We are twenty-one months out from the very first time I saw my son, and also the very first time somebody told me he was severely ill - hypoplastic left heart syndrome - the phrase still echos in my mind, and as it rattles around it still manages to shake a few tears out of my eyes, because even nine months out, that memory is so fresh and I can feel that uncertainty and fear in my bones like it was only yesterday.
I have to tell you though, from one parent living in a medically dramatic world to another, normal does infact come.
It doesn't come wrapped in a big beautiful ribbon. It doesn't come in a form that you could ever possibly remember from life before, and it doesn't come as a signal ending this new world we are in, no. It comes in the form of giving medicine second nature. It comes in the form of becoming good friends with parents just like you. It comes with building your normal life, around your crazy medical portion, and it all working like a big, synchronized, beautiful mess.
It doesn't come wrapped in a big beautiful ribbon. It doesn't come in a form that you could ever possibly remember from life before, and it doesn't come as a signal ending this new world we are in, no. It comes in the form of giving medicine second nature. It comes in the form of becoming good friends with parents just like you. It comes with building your normal life, around your crazy medical portion, and it all working like a big, synchronized, beautiful mess.
If it seems crazy right now, if it seems like too much and as if you will live in a constant smoke screen of "what the hell?" for the rest of your days, you might. It might stay pretty crazy, don't let me convince you that it will become easy, breezy, and beautiful. That might not happen. However, whatever it becomes for you, you will find a sense a normalcy. If you look hard and long enough you will see your new normal dragging itself across the sidewalk ever so slowly on its way to you, don't worry; it will get here.
After twenty-one months, I've become pretty settled into this life. Right now, our personal journey is at a nice little rest stop. My son has been cleared for a few years (if all stays well, You see a pattern? Normal becomes uncertainty, and pre-packed hospital bags.) After living in this, soaking and marinating in it, I don't think that I could ever unlatch my heart and soul from it. I couldn't abandon the heart family community, the graciousness I've felt from volunteers and people who've went out of their way to help us. The love and strength I've seen in little eyes of warriors, all of it. I could never abandon this. Regardless of where our journey takes us.
Accepting the ride is necessary, but I think the things you will learn, the strength you will find, the humbleness and generosity of others will certainly surprise you. I think twenty-one months in, you won't be using the phrases "why me?" as often. There is nothing like your world crumbling around you that causes you to re-build something much more beautiful than before, and although I wish my son was a perfectly healthy child, he is still perfect the way he is. This journey became our normal, and because of this normal that I never could have thought to ask for, I have gotten the chance to become a much better person.
"A happy life consists not in the absence, but in the mastery of hardships." Helen Keller
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