The road so far…
We’ve come a long way on this journey. As a baby, my little guy was an itchy mess who hardly slept through the night. He’d find a way to itch no matter what we did. We covered his little hands with socks and he’d still find a way to rub his face and little body. When we held him, he’d rub is face and chin against our clothes. He had a little wiggle dance he’d do when he was laying. That squirmy dance paired with his gloved hands made him look like an inch worm wiggling his way around.
His itchiness impacted our lives. We didn’t sleep well because he didn’t sleep well. We worried because his skin would be missing and scabbed over. We worried because this behavior isn’t normal for a baby. All new parents or parents of a baby feel stressed and feel the lack of sleep. But with our undiagnosed food allergic baby, life was beyond words. I worried and stressed and felt helpless to help him. It broke my heart to see him so miserable and not be able to fix it.
At six months, he was hospitalized with an abscess and the hospitalist recognized an allergic child almost immediately. She referred us to his allergist. I’ve learned since we were very lucky as many parents are not allowed to test their kiddos until after 1 and some not until after 2 years! That seems appalling to me given our experience. But I digress.
Knowing was a relief and a battle all of its own. It felt good to put a name, a label on what was happening to him. As a nurse, I understood the life-threatening possibilities. This brought on more fear and anxiety. Especially as his skin seemed to improve but then break-out randomly without knowing a cause. It was struggle emotionally, especially in the beginning. Food was a comfort but yet deadly to him. Trying to keep him safe and keep relationships became a challenge. No one understood what I was going through. No one wanted to help me. I felt completely alone. I felt that people nodded their heads one second and would just as easily shove prohibited food in his mouth the next. My husband and I were two parents against the world.
I could write about the stress and how it affected our marriage, but I feel that could be a post in and of itself. I will say, that even a rock solid marriage like my husband’s and mine felt the waves of stress. It was inevitable we’d feel it pulling and tugging at us. Luckily, we are strongly bounded and this struggle has, in my opinion, strengthened our bound.
Then came the food challenges. Each one brought new hope and fear. A couple brought bitter disappointment tears.
Tears shed could also be a post of its own. I’m not a crier. I don’t tear up often and few have seen me sob. Too many days during this whole thing, I’ve spent time behind closed doors with tears rolling down my cheek. I’m certain many people in life will be surprised to read that last statement. But yes, I’ve cried over food allergies enough that my body shook. I am strong and his food allergies have made me stronger. I’ve accepted the fact that sometimes I have to cry and cry hard.
Now, in the present, he passed his second food challenge. We are now adding baked eggs into his diet. He is on week two of muffin therapy. Thankfully he loves muffins and doesn’t mind eating them daily for two weeks straight. I’m not sure what next week will be for his daily food but I’m hopeful for something other than muffins. Mostly for my Little Guy’s sake but also because I’d like to bake something different.
I’m not sure what the future will hold. I’m not sure if he’ll continue to outgrow his other allergies. I’m not even 100% certain we’ll get eggs back despite the muffin therapy. I am sure many parts of the past could be in my future. I do know I feel anxiety when I think about what the future will be.I feel nervous and anxious at the thought of school. And, parts of me still wants to take my family and live in a bubble in Alaska. But running and hiding won’t work for a little boy who wants to live his life. Who deserves to live his life.
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