The pace of my life can only be equated to riding a rollercoaster.  Sometimes I white knuckle it and scream, other times I laugh.

And once in a while when the ride s-l-o-w-s down, I catch my breath and have a good cry.

Yesterday the ride kind of crept to a snail’s pace.  And it seems that I’m not the only one having trouble catching my breath.

Marshall’s appointment with Dr S in Syracuse yesterday was tough.

Having four boys in this crazy world isn’t easy.

But my GOD it’s so worth it.

Helping the youngest of the boys fight the evil of Congenital Heart Disease with every beat of his heart only adds to this feat of daring we all so gladly undertake.

Marshall is one of the most amazing humans we’ve ever met.

Ask anyone who meets him.

He was such a good boy during yesterday’s appointment.  He showed off his new sitting abilities in the waiting room by squeezing in on the bench between Michael and I.

He waved at the reception desk.

He sat still for his EKG.

He wiggled all over running interference with the 02 monitor and blood pressure cuff.

He babbled and held my hand watching Baby Einstein through the echo.

Then we went back to the exam room and waited for Dr S who was juggling some terrible emergencies and apologizing profusely for the wait.  (He’s the best in our homeland and we don’t mind waiting at all!)

Then it was time for Marshall’s exam. We mentioned how purple Marshall’s head seems and how these tiny vessels have crept up all over his little chest.  Dr S lingered (too long… mommy radar is always right) listening to Marshall’s heart.

Then Dr S rather nervously offered he needed to re-review the previous echos in the other room.  As he stepped out, I couldn’t stand the wait any more.

I posed: “So, what about the echo?”

He said he’d get to that when he came back.

Then he did.

And I am thankful he did though I rather wish he didn’t in some ways.

It seems the total anomalous pulmonary venous return confluence made in the repair during Round 2 is still blocking itself off. Dr S rattled the numbers ( he has other lives to save in addition to Marshall’s) stating that when we left Boston Sept. 19, the gradient was 4.  Then it went up to 7.  Then 10 at our last visit with him.

And Dr Friedman’s “only worry if it goes to 10-15” when we were heading home rang so loudly in my ears I had to fight panic in my eyes.

I didn’t cry in Dr S’s office (thankfully sparing Michael and Marshall that humiliation).

But nothing could stop the unswallowable lump in my throat.

The gradient is now 17.

Dr S had already called Friedman while he was out.

We’re heading back to Boston for Marshall’s cath as soon as scheduling tells us to (likely on Sunday if not sooner).

After the appointment we met with some really great friends who fed us and supported us through this not so great news.

Then I cried the entire ride home while Marshall slept.

Tears greeted me over coffee this morning knowing we have to leave again.

Each trip to Boston gets harder and harder.  The best place for Marshall is home with his brothers.

Something I never, ever take for granted.

I feel rather foolish for wallowing sappily like this.

The timing is awful because we’re only halfway through birthday season.  But things could be so, so, so very much worse.

There’s nothing about this experience that I expected to be easy.

(Please don’t misunderstand this next part.  I am not complaining.)

Here’s the BUT.

Sometimes carrying all of this is so hard.

So please help for the sake of these boys.  Please send some big, strong thoughts that Marshall will rock through this as he has everything else.  Please send support.  Please send a good thought.

Please.

These good thoughts and the world’s best team are what arms Marshall’s fight.  Your prayers and good thoughts are the artillery of his war.  They are what have gotten him this far.

And though I find it ridiculous to even worry about something as trivial as money as my heart just aches for my baby and big boys, please send financial help if you can.  Our fourteen weeks at Boston Children’s this year in addition to keeping food on the table and a roof over our heads has consumed all of the savings I had (plus all of the proceeds from the benefit.)

So yes, it’s without shame or pride I ask.  I ask with forgiveness that I even have to.

Because I don’t know how we’ll get through this next hurdle without each other.

And I don’t know how we’ll keep it all together.

And I don’t know what the future holds.

But I do know the only time my heart is at peace is when all four of my boys are under the same roof, in the same place, with me.

As always, thank you so very, very much ❤