I just found this post in my drafts that never got published, and I thought I’d still share it. This was originally written in August just after being completely disappointed yet again by another bad test result.
Food allergies. Need I say more? Here we are just after Lexi’s third birthday and it’s time again for re-testing, and I just KNEW that we are going to be able to add something new into her diet this year. So, we go for the allergy skin test and she tests negative to all the grains — wheat, oats, barley & rye! Woohoooo! Then we make our yearly trip down to Children’s to have blood drawn, and we get the results back a week later and they are utterly devastating. In the allergy world, there is a ranking Class 0 (not at all allergic) – Class 6 (severely, holy crap, totally allergic). Lexi was all Class 4′s, 5′s & 6′s for everything. I was in the depths of despair (to quote Anne of Green Gables) for three solid days, accepting no solace from anyone or anything. I convinced myself that she would have this affliction for the rest of her short life and she would soon one day die of anaphylaxis – hey, I’m just telling it like it is… and it was b-a-d! Then I decided we needed to revisit these results with the allergist. David and I really weighed them and decided that since she has never actually ingested (eaten) wheat, we needed to know if it was true. Skin testing is considered to be more accurate and conclusive than the RAST testing, and since the skin test was negative… we wanted a challenge. Our wonderful Nurse Practitioner petitioned her doctor for it, and he agreed that if she could pass the barley challenge (class 4)… then we could go for the gold (wheat – class 6). She handled the barley for a bit, and then she let loose and puked everywhere. Poor girl! I could not have felt more terrible. And after all was said and done, and my heart started pumping again… I went to my hole.
My hole is the place where I can feel sorry for myself. Sorry for my daughter. Sorry that I can’t take her out for ice cream or pizza or a surprise cupcake or to the birthday party of my best friends kid. I can’t even fuss at her to eat her macaroni and cheese for dinner (because, of course, she can’t have macaroni and cheese). She can’t be normal. And, as much as I try to be strong most of the time… because the hole really is no place to linger… it gets frustrating! And angering. Because dammit, I want my daughter to eat like a normal kid and worry about normal stuff. Remembering the life-saving Benedryl and EpiPens and worrying over her and having my heart race just because she gets a little choked up due to swallowing the wrong way, and I worry that her airway is closing is exausting…
…and then I remember Ashley.
When Lexi had just turned one, I had taken her by myself to have her skin test and then to the hospital for a blood draw. To say that it was difficult would be the undertatement of the century! It was awful for both of us. So, after she had her blood drawn, I parked her stroller in the shade in front of the hospital and pulled out a soy yogurt to feed her. I was minding my own business, getting her spoon out of her bag when a little girl walked up to me and asked if I was going to feed that food to my baby. I said that yes, indeed, I was. This precious girl looked at me and said ‘Well, can I feed your baby then?’ And I said yes. She looked like she was about five years old, cute as a button… and without a single strand of hair on her head. While she was feeding Lexi, we had the most wonderful little conversation (although if you asked me what we said exactly, I couldn’t tell you. I just remember how enamored I was with her). She was so sweet and so kind and caring to Lexi, and a few minutes later her family drove up to take her home. I know that God put me on the sidewalk of Children’s Hospital that day so that I could meet Ashley… and gain a little perspective. Food allegies are tough. And scary. And really frustrating. But controllable. Thank you, Jesus, for that. Thank you that we can avoid the things that will harm her. I do get frustrated and upset and all out of sorts, then it takes my memory of Ashley to pull me out of that hole… it gives me strength to move on and deal with my smaller problems. I think we all need to meet an Ashley at least once.