The allergist lovingly called it a “caterpillar.” The sweet little “caterpillar” was dipped in allergens, then pressed in to the skin on my son’s back. Immediately, he started begging me to wipe it off. He cried and said, “It itches! It itches! Get if off!” I knew by just looking at his back that my son was allergic to something… and pretty severely too.
I distracted him as best as I could, but even his favorite gadget (my phone) couldn’t keep his hands from trying to wander to his back so he could get a swipe at the itch. The doctor came in the room, studied the welts, then broke the bad news. Jackson is allergic to ragweed, walnut trees, oak trees, and wheat.
This means my son has a gluten allergy; he is allergic to wheat in his food.
Once the doctor said all this, I tried to listen well. Really, I tried. But tears pricked my eyes as I tried to take in what this means for him and our family. The doctor was one of the best I’ve been around in a while; his manner was caring and incredibly informative. He was willing to talk WAY more than I was willing! He knew the news was rocking my world, and I had fears of what to feed Jackson for dinner just 2 hours later. The doctor gently led me through breaking down what I was already planning for dinner, and gave me peace. I left his office armed with pages of information on what ingredients are no longer safe for my little guy, and called my husband to break the news. The very next call was to my friend Gina (who had already assumed the news when I texted as Jackson was begging me to wipe his back), and she quickly talked me through a few things.
And I realized everything needed to GO. Or at least be scrutinized before it was declared safe and re-shelved. Dan didn’t quite understand my panic, and we had a little stress over that the next few days. I had to keep reminding myself that Jackson has an allergy that is NOT life-threatening. He’s been eating wheat since he was weaned, and has been fine. But I also knew that if I wanted him to start feeling better and his behavior to change, every “unsafe” meal would count against us from here on out.
By the time it was all over, I had three trash bags to throw out the next morning. And lest you think I was wasteful, please know I had a bunch of expired food that needed to go anyway. The items that weren’t safe and hadn’t expired were put aside for a food pantry.
After three hours, I had a safe pantry and a safe fridge, and felt a little more relief. But I had no idea what to feed Jackson for breakfast in the morning, so I scooted myself out to the local high-end grocery store and spent an hour and a half going up and down their organic food aisle. (The more expensive aisle I never venture down because I never needed to until now!)
Over the next few days, I was bombarded with well-meaning people who were really just trying to help. I posted our news on Facebook, and ended up finding out so many of my friends have gluten allergies as well. They gave me tips upon tips upon TIPS, and I started buckling under the weight of it all. I got to the point where I really only trusted 3 people’s opinions, and the rest I just saved in a document to sort through later.
The people I loved the best? Those are the ones who took the time to personally connect with me. Not just shoot me an email full of 800 website links, but the people who walked through the grocery store with me and the woman who came over on Halloween night because she knew I’d be spazzing out on such a big holiday after only knowing about this gluten allergy for less than 48 hours. (AND she brought us gluten-free food!) What a beautiful, glorious example for me on how to love other people when they are going through upheaval. I was shown first-hand what is helpful and what is not. (Please, Jesus, help me remember this lesson!)
There were some shining moments in the midst of this madness. One was on Halloween night, when a teenager came to Trick-or-Treat and asked for canned goods instead of candy. I gave him an entire wagon load full of items I cleaned out of the pantry just two nights prior. I was ecstatic that my bad news had a silver lining. Another shining moment was when I finally caved and had a deep heart-to-heart with Dan about my fears and worries over this news. We were able to meet at a place of humility and forgiveness, and came out united for our kids and each other.
I also had another friend who showed me great empathy when her daughter’s birthday party was approaching. She threw up the red flag for me (I wasn’t connecting the dots very well) and helped nudge me into the mindset of thinking through the lens of a food allergy child attending a birthday party. I’m grateful she was thinking when I wasn’t.
The other shining moment has been ongoing for the last three weeks. I have been amazed at my sweet boy’s ability to adapt to this new lifestyle, and he has handled it beautifully. The only time he felt a little dismayed was when we talked about that birthday party I mentioned in the last paragraph. I asked if he wanted to eat one of the homemade Lunchables we’ve been making for his lunches lately, or if he wanted pizza. He chose Lunchables. But when I explained the other kids were going to have pizza and I wanted to make sure he didn’t feel left out, he changed his mind. His sweet voice said, “I want pizza. I want to join in.” (Hearing “join in” broke my heart, because I knew this allergy meant he would sometimes not be able to “join in.”) So we brought our own gluten free frozen pizza, and the party venue people baked it for us.
I’ve had so many people ask me why we got Jackson tested. That is a long story, but I’ll try to keep it short. Mostly, Jackson has just been a little more difficult for us to handle. He is NOT a bad kid; please hear me on that! I know he has a good heart, and that’s why his problems with acting out and being impulsive were so frustrating. I knew that he knew better, and he was frustrated that we couldn’t understand him and that we kept punishing him. Looking back over the past few years, I see peaks and valleys full of parenting books, behavioral classes, endless Time Outs, and anger and frustration for all of us. Things crystallized this past year especially.
Around this time last year, I was interviewing for my job. I remember thinking, “It’s a little earlier than I was planning to go back to work, but it’ll be good for me to earn money so I can pay for Jackson to go to school more than one day a week. He needs the interaction and stimulation, because I’m just not enough for him anymore.” And I got the job and he started school three days a week, but those problems didn’t go away. They got a little worse. He acted out at school, got in trouble (not lots, but often enough), and it just didn’t feel like things had been solved. But we plugged through life, and I kept telling myself it would get better when he started Kindergarten. Again, it didn’t. It’s not that things turned horribly wrong, but Kindergarten wasn’t the stabilizer I was hoping for. I had been talking with two separate friends of mine who are counselors, and the question of his diet came up, as well as testing for ADD. My friend Gina had been talking with me about food allergies for a while, and had sent me doctors’ names back on July 1, so it was definitely in the back of my mind. When things just kept escalating in October (Jackson had gotten on yellow and red at school a few times), I realized I didn’t want to wait to find out if they were going to get worse. So I took him to the allergist… and now you know the rest.
As for how he’s doing, I’ll say this: removing gluten from Jackson’s diet hasn’t given us a brand new child. He is still impulsive. He is still giddy and zealous and passionate. He is still Jackson. But now he has a better chance at controlling his impulses. He hasn’t turned into an angelic child but in just a few weeks, he has been able to think more clearly and communicate better with us. We can reason with him more easily. When a temper tantrum starts to launch, I’ve even been able to short circuit it and get him to disengage. And if the tantrum still ignites, there is less force behind it and he comes out of it quicker than he did before.
As for me, I am relieved to know there is a piece of the puzzle that fits into place. Allergy testing isn’t the key that unlocks every door to my son’s personality, but it helps to know I can stop blaming myself for being a bad parent. [Please don’t use that as a reason to leave me a comment and say I’m not a bad parent! I know I’m not, but some days I felt like it was my fault for not being able to change my family’s reality.] Having an answer to at least one of my parenting questions provides an incredible amount of peace.