Taking To The Hills

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Tomorrow marks the one year anniversary of when we found out Marshall was a boy.

And when we found out about Marshall’s extraordinary heart.

Just remembering that day brings me to tears.

To say this week has been easy would be a total, absolute lie.

To say the weeks since we were freed from “Hotel Boston Children’s” have not been extremely difficult would also be a total, absolute lie.

To say this past year of my life has been the hardest I’ve ever lived is the absolute, unadulterated truth. Knowing it will only get harder before it gets easier is a constant reminder to just savor now. At times, especially days like today, now gets away from me and I think ahead. And there is so much to worry about. I dread Marshall’s second surgery. There’s so much at stake. And being away from my big boys for another extended period of time is a thought I can’t even consider right now. And there’s the financial concerns…these are trivial to me in comparison to pulling my family through the next few months but still a major issue…

Thank goodness for the people whose support, good thoughts, prayers, and kindness have steadied this roller coaster of a year.

Sadly there are a select few people in Marshall’s, the big wild boys’, and my own lives whose criticism, judgment, harsh words, and questionable behavior have made the 364 days since August 22, 2013 much, much harder than they needed to be.

Attempts at bridging the gap were a painful, heartbreaking feat in futility.

And as you all well know, I don’t accept defeat easily.

So for now, I have chosen to retreat. And to concentrate on refueling.

That said, I’m disconnecting from technology (except for reading my first ebook…a cheap treat to myself.) And I may post some pics since Marshall’s fan base requests them regularly ;-).

Then I am taking to my favorite hills with my favorite people to celebrate these four little men who light up my life.

And I am going to lean a little on the love of my family to help me gather my strength and regain my ability to stay in the here and now. Tomorrow always takes care of itself.

As for today, however, Adirondack pine filled air will not only be good for the heart but also magnificent for the soul.

Outpatient

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Marshall’s apointment with Dr Friedman went well.

We have to have some blood work done and we will be on OUR WAY HOME 🙂 

Echo looks good.  Marshall looks great.  He has gained some so it is a matter of optimizing his calorie intake…will fiddle with that after speaking with nutritionist.

We will need to follow up with Dr S (Marshall’s cardiologist at Upstate) in 2-3 weeks.  Then return to Boston in 4-6 weeks for a cath and Glenn surgery depending on how Marshall is doing.  If he is still doing well at that point, the team may hold off on the cath & Glenn for another 4 weeks or so. 

Thanks so very much for the good thoughts and prayers. .they are working 🙂

In No Rush

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We left three hours later than we had planned and are Massachusetts bound.

Trust me, I am in no rush whatsoever to go back there.  In fact, it seems like we just left.  The threat of Marshall being re-admitted isn’t helping the way that I am feeling right now.

Each and every goodbye with the big wild boys gets harder and harder. 

I miss them already and we aren’t even out of New York…

But I will do what’s best for our little miracle as long as I can…

Please send some good thoughts if you have any to spare.  So many thanks ♡