"Once upon a time, there was a little boy who wanted to go to the beach and see the ocean. But he was too sick." I don't know why I found myself spontaneously starting to tell this story one day almost a year ago. Maybe I was sadistic and for some reason just wanted to make myself cry. It was May, I think. I was at the hospital holding my 8 month old boy after being admitted for months. That past winter we had longed for the first summer with our new baby. He would be done with his second heart surgery (in March) and ready to go outside and play and go with us on hikes and camping trips. But that summer never came. He didn't tolerate that 2nd surgery and his future was looking grim. We were coming to the point where it looked like he was inevitably in heart failure and transplanting would probably be his only option.
So that day, in that hospital room, I thought about how wonderful it would be to just take my little boy away, to a beach far away. He could feel his skin touch the sand and put his feet in the warm water. But I feared that day would never come. Honestly what I feared most of all was that he would continue the painful existence he was experiencing - in the hospital with chest tubes constantly in and out, and then not make it out of the transplant - and never get to experience normal life. I just got it in my head that if I could only take my baby boy to see the ocean..
Well we were lucky enough to get a summer. He stabilized enough to come home on oxygen, continuous line of milernone (IV drug), special formula by tube, and lots of meds. He was restricted to a 1 hr radius to wait for his new heart. It wasn't the summer we had dreamed of but he did get to see his home and the sunshine. And he did somehow survive the transplant and now has the chance for a full life.
I was reading McMama's blog the other day and saw all the photos of her Carribean cruise with baby Stellan. This photo, which I think she captured beautifully just about brought me to tears.
Stellan is quite an amazing little man who managed to survive some severe heart dysfunction in utero to be a beautiful healthy baby today and have his first beach vacation. If you've never met MckMama or her fam go check it out http://www.mycharmingkids.net/
And it reminded me of that dream I had a year ago that I still long for. We have our goal now. We will get Alan healthy and strong enough to travel and he will finally see the ocean and feel that sand and water against his feet.