Wednesday, August 28, 2013

Samuel's self-portait from last week

I know it's been a long time w/ no entry. I'm not feeling particularly more inspired to write than any other time, and yet something has driven me to this keyboard.

Tonight I feel achy and sobered by some happenings of the past 24 hours. I also feel sad and a little pitiful. Yes, as in self-pity. There have been lots of such happenings lately as tonight makes Samuel's fourth reaction of the summer. Surely that cannot be true...let's see... the cross contaminated cereal, the chicken nuggets I made with the wrong flour, the time when a caregiver gave him [ranch flavored] Veggie Chips. And tonight when I purposely gave him a cracker intentionally. Okay, it was two crackers, not A cracker. Two very small, quarterish-sized crackers.

When we went to National Jewish two years ago out of desperation for help with S's eczema, we learned S still had a sesame allergy despite him consuming it often via our beloved crackers and chips. We cut it out completely and the eczema improved. Somehow I had mostly thought it ironic and credited a few other things for his relief.

Since cutting out sesame, I have been coveting the possibility of finding a safe cracker for S. I noticed a new one, two WFoods trips ago and have "visited" the box several times considering buying them. (As I often visit a great pair of boots or maybe a beautiful antique mirror before purchasing.) Upon last night's WF's retail therapy, I read the ingredient list another five times (sesame was toward the end; he used to eat it daily near the beginning of the list with nothing worse than eczema), and put it in my bag.

Resisting the urge to pack it in his lunchbox late last night, I gave him two after school. I'll spare you the the details of how calmly I passed them off to him, brother and Dad; prayed in the kitchen afterward, etc.

He loved them. Yet a few minutes later he was telling me his tongue was hurting. Not itching as the other times this summer. No spitting. No hives. But "hurting a lot" and "Mama, is there wheat in these crackers?"

Damn. Once again I have to decide how to respond. Once again I have to struggle with the reality of him not trusting me to give him safe food. I didn't epi. Gave Benadryl instead and watched closely, still trying to be calm and reassuring. I explained what I did and hope he understands. But I feel, in his trying to act like he might be okay, he doesn't.

He recently confessed to me that he never wants to try sunflower seed butter because he doesn't think he will like it, but also, mainly b/c he is scared it will be contaminated with allergens (which is the reality of the other two jars I have bought in hopes they would be safe---which I never fed him). I told him then that I would not give him anything that I thought he might react to. So I guess that makes me a liar after tonight. But I really didn't think he would react. I thought maybe we'd see an eczema flare tomorrow, but certainly not the "my tongue hurts" thing.

It's been about three hours since and he is fine. Or he was when I last checked on him one minute ago to check for hives and breathing. I'll probably check another 9 times before the night is over.

So there is that.

There were some other poignant things that happened last night and today that made me sad. One example---him asking me to order him the "safe Lunchable". He is super curious/attracted to those things! ...About six months ago I thought I found a safe version online and mentioned it...only to discover they all have soy protein if nothing else. So when he said last night, "Mama, you can take out the cheese and the crackers and the oreos. You can put my safe oreos in there..." I had that achy feeling again. This time making me feel both thankful that he intellectually understands and can now creatively think about/substitute like only a brilliant FA Mama can, and both sad that he is thinking about/substituting in his head like only a brilliant FA Mama can.

Yes, I know I should be glad he doesn't have XYZ, or that he can even think or eat at all. I actually contemplate such things often and AM thankful that it's "only food". And yet, the ache and grief is real and certainly valid. Especially in light of so many FA parents trying to make sense of Natalie Giorgi's death last month. So here is to those of you who need to hear it, including me...this is hard stuff that needs to be grieved appropriately, especially as we really must be strong, confident and calm parents with our FA kiddos.

...and because I know I always like pictures, I took this today at Target post haircuts while the boys were coveting Chima, dreaming of birthday gifts.