Totally Two

Mr. Magic turned two last Friday.

Before the party, there was a fishy gift or two.

"Ish. Ish." It's the only word Mac says with any regularity. Now he has his own tank; just the thing to encourage his fascination with the deep sea.

His "Ish, Ish" cake was covered in special details.


Chock full of love and personality courtesy
bakers and artists Aunt Hilary and Uncle Ron.

A major monsoon brewing outside brought our picnic plans indoors. Which meant fishing for prizes over the balcony rather than in the pond.


But no matter, there was much to celebrate and everyone made the most of Plan B.



No one more than McKay. Although he's still a bit overwhelmed by crowds and very weary of anyone outside his inner circle coming within 10 feet of him, his spirit seems to be coming back. He's quicker to laugh, more willing to be held, and more inclined to share a smile than he's been in weeks.


Watching our happy boy return back to us and enjoy a celebration meant just for him, was a gift.

Truth be known, just a little more than a month ago we avoided talk about his birthday plans. Who, what, when, where? It seemed too risky to discuss. We were getting through today. Just today.

But two? Turning two meant we had an entire year to look forward to. It was a milestone that made me want to gather everyone in. I've felt very private about it. Quiet. And not at all how I expected to feel.

Starting this new chapter feels amazing and unsure. Up until now there has always been a huge surgery, a milestone to work toward and prepare for. That type of work and worry takes up thought and time. However awful, the milestones so far have been concrete, unavoidable, sure.

Now, post-fontan, at home, ready to try "normal," there is less to count on. McKay is not "fixed", but he is as well as he's ever been. He's not through with surgeries, intervention, procedures, but he's through for now. It's all ad hoc from here on out. And although it might seem strange to feel anxious in the land of better than ever, the truth is there is nothing sure to anchor to here. There is just tomorrow and the next day and the day after that. We have climbed our next mountain of sand and we will do our best to stay on top until the landscape starts changing underneath our feet again.

Our best guess is that we have about 8-10 years; a decade before things get too serious again. At least that's what it seemed with the age groups we saw in Philly. Babies. Toddlers. Pre-teens. That seemed to be the age spread as we wandered up and down the halls of the cardiac floor at CHOP.

The plan is to return to Philly every year. It will be a family trip - the brothers three for a yearly pounce into the city of brotherly love. We will visit for check-ups and check-ins. For studies and research and access to the most renowned set of post-fontan specialists in the world. McKay is now affectionately known to the heart world as a "Single Ventricle Survivor." It's a title we were not aware of until we had actually joined the club. And it's a title we will fight to keep.

As my pediatrician advised this week, "It's time to stop worrying about surviving, and turn our attention to thriving, developing and helping McKay reach his potential." Speech therapy will begin next week. This kid needs a voice. Somehow I think his lack of language to this point has been a tender mercy.

We are more than grateful. To be at home. To be surrounded by family. To be celebrating.

Happy Birthday my totally two!
You have taught us to live deeper, appreciate more and move on more quickly than we could have ever learned in a lifetime without you.