Saturday, November 23, 2013

A Word from Jennifer

I haven't written in a very long time. And that had a lot to do with being in a car wreck, trying to find a job, being pregnant, and then taking care of Gabriel. A lot has happened since I last wrote. The reason I'm here now writing again is because I feel like I don't have anyone I can talk to about this. It takes up my whole life and I'm constantly thinking about it. The only time I don't think about it is when I'm sleeping. Fortunately, I have yet to have a dream about it. It's my only escape. What is it that has consumed my every thought? Gabriel multiple food allergies. (Read the bold for a shortened version).

No one in my family has food allergies. Evan doesn't have food allergies. How was I to suspect that our son would have food allergies? I don't think that people expect or estimate a chance that their children will have food allergies unless they deal with them themselves. It has completely changed my life. And I know that this is almost definitely going to be a permanent feature of our lives. Unless and until there is a cure for this, he will be considered "special needs" due to the special precautions needed to keep him safe.

I first noticed something was wrong when he was a month old. He had a rash all over his torso, face, and in the creases of his limbs. I learned he had eczema and I should treat it by applying hydrocortisone cream. Months went by and it was still an issue. It wasn't clearing up even though I was using prescription strength hydrocortisone. Through my own research I learned that eczema and food allergies are linked. My next step was to eliminate common allergens. Most babies have a difficult time processing cow's milk protein and soy. Since I didn't eat any soy, I cut out all dairy. (I breastfed Gabriel, and the protein from cow's milk can pass into breast milk.)

Eating and drinking zero amounts of dairy was no easy task. I made it a challenge for Lent to give up all dairy. It was easier for me when I thought about the reason why I was doing it. When I pass along cow's milk proteins to Gabriel, it caused his skin to inflame and itch. He would scratch his head when he got tired or if he woke up while sleeping. We tried wrapping him while he slept, but that couldn't keep his little hands from making his face and scalp bleed. We tried cutting his fingernails, putting mittens on his hands, putting Aquaphor all over him. None of those things worked until I eliminated dairy. Within two weeks of Lent, his body wasn't red all over. He slept better. People noticed and commented on how well his skin looked. When other people notice, you know it's working.

As he got older, I started to introduce foods. I didn't give him dairy since I knew that was something he already had trouble with. One day I gave him scramble eggs for breakfast. After tossing his cookies within the hour and diarrhea the rest of the day, I figured that eggs (in eggy forms) were out of the question for him (but in baked goods was okay).

Fastforward a little. There was that one time my brother Josh let Gabe have a bite of his pb&j breakfast bagel. With just the smallest taste, his face broke out in hives. Peanuts were out. Up until this point (8 months old and avoiding dairy, egg, and peanut) I'm okay. In my research, I learned that with dairy and egg, my kids outgrow those allergies before starting school. Peanuts, he had a mild reaction and people have paved the way for people with peanut allergies so it could be easy to avoid.

A few days before his first birthday, I decided to make homemade pesto since the store-bought ones I had seen contained dairy. I found a recipe that called for cashew to make up that creamy texture. I made the pesto, gave Gabriel a small taste and went back to stirring. I'm busy making dinner and he's at my feet whining and pawing to be picked up. I look down and notice his cheeks are red. I picked him up to wash his face. It was worse than I thought. His lips were swollen and blistered. There were hives on his cheeks. He was rubbing his eye. I began to panic. I didn't know what to do because this was something I've never in my life experienced before. I didn't know how bad it was going to get. I really did think that he was going to go into anaphylactic shock. I buckled him in his carseat (I debated if I should hold him or buckle him) and took off for help.

We eventually made it to the ER. He was given benadryl and some steroids. His reaction didn't progress thankfully. The doc gave him a prescription for the EpiPen Jr. that I now carry around with me religiously. It probably puts all religions to shame how I never go anywhere without it. I had a skin prick test done and he tested positive for the known allergens stated above. The allergist wouldn't test for anymore because he doesn't believe in over-testing and didn't want any false positives. He's enough for another story another day.

How I really feel about it all
The cashew is what sent my over the edge. His severe reaction is what hit me that this is real. This is a very real thing for us. Some food allergies come and go. Peanuts and tree nuts are typically there to stay. That's when I knew that our life was going to be forever changed. And it has. He is different. This way of life is very different for me. He will be limited in what, how, where he is able to eat. This requires a lot of pre-planning and preparation on my part. Anytime there is food involved with social activities, I have to find out what is being served, what is safe and not safe, then bring his own food just in case, and keep other peoples' food away from him because we all know he will find it, and put caution tape on him so that other people know that he can't eat food unless it's from me. If you've ever taken care of a 1 year old, then you know you get tired from just watching them run around. I have to physically follow him so he's not touching or eating anything that could kill him (I'm talking food not about swallowing pennies here, but that also counts).

The big thing that makes me feel like I can't talk to anyone because I don't know anyone who goes through the same thing is when I walk through the grocery store, I want to cry because he is severely limited. At this point I know where in the store I need to go to get the exact product and brand that is safe for him. And even then I still check the labels. Meal planning is frustrating because I feel like we eat the same thing over and over due to the restrictions. Fortunately he loves fruit, and vegetables can be a hit or miss. I try to keep things fresh by introducing new foods and recipes but it's so hard. For every 100 recipes out there I surf through, he can have maybe 1 or 2. It's taxing on me emotionally and since Evan is deployed the burden falls solely on me. I don't have a shoulder to lean on or someone I can bounce ideas off of. Being the dam and the river is hard work. It's constant pressure battling to see who can stay up the longest. It's either "this isn't fair!" or "this is our life now!" and there's no one who knows what it's like.

You can feel sorry for me. You can feel sorry for us. It doesn't help. Even though people say they want to help, they still don't do as good of a job as I do because it's not serious for them. It's not real for them. When you panic the way I did and see your child swell up and wonder if he's going to die because of something you gave him, then shit gets real. I live with this threat everyday. Anytime we are at the playground with other kids there and they've brought food. Or we are at the grocery store and passing by the nuts is unavoidable. Whenever a friend or family member touches him and I don't know if they've washed their hands and face. The threat is there and it's real for me. And I carry this burden alone. No amount of apologies or hugs is going to change the fact that I live a very different life than anyone I know.

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