Wednesday, June 23, 2010


Last summer we started talking about next year.
In the fall we wondered what the next nine months would bring.
In the winter we were told we had about six months to prepare.
At McKay's March appointment we were told to plan on July.
Today, we realized all that time was gone.
We are talking about days now.
Just 11 days to be exact.

All the preparations have been made.

My sweet boys will remain behind with friends and family. They are scheduled for fun day and night and will probably be disappointed the party is over when we come home. Let's hope so.

We're on the list for a room at two different Ronald McDonald houses in the Philadelphia area. You call the morning you hope to arrive to see if they have a room available. I usually like to plan a little further ahead than that, but we're learning this journey is all about going with the flow.

We think we've figured out the impossible process of getting a continuous flow oxygen concentrator onto a commercial flight. Lord please help us meet the right people to get us onto that flight without a hassle. I really might lose it for good if we have to fight that battle.

We've purchased a new rolling car seat designed to get Mr. McKay into and out of the plane and into and out of cabs without completely losing our minds trying to carry all of the bags and equipment he needs. He travels like a complete diva. That's okay-- because he is FAB. U. LOUS.

Now all I need to do is find the courage to hand my baby over again. Hand him over to a stranger who although well-pedigreed and unbelievably highly recommended, is still a stranger. He will literally open up my child before him and rely on experience to guide his decisions. Most of which we're told will occur on the fly. Because, of course, there is just no way to know what will work best until they are actually staring at the twisted miracle of McKay's unusual anatomy.

Damn it. I hate this part.

I hate it because I always shut down. I get quiet and bugged and self aware that I am not at all the person I prefer to be. So I try to fix it by not thinking about things. But there he is. All 29 pounds of soft, ticklish love. So I melt into a complete puddle almost daily and start the process again.

Of course not one ounce of this is about me at all. I am just a privileged ticket holder with a front row seat to McKay's journey. And he is happy. He is ready to be free of the cords that are holding him back. He is ready to give up cold, clammy, purple toes. He's ready to trade in arms that look like he's been dying jeans all morning long for something of a pinker hue. He's ready and so are we.

I hope our journey is more comical than it should be; our adventure more heroic than we deserve; and our child more watched over than we can imagine.

We have cheered from afar so many long-shot victories from our precious heart friends. And I'm ready to step up and claim one for my McKay.

I worry a full month between posts can get you get kicked out of the heart blog support group. If that's really true, I'm glad I've barely made the deadline back into your good graces. We need your advice, your inspiration, your I've been there done that, keep getting out of bed and loving your child sensibilities. We can do this because we have seen you do this. Thank you for telling your stories. It helps us write ours.