supposed to call to arrange at least a consult with Early Intervention at two months. I realized today that I hadn’t remembered but nor had I forgotten. I’d lost the contact information for the nurse who called us during our first week back home and it slipped.

Oopsies happen.

Sadly, the woman who answered my call today gave me 15 minutes of circulatory arguments and justifications for why their organization can’t help. Ranging from “oh no it takes forty five days for him to be evaluated” to “if he’s having his second surgery, he won’t be able to do physical therapy because we arrange for six month periods.”

I tried to just convey information. And plead his case.

No. Luck. The response I got was a broken record on repeat.

Whoa. Brakes.
My voice was calm but my heart was screaming “HE HAS A ONE IN A MILLION HEART AND SURVIVED OPEN HEART SURGERY WHEN HE WAS SIX DAYS OLD. Doesn’t that warrant at the bare minimum an argument free evaluation???????”

Again, the response I got was a broken record on repeat.

That’s when I hung up. I don’t have the time to waste. Neither does our little miracle.

Which brings me to this: why do organizations like [the one I can’t mention] exist? Isn’t one of the reasons to help people access the services they need?

Needless, after I hung up, I gave Marshall’s pediatrician a call. And explained this latest plight. And ever so graciously, her nurse is looking into the best way to proceed to get Marshall the help he needs.

Thankfully…

“He’s thriving. You are doing a great job.”

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When Harvard’s best says this, a woman like me has no choice but to listen. And share the news: Nurse Practitioner K ended our call last night with those parting words.

Plus, look at Marshall’s face 🙂

Sooooo the good news is there is no bad news to report.  

After our hometown cardiologist appt yesterday, I emailed Dr Friedman to get a general idea when we have to go in for Round 2.   It’s still up to Marshall but Dr. Friedman is pretty sure it will be in June or July.

Later last night I pressed further with K while we had our bi-weekly catch up call. She said the shunt won’t grow with Marshall so his oxygen saturation will eventually decline.  And then we will know it is time to go…

She also said some babies make it all the way to one year old before Round 2 (and others don’t make it to three months without Round 2.) 

Though delaying the inevitable sounds riskier than risky, I feel a small reassurance in thinking maybe Marshall could maybe rock his “miracleness” to stall Round 2 a while longer. 

We all would give anything for more time…especially home with him where all of my babies are together. 

And quite frankly, just the thought of him having to go through all of that again conjures all sorts of thoughts I don’t want to think …

So I don’t.  

I look at this marvelous miracle and give my thanks for being able to be a part of his and his brothers’ journeys through this crazy life ♥