This is about a little boy who has to be restrained in his sleep all night so he doesn't tear open his skin. This is about a child who doesn't even respond anymore when strangers tell him to wipe 'that stuff' off his face and then look horrified when they realize it's not food. This is about a kid who's starting to realize that everyone else doesn't itch all.the.time. This is about my son, who's probably heard the words, "stop scratching" more often than he's heard "I love you."
A few weeks ago I reached into the backseat of the car to hold his hand and help him stop scratching his legs. He sighed and in a rare moment of seriousness he said to me, "I'm so tired of myself." I asked him what he meant. "I hate my body. I just...wish I could have a different one." A minute later he was laughing and acting goofy, like normal, but my heart was breaking. I decided I had to do something. I can't give him a new body, but I can help him make the one he's in a little better.
When did you realize Davis's medical concerns were more than typical? What did that feel like for you as a mother?
It took longer than you'd think. Part of it was that it came on gradually. Lots of babies get rashes, you know? So I wasn't all that worried initially. Even when the doctor said "allergy" and I started eliminating foods from my diet, I wasn't all that concerned. Being active on the LLLi forum for so long I'd seen lots of moms go through it; eventually they'd find the foods that were causing problems and eliminate them and everything would be fine. I was confident that would happen for us too. But it never did. It just kept getting worse; he developed open sores on his face and arms, he lost his fine little baby hair in clumps with skin attached, he started having terrible watery diarrhea, became uninterested in the world around him, lethargic, just wanted to be held. And needed to be held because if we put him down he'd start scratching.
I'm not sure when it really hit me though. When you deal with anything on a daily basis it becomes normal to you until something shakes you out of it. So I've had a few 'wake-up' moments over the years. There are obvious ones, like the day the GI doc told me I needed to immediately stop nursing and take him off all solid foods, the time the immunologist sat me down with test results and said "your son is very sick," the phone call from the day care when they told me Davis wasn't breathing (it makes my throat clench just writing that). But one of the earliest that I remember was when a friend came to visit me with her baby. Every time the poor child moved I tried to grab his hands. It had become instinctive for me- stop the scratching. It made me wonder how often I stopped my own baby from grabbing for a toy or trying to touch my face or explore his own body. And the other baby was so so soft. I'd forgotten how velvety a baby's skin was supposed to be and how wonderful it was just to be able to stroke your baby's cheek or arm while you're nursing or cuddling them. It hit me that Davis was rarely touched that way, almost never stroked or kissed. People didn't try to eat my baby's cheeks or toes. Other than close family they hardly wanted to hold him, which was fine with me because I didn't know what detergent they used or if they had perfume on or had been eating peanuts or whatever else might make him worse. I remember crying after my friend left that day, just from the realization that my baby wasn't normal and the sudden fear of how that must be affecting him already.
As a mother I felt helpless. And guilty. And you wouldn't think those two could go together, but they do and it's not a fun combination. I was stuck thinking if I could just FIGURE IT OUT I could make him better. It was in my power to fix him if I could find his triggers and make them go away, so I felt guilty that I couldn't and at the same time completely helpless because nothing worked. It was so intensely frustrating that I couldn't do that for him. It still is.
Davis has multiple food allergies and chronic eczema. As far as his food allergies go, we have a list of known allergens, a list of foods he's tested not allergic to but seems to react to, and a huge number of foods he's never had because we can't reliably introduce new foods while he's broken out. We're hoping the extensive testing they do at National Jewish will help clarify what he can safely eat and what he can't. It would be a huge bonus if we are able to open up his diet to foods we've been avoiding most of his life. We're not sure yet if he has asthma. His breathing problems so far have been sporadic. Incredibly frightening, but sporadic. So that's another thing we're hoping to get some answers about in Denver.
We've been to a variety of specialists; allergist/immunologists, dermatologists, gastroenterologists, even a geneticist. He's undergone extensive testing and we've been fortunate enough to rule out serious immune disorders and genetic defects, but no one has been able to determine why Davis has these problems. This isn't unusual; the underlying causes of eczema and food allergies are not very well understood, there is no cure, and the truth is we'll probably never know why. All we can do is work with what we've got and make him as safe and comfortable as possible.
I would wave a magic wand and heal him. I would give him a chance at a normal life where he isn't in constant discomfort and food is not a life-threatening enemy. I would take away the memory of how scary it was to be put in an ambulance all alone and unable to breathe. I would make it so he could eat the same cake the other kids are eating at the birthday party or run around and get hot and sweaty without needing to be medicated or sleep all night in his own bed or go just one single day without any part of his body hurting or itching. I would give him a new body if I could. I know some of these things aren't possible, but some of them are within reach and I'll do anything I can to make them happen.
I am honored to help her do that.