He's Not THAT Sick

Now that we are home, I can't help but look at this little boy with so much energy and his huge smile and think... Wow, he's not that sick anymore.

Never mind the bald head or the bag of fluids that he carries 24/7. Or the fact that he just had blood and platelet transfusions before the weekend and is having a remarkably slow (yet also equally miraculous) recovery post transplant. If I can overlook all of that, and really look at him, with his huge smile and abundant energy, that's the sweet spot. That's where I need to focus. But still, it reminds me of many other times when I've had the same thought.

A couple of weeks after Nathan first entered the hospital, a friend suggested that I sign him up for Make A Wish. I initially shrugged it off and said... No, he's not THAT sick. 

Thankfully, I decided that it wouldn't hurt to apply and my little guy has decided that he wants a relaxing vacation in Hawaii where he can see dolphins and whales when he's all better (sidebar, mommy is very happy with that choice). And the amazing people at Make A Wish are already working hard to help make his wish come true when the time is right. Yes, apparently he is that sick. 

Just the other day, we strung on his latest batch of beads. We love the Beads of Courage program. It is just an amazing way to turn a serious medical situation into a story that you can see and measure and process in a very tangible way. His beads are now long enough to be part of our Christmas tree garland. 99 red beads for blood transfusions, 20 yellow beads for each week in the hospital, two bone marrow transplant beads, too many of those sobering white chemotherapy beads and many many other beads each signifying each and every step in his journey. A few hundred beads measuring well over 10 feet in length. More than any person should have to endure in a lifetime, much less the nearly six month journey of a child who is only five years old. But still, I look at him and compare the person to the "story" and can't help but think... He's not THAT sick. 

His beads reach all the way up to the second floor

I often wonder if I am an optimist, a realist or if I'm just in denial. I think it may actually be a little bit of both. It's a thought I've had many times because his physical appearance and behavior has never matched the clinical picture, not by a long shot.

Hearing the stories of other families, seeing with my own eyes the fragility of life and how quickly things can change or learning the heartache of another child who has earned their wings at far too young an age... He's definitely not that sick.

Looking at that smile and that boundless energy despite hemoglobin levels that would make most adults curl up into a ball in bed all day.... He's really not that sick. 

Then I count those beads, and retell the tremendous story of the past five and a half months of his life. Yeah, maybe he is that sick... but also he's not. 

The good news is that he's on the road to recovery. No, he's not even close to being all better and progress continues at a snail's pace. I think there is a false sense of his progress in the fact that we are home as I get lots of calls and messages from people who are excited that he's better. I shrug, I get it, but if they only knew the story of this boy as deeply as I do. Yes, some things are really really better. We are home, we are together, he can run and jump and play and pretend that life is as it was before. But still, he will never be that carefree little boy that he was on the evening of June 18th and he has a long way to go before he can truly live life again. A life where he's not bound by clinic visits, medication schedules and huge bags of fluid tethered to his picc line. A life where I don't run for cover and slather him in antibacterial spray any time another person so much as sniffles. A life where he can really plan for that amazing wish trip or even go out in public without me having a mini panic attack in the process. But I can see it in our future, maybe just beyond our grasp, and I cannot wait for more of those small milestones that tell me it's coming. The day when I'm no longer comparing the child to the clinical data and reconciling the vast gulf between the two. When I not only know in my heart that he's not that sick, but that he is all better and even better than ever. Because you cannot go through what he has gone through without coming out of it stronger, more joyful and more acutely aware of the beauty that lies in each and every moment on this amazing earth.