Wishing and Hoping

Life continues to be good to us at home. Our own special brand of good, but good. We may be operating a few degrees east of normal, but we are together in our own home, and it's a healing time for all of us.

We're still just getting through the days, one day at a time, but those days are getting better and better. Watching our boy return back to us, bit by bit, is a gift. I'm not ringing any victory bells just yet, but there's no ignoring the amazing grace that has covered our family these last months.

As much as I try to bury my head in the sand and pretend we are a normal family, reminders creep back in the oddest moments. Every time my phone shows an unavailable number on the caller ID, I have a small panic attack before I even answer it, thinking it's the transplant team calling to change our lives forever. Every time someone asks for more clarification on his transplant process, it serves as another reminder that we are not finished with the race just yet. (To clarify, I don't mind the questions at all, so don't feel bad if you are one of those who have been asking questions. I need a little reality in my fantasy bubble now and then.)

We start our rounds of appointments this week, and I'm dreading them. It's so much easier to pretend that he's going to be okay when he's here in the bubble. Taking him back to the hospital means taking him back to the reality that he's not, and will never be, a normal kid.

His own heart will take him as far as it can, and then - God willing- he'll have the gift of a new one. While it is a gift- the most precious gift- it will still not be enough to make him normal. The risks are real. The risks are huge. The risks are something we can't ignore. No... While he will be special and blessed beyond belief, he will never be normal.

It feels wrong and ungrateful to be so anxious in a place we've prayed to return to for so long. But the reality is there's nothing to anchor us to here. We're just waiting, drifting towards the next chapter in our lives, and it's so hard for me to just enjoy the now instead of trying to peek into the future. That's not my personality, and it's hard.

There is no avoiding the journey, or the work. But the good news is there's no avoiding the hope either. Hope is what offers direction and focus and energy. Hope helps us to see past the uncertainty, to better. Hope may not take away all of my fears, but it gives me a way to fight back against those fears.

Thank you Lord, for giving us hope.