How fitting that this month is Celiac Awareness Month. At the request of Marie’s doctor the rest of us are being tested for Celiac’s Disease. My blood test came back normal, but Anya was positive. She cried when I told her. I expected at least that much from my girl who feels everything so strongly she doesn’t always know what to do with it. I told her we’d wait to make her go completely gluten free until we confirmed with the specialist. This week the specialist looked over her test results during a follow up for Marie and told us that it is highly unlikely with Anya’s numbers being as high as they are that she tested falsely. So – much to Anya’s relief – we are foregoing the endoscopy for her because it was the opinion of us as well as the specialist and her therapist that it would be a lot to put her through unnecessarily. She’s been making great behavioral strides, and we’d hate to set her back with this.
So. We have already been gluten free at home, but now Anya is going to have to be that kid who can’t eat the treats at Girl Scouts and birthday parties after being able to up to this point. I don’t look forward to that for myself or for her. Gluten is in so much, and all it takes is a crumb to make her sick so I know how careful her friends and caregivers are going to have to be. And I just hope it doesn’t cause her to be ostracized, or for people to just roll their eyes at me as “that mom” and ignore how seriously it needs to be taken. Everyone has been great with the Asperger’s diagnosis so I’m hoping for the best, but I know it won’t be an easy adjustment for anyone. And that accidental exposure is sure to happen when others aren’t used to looking at everything she’s around under a microscope to check for sure if it’s safe the way I have been her whole life preferring organics and nothing artificial (especially dyes!) and even more so now that gluten is a concern.
Poor kid is winning the genetic lottery with two conditions so far that will be lifelong battles. As her mother I want to save her from everything, but I can’t save her from any of this. I can only make her environment as safe as I can until she can look out for herself and provide her with the tools to navigate all of the social, emotional, and physical obstacles of Asperger’s she will have to work hard to overcome. Her therapist is always impressed with her and says she is where she is because of me and what I’ve done for her due to my own experiences as someone with an undiagnosed case of Asperger’s that’s managed to learn to deal the best that I can and live a pretty normal life despite no outside therapies. He is confident that with the help we’re getting her now she will flourish. And that brings relief to my momma heart.