I have a secret. One that I’ve held since Matthew was first born. One that I haven’t told but a handful of people. In fact, not even Rusty knew this secret until a few weeks ago. It’s not something that I like to admit, even to myself. But, it also isn’t something that I can escape. It’s a …feeling?.. a fear?… It’s a reoccurring thought. I hate thinking it. I can’t escape it. I don’t want to speak it, almost as if speaking it gives it power, makes it real, makes it inevitable. I know life doesn’t work like that. I know God doesn’t work like that. But, I’m human, and my brain can’t stop itself from, for a split second, scolding myself for shining a light onto this thought and ‘making it real.’
So here it is. My secret. Since day one of listing Matthew for transplant I have had this thought that he is not going to survive the transplant, or at least won’t be with us for long afterwards. I still feel a great peace about listing him. I’m still sure that it is what God wants us to do for him. I’m well aware of the statistics and survival rates at our hospital. I know that transplant is the best option for him. This thought doesn’t change the path that Matthew is on. The path that we are on. But it does haunt me.
Every month that I refill Matthew’s formulas and medications I think “Maybe this will be the last time I have to refill these. Maybe the call will come.” and then I think “..and maybe it’s the last time I refill his prescriptions.” Every time a friend says that they are hoping the call comes soon, I agree, I too hope it comes soon, but I also dread it. Because every time we talk about the call, I hear my brain telling me that it could very well be the end. Every time someone expresses frustration at how long we’ve had to wait, I agree. It is frustrating! But, I also hear my brain telling me that perhaps, God is making us wait so that we will have had a lot of time with Matthew before He takes him away. Maybe it isn’t really a transplant that we are waiting for after all. I’ve said since day one of this OTC battle that I know God can take Matthew away at any point and I have to be okay with that. I will be thankful for my time with him. I log away every second of every day. I daily send up prayers of thanks for my time with him. I cherish every tear, every smile, every cuddle. Because I know that they could have very well never been, and there is a chance that they will end sooner than they should.
I’m not sure why I’m sharing this. I guess it was just time to let it out.
Perhaps I fear that God is going to make me walk out my promise to love Him and be happy for my time with Matthew, no matter how long He chooses to give Matthew to us. (even though I know that God is Love. God does not actually work like that)
Perhaps everyone who has listed their child for transplant has these thoughts. I don’t know.
I hope not. I hope it’s just me and my crazy train rolling down the tracks.