I think at some point we are supposed to be at ease and stop with the BIG worries and just continue with the little worries that come with having a kid who has received a few livers in his lifetime.
As I was helping Lennon in the shower I couldn’t help but notice his veins that are still so darn noticeable. I was holding my breath for a moment wondering if they remained the same as if they have changed and I was upset with myself for not knowing the answer to the question. It made me look at his belly to see if it is more extended or if it’s normal – well normal for him. I questioned myself if I was missing anything and then I thought perhaps I am just too darn paranoid.
He finished getting himself ready for bed and took his medications. We made his bed together, I tucked him in and kissed him goodnight. He acted normal and just like Lennon does when he’s well.
I know that if anything was amiss the lab work would show this and they would have called me by now. Since Lennon’s transplant was in CHOP and UVA is handling everything here, I generally won’t hear about them until CHOP gets the results and calls me. But it also reminds me that I can simply just email or call to make sure his labs are alright tomorrow.
It’s in moments like these that bring back everything Lennon has undergone, lived through and I as a mom of a special needs kiddo have experienced.
The good, the bad, the ugly and the hope. It brings me back to the days when his days were all about quality because we simply just didn’t know and frankly as I sit here and write this, we still don’t really know. We hope, we reflect and we hope some more. I usually don’t dwell on the difficult times and let the dark clouds enter, well until moments like tonight when looking at those veins staring back at me.
I still hold my breath a lot more than I like to admit but I suppose it comes with the territory of the life we’ve experienced thus far. It’s only been 2 years since his last major surgery – his body is one slow to heal in some aspects but he has come so far in so many other ways. I hope that I can rest easier tonight just thinking about the little (and big) things we have been able to celebrate since then.