wonderbliss ~ live a life worthy of the gifts you've been given.

I've come here several times recently - opened up MT and stared at the blank box waiting for words.

How many times can I write about how absolutely amazing my son is? Or about how terrified I am of his surgery? Or about how every time I open my email, I dread the message we're expecting from his cardiologist with the date - the date that is maybe 2, 3 months away?

Do you know how short 2 months is?

He has started hugging us tight at night. He says, "I love you!" when I leave for work. He said thank you, unprompted, when his friend handed him a toy today. He has music in his blood and would fall asleep holding his "saxamaphone" if we let him (which we do, sometimes). He still naps in his swing and I can't bring myself to move him off bottles of milk yet. It's a little piece of his babyhood I'm not willing to let go of just yet.

I was talking with my friend the other day about our kids growing up - that one day they will come home from school and go to their room and close the door. That one day, we won't know every little thing that happens to them. And I realize - I've had no problem with Sammy growing up. Sure, I've had little meltdowns when I realize that he's never going to be as small as he is right now, but on the other hand, the closer we get to that magical five-year mark, the better off we are in the long-term with his heart. I can handle getting him to five. I have no problem with the time passing to get us to five. But after that? Dropping him off at kindergarten?

Excuse me while I curl up and cry.

I do a lot of that lately. Crying, that is.

I shouldn't. But I can't help it. We are a mere few weeks from handing him over again, from waiting, waiting, waiting while they do things to his body that make the inside me want to scratch and crawl out of my own skin. I know that once it's over, we'll be okay. I know that once we're there, we move into hospital mode and it's so different than real-world mode. But I dread not being able to comfort him, dread him not understanding what's happening to him and being scared and angry about it all. I know he'll bounce back from it, but I dread the time while we're going through it. How do you explain all of it to a two-year old? I am grateful for these surgeries, as we wouldn't even have him here with us today without them, but on the other hand - how awful for a small child who is just beginning to understand the world to have to go through. How does that make sense in what he knows the world to be? Where will the pain and fear fit into his experience? Will he be mad at us? How will I handle that?

And sometimes, just sometimes, all the what-ifs creep in. Sure, Boston had something wonderful like a 99% Fontan survival rate last year. But what if?

I can't cope with that. Sometimes I don't have the energy to cope with normal, everyday things. Other days, I'm doing okay. Other times, still, I think it would be best for all involved if I just pulled the covers over my head and slept it all away, slept for days and weeks until I have the energy to cope again. And other days, something sets me off and I get so angry that I have a hard time calming down. (Beware, giant vehicles parked in the Compact Car section!) I keep promising myself that I will get better after this surgery. I have to, right? After all, I imagine there's only so long they'll let me keep my Ativan. Heh.

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