discouraged and hopeful

Two words that have come to my mind lately. The first a lot stronger.

Roughly 80% or more of my “mommy worry” is connected to food allergies. What can Maya have for dinner? Lunch? Breakfast? Will we EVER be able to eat out as a family? Why is she coughing, sneezing, breaking out in hives? How many more times do I have to watch her disappointed face look at her friends devouring princess cupcakes at a birthday party? How can I ever send her to school? What if Griffin has food allergies? How can I prevent them? Can I prevent them? What if she never outgrows it? What if the epi-pen isn't available? What if she trusts someone giving her food that puts her life in danger? What if...

Several things have occurred in the last 2 weeks that crushed my confidence of living a food allergy life and instilled in me a fear and unpleasantness that has consumed me.

1.We found a gelato place where they serve homemade sorbet here in Mesa. The very friendly, Italian owner assured us that his ingredients were the finest and not a drop of any kind of dairy was ever found in his luscious recipe. We had taken Maya there once before, where she gobbled up an entire cone with a generous scoop of strawberry sorbet on top. Afterwards, she complained of a tummy ache, which makes my heart drop to my feet (especially after watching her eat something new), but we resolved that it was just from eating so much so fast. My parents were recently in town visiting, and we thought it would be fun to go out for gelato/sorbet again. I was diligent in only ordering Maya a small cupful of lemon sorbet, which I insisted she share with me. We sat down at a table and I hurriedly scooped as much of the sorbet in my mouth, so as to not give her too much. As I watched her eat, I was scrutinizing every movement she made, every swallow, grimace, every breath.  She made some comments about her mouth. Was her tongue swelling? Was it just because it felt cold? What if some of the sorbet had been scooped by a gelato scooper? That heart rush feeling again. She said she needed water. She had eaten here before. She is fine. Then why do I have this feeling? I took her to the bathroom to wash her sticky hands and then to the car for some water, as the rest of my family enjoyed their gelato. Still complaining about her tummy ache, I came to the realization that this was just not worth it. I definitely did NOT enjoy myself going out for sorbet. I don’t think she was any more excited about it than when we give her some in the safety of our own home. It just wasn’t worth it. Who cares about going out and buying sorbet? The truth is that I did. I wanted more than anything to be able to treat my daughter, take her out and have her enjoy herself just as she sees countless other kids doing in restaurants, etc. Because it seems that we always want most what we can't have. But on that drive home I concluded that we really didn’t need to go there again. The fun outing of buying sorbet was completely masked with that looming fear and agonizing over whether or not she was having a reaction. From now on I would just make her a sorbet cone at home, done!

2. We went to Target. Finn sat in his car seat in the cart, where Maya usually sits. It was late, so Maya wanted to sit in the big part of the cart. Okay, fine. Thirty minutes finding what we needed and headed to the cashier. Maya wanted to walk now. Brett’s face twisted as he pointed to her arm and told me to look. On her forearm were hives unlike any I have ever seen, spreading together into one big, massive welt. I knew right away it was from milk. The only thing to do was to wash her skin. I took her to the bathroom only to find the same thing on the backs of her thighs. That heart rush feeling again. I received some awkward and curious looks as I scrubbed her skin with soapy water and felt sorry for Maya having such a crazy mother. She needed a bath and Benadryl. The tricky part is trying not to overreact as she is watching our every move. She follows our lead, and I don’t want her growing up paranoid, but how can I avoid that? No more sitting in the backs of those cheap plastic carts at Target. I can handle that.

      3. The Monday after the Target incident, we went to Gymnastics class. FUN! There was a spot open for the class following Maya’s class, so we opted to stay a second hour. I took her to the bathroom for a potty break in between classes and noticed the same kinds of hives on her legs that I had seen at Target, only not as many. Sigh. Really? At gymnastics? What could she have possible come in contact with? Do they ever wash the mats? Not again. So I washed her legs really well with soapy water and decided if they didn’t start minimizing, then I would take her home. They did, and we stayed. But seriously, at gymnastics?

     

      4. The same Monday after the gymnastics fiasco, Maya’s good friend Avery turned 4. We went to her party, where I knew there would be cupcakes that were not allergy free. I talked to Maya about it, and she seemed fine and content to bring along an egg full of jelly beans and marshmallows instead. Okay, good. At the party, it was time for the singing and blowing out of candles. The girls gathered around the table with big eyes as Avery’s mom brought out close to 50 beautiful purple and blue Rapunzel cupcakes. My heart sank. It just HAD to be Rapunzel, Maya’s hero. I looked at Maya and she was a good sport, singing and clapping and smiling. When it came time to actually EAT the cupcakes Maya stood still, silently watching. I mean she was watching every last bite, and I literally had to hold back the tears. She was so sweet and so loving and it just wasn’t fair. Why did she constantly have to be singled out? I pulled it together and noticed that on top of the cupcakes were rings with Rapunzel’s face on them. Perfect! I took a few off and washed them. I showed the rings to Maya, and her face lit up. She looked at me and said, “For me?” It was heart wrenching. Awesome. The cupcakes were gone, and she was happy. But how many more birthday parties will be like this one?

      These four events obviously left me feeling extremely discouraged and lost. I write about them to remember and learn from the experiences I've had. I hate the fact that Maya is always singled out. Whether at birthday parties, restaurants, in primary, at the park, at Costco with free samples, the list goes on. But it’s what we have to deal with. Honestly I think she’s fine most of the time and not even bothered by any of it. But it’s those big brown eyes that affect me as she looks at other kids enjoying what she may never be able to. Like all parents, I just want her to be happy and healthy.

      In contrast to the dispirited feeling I have had, I am forcing myself to look outward to the positive things that have happened recently in spite of food allergies. In no particular order:

      1. Awareness of the AFAA. They have such a strong community here in Phoenix and support for those living with food allergies. A lot of activities, camps and play dates all year.

      2. AFAA Easter Egg Hunt. There were hundreds of eggs filled with non-food items and toys. Maya had her face painted and met the Easter Bunny.  It was so much fun and there was no worry of disappointment from filtering through her candy and tossing out what was bad for her.

      3. Maya is outgrowing her peanut allergy. This news was huge and so encouraging.

      4. Amazing primary teachers who go out of their way to bring allergy free snacks for the whole class. It is so much better when Maya knows that she is eating what everyone else is eating, rather than being singled out eating the ‘not so fun’ snacks.

      

      5. Maya was able to run the bases after the Cubs and Dodgers spring training game. She was ecstatic. I love to see her so happy and want to hold on to that happiness forever. 

     

      6. I found amazing soy nut butter from Whole Foods. It really does taste like peanut butter. And it was cheap!

I’m trying my best to focus on the positive things and realize that there are many ups and downs. The last few weeks just happened to be a long series of downs. And if Griffin also has food allergies, then we will deal with that when the times comes. 

Here’s to a whole lot of ups!