Well, apparently I process things by writing about them because when I started typing, this is what came out.
How are we doing in Denver you ask? Well, Davis is sleeping right now. BY HIMSELF. He’s slept through the entire night the past two nights. Today I didn’t grab his hands to stop him scratching one single time. We’ve been very busy so I am exhausted, but happy. The experience so far has been, in many ways, exactly what I was hoping for. And in many other ways, nothing like what I expected.
The physical side of things; the evaluations, diagnostics, treatments, are all pretty straightforward. I knew there would be a team of specialists working together and with me to help figure out exactly what Davis needs to help him feel better and to teach me how to provide it. That is what I wanted for him and it is working out phenomenally so far. We’ve gotten his skin in great shape already, done LOTS of allergy testing, and tomorrow we start our food challenges.
What was even more of a surprise to me has been the emotional impact it has had on me to be surrounded by other parents who understand exactly what we live with on a daily basis. I can’t even explain it with words. Let me tell you instead about the first day we got to Denver.
We hadn’t even started the program at the hospital yet, we had just settled in at the Ronald McDonald house (which we are so fortunate to have gotten into; it’s an amazing resource that I may write an entire blog post about on its own). A group of student nurses from a local school came in that night to make dinner for all the residents, so there were lots of people gathered in the kitchen having a meal. I saw a little boy about Davis’s age out of the corner of my eye and all my attention zeroed in immediately. It triggered that instinct I mentioned in a previous post- stop the scratching. The way he rubbed his eyes with the backs of his hands and ran his fingers through his hair, scratching behind his ears and neck was so intimately familiar. I quite literally had to clench my hands into fists to stop myself from reaching for him. My eyes darted to where I knew Davis was, in the play area next to the kitchen, just to confirm it wasn’t him. And then I heard his mom say, “stop scratching.”
I teared up. I felt silly about it because I wasn’t exactly sure why it made me want to cry, but it did. I just felt in my gut they were there for the same reason we were. I wanted to say something, but in an environment where everyone is there because their child is sick or injured, possibly life-threateningly so, initiating conversation can be awkward. Of course it’s not awkward at all for the kids, all it took was them noticing each other to start playing together. Then the volunteers broke out the tubs of ice cream and I saw the mom checking the ingredients and I knew without a doubt that they were just like us. Once again, my throat got all tight and I had to blink a few times to keep from being that weird chick that keeps staring at the kids funny and crying in the kitchen.
We did end up talking, of course, and they are here for the same program we are, which has been great for the boys to have a friend and for me to have another mom to talk to and compare experiences with. But being at the hospital with an even larger group of parents, all of whom have kids with variations on the same issues, has just been that moment in the kitchen over and over again. Some are further along the journey than us, which is interesting to see and learn from. Some are newer to the game. None of our kids are exactly the same, but we all keep sharing those looks- the understanding nods, the sympathetic smiles, the teary moments in the parents-only group where we can finally let down our shields a little bit and let the exhaustion and desperation and fear show. We are learning from each other as much as from the medical professionals.
I see our future in some of these families. I see our past in others. I see that we aren't alone and while I’d never wish these challenges on any child or any family, it does help to know that there are others walking the same path.
We start our food challenges tomorrow. Wish us luck! I will be there, making sure Davis has no idea how anxious it makes me, knowing that I don’t have to let it show for the other parents to know that I’m quietly suppressing my worries. I have hope. I am confident in the care we are receiving. And even if we get nothing else from our time here, all it takes is one look at the little boy sleeping like a stone on the bed behind me for me to know it has already been worth it.