He asks me almost every day. "Mommy, will you lay in bed with me after my surgery?" "Will you read stories to me after my surgery?" And every day, I've reassured him.
And I have no idea what to tell him now.
It breaks my heart because I hate the idea of breaking his.
R & I are not decisive people. At all. We've sought counsel, we've prayed, we've debated, we've waited & finally, finally, we came to a decision. A little boy's queries to a surgeon, his requests to be able to do more activities like writing and coloring with just one hand - those pushed us over into a decisive yes to the surgery.
We sought three medical opinions from top surgeons all over the country. There was one opinion I tried to get a year ago and was told "no." I couldn't get past the nurse as they claimed her opinion would be the same as her colleague's whom we had already seen.
So we've planned and prepared and because we were given hope from the surgeons we began to prepare our little boy. We thought this was going to be possible. Soon, he would be able to grasp more objects with one hand. We believed this to be reality.
Last week, at the hospital in Dallas, the surgeon walked into our pre-op appointment. Except it wasn't the surgeon we've seen countless times. It wasn't the one we had chosen to do the surgery. It was the one I had been denied access to a year ago.
Turns out, she didn't agree with her colleague at all. In fact, she informed me that doing the surgery was setting him up for failure - that she didn't think it was possible to give him the chance to grasp effectively with one hand this year.
And then I was blindsided with an entirely new surgery, one I had never heard of. It's complicated and I still haven't fully researched it. I don't fully understand it but it would be a series of surgeries and bone repositioning and stretching and it's not possible until he is maybe 6 or 7.
This means that he would have to wait at least 2-3 years before even the possibility of helping him be able to grasp more objects with one hand. It means he will be in school and face a lot of absenteeism and missing out on extra curricular activities and possibly face delays in school, not to mention relearning basic skills that we are working on now - like writing. At age 4, this wasn't such a big deal. It's big for a 7 year old. And it means he has to continue struggling to keep up with writing until then.
The whole meeting felt like a huge wreck. I was blindsided. And her bedside manner quite frankly, stunk. But I'll spare my heart the repeating of some of her insensitive comments made while my child was in the room. (I had heard the rumors about her bedside manner. I'm sad to say she lived up to them.)
But she is a renowned surgeon so maybe she is the answer for us.
Or maybe not. Maybe we're going back to Boston soon to talk to that surgeon, yet again.
I felt a peace finally about the first option.
Now I feel a peace about nothing. In fact, I'm finding myself struggling each day since then - I thought I could do something for my little boy - that this was something we could given to lessen his struggles, to increase his function, to eliminate a difference for him.
I don't know which surgery we should pursue. I don't know when or if we should pursue it at all. I don't know which surgeon anymore to trust to do it.
And mostly, I don't know how to tell my little boy that it's not happening anytime soon. And that maybe it's not ever going to happen like we had thought.
And that breaks me.