If I had a quarter for every time someone said to me  “He doesn’t look sick,” I would not have to worry about the over $2500 of Marshall’s medical bills that have gone to collections. Nor the over $15000 plus I have paid in deductibles, housing, food, gas, parking, supplies, medicine, etc…

Yes I could have stopped the last $2500 from going to collections but that would have taken away from what little savings I have left to carry our little miracle, my big wild boys, and my family through Round 2. Which is fast approaching.

And could be just days away per the call I just received from Dr. Friedman.

We will know tomorrow if this weekend is when we go back to Boston for the cath and surgery.

So, the 17 meds plus two injections make Marshall seem healthy to people who don’t know his story.

But they don’t see the behind the scenes things that I see – the subtle, and definitely not subtle – challenges and damages my youngest son has to deal with the rest of his life.

They don’t watch how Marshall, despite being one week from his eight month birthday, sleeps like a newborn still. He averages around 16-18 hours of sleep per day. That worries me. When he’s heart sick, he sleeps more than a newborn. And that worries me more.

They don’t see him struggling to do simple things like grasp when pulled to a sit. Just yesterday Marshall managed to hold on long enough to be pulled to a stand. But his legs gave out in mere seconds.

And if I hold him under the armpits for added support when bringing him to his feet, his muscle tone is so bad he just hunches over.

They don’t see him not sitting like most babies do at this age.

They don’t see him get so tired from just surviving that he just gives up, lays his head down, and stares into the eyes of whoever is closest to him.

They don’t see him work with physical therapists until he is exhausted trying to catch up.

They don’t hold him and shove meds into his mouth as he cries, turns, claws, and screams “Ma ma, ma maaa!!”

They don’t see him whimper at the mere sight of the Lovenox injections which supposedly prevent a potential stroke or heart attack.

They don’t comfort nor calm him to soothe the hysterical cries from the injections, countless procedures, tests, and echos.

They don’t spend four hours of their life driving to Upstate for routine bloodwork because hospitals closer to home have a success rate of 1 out of 6 sticks.

They don’t lay in bed awake despite bone tired exhaustion listening for his breath.

They don’t chase his brothers and visitors with Purell in an attempt to stave off bacteria because a simple bacterial infection could threaten his life.

They don’t know how this feels, nor the toll it takes on every level, on every person who loves him.

They didn’t see what Marshall went through during his first surgery (because those images are much too awful to share).

They didn’t watch him drowning in his own fluids when his heart was failing.

They didn’t see his stroke.

They don’t live every minute under the pressure that Marshall’s heart could decide when he has had enough of being here with us.

They fortunately just see the good this little boy radiates.

How his smile melts and wins hearts.

How his presence evokes a love like I have never seen.

How his laugh is the most joyful sound in the world.

How his struggle inspires us all.

Marshall is a living lesson in patience. And determination. And resilience. And sheer gratitude.

And above all else strength.

So here’s hoping as he approaches this next surgery that he’s strong enough for the challenges ahead…