When my daughter was first diagnosed with Type1, the amount of guilt I felt was tremendous. I replayed all 1048 days of my little ones life. I went over everything that we had done, every possible cause: every meal, any reaction, every sickness, every doctors visit. From the broken arm at 10 months old to the pistachio up her nose at 26 months old. All the breastmilk, the vaccines, homemade baby food, cloth diapers, not a drop of juice. The fact her A1C was so high, I must have been missing symptoms for months. I’m a nurse, for fuck’s sake, and a good one at that. How could I not notice my 2yo getting sick before my eyes?!? We never could have predicted that her pancreas would become high maintenance, that it would just one day decide to break…or could we??
Two weeks ago, I was diagnosed with celiac disease. Celiac disease causes reactions to gluten that lead to changes in your small intestines. It’s basically a severe allergic reaction to gluten (which is found in wheat, barley and rye — some of my favorite food groups, and ingredients in good craft beer). Celiac is also an autoimmune disease. It happens to be an autoimmune disease that is linked closely to Type1. This is not a diagnosis that was even on my radar, I went in for an EGD because I thought I had an ulcer (not that this past year has been stressful or anything), so I was totally taken by surprise when my GI doctor told me he saw changes and took a biopsy. I was even more surprised when that biopsy came back positive for celiac. I never thought that the stress of the past year would be enough to activate my own autoimmune response. So, on to blood tests it was, and BOOM! I tested positive for the celiac gene. And there is was, the autoimmune gene. The gene that lead to my daughter’s autoimmune disease, the gene that my ovum carried.
Seeing those results hit like a ton of fucking bricks. I am the weakest link. I passed on my total reject gene. Mom guilt overload started in 3…2…1. I am the reason my daughter’s pancreas broke. I probably should never have even procreated. I’m the reason my 3yo has to walk around wearing her pancreas in a polka dot fanny pack. I’m the reason she needs insulin everyday simply to sustain life. I’m the reason my little family watches numbers, calculates doses, and obsesses over every bit of information on possible cures and technological advances coming down the pipe. I’m a horrible freaking mother. Tears were shed, lots of them.
Ok, wait, snap out of it. This is not the end of the world and you are not a horrible mother. You are a freaking fabulous mother. Your child is beyond loved and knows it. She has people who love her from coast to coast. The following texts were exchanged with my best friends “You had no way of knowing before” “You can’t blame yourself, you didn’t know” “Besides it wouldn’t have changed anything” and my personal favorite “I’m super glad you’re getting more stress in your life. I was thinking things were too calm for you guys over there.” Nothing like your best friends to put shit into perspective. They’re totally right, knowing this would not have changed a damn thing. I would have never missed out on carrying her in my belly, on growing every part of her, on pushing her out, nourishing her, and growing another human being (it really is the most awesome fucking experience, I highly recommend it). We still would have had this amazing child with a broken pancreas. She’s fun, and beautiful, and perfect, and cool. She’s got this kick ass personality, which she also got from me. Ornery and feisty as hell. And I can’t wait to see what kind of amazing person she grows into, what awesome things she accomplishes and I’m the luckiest person in the world because I get to have a front row seat, even though now I’ll be drinking wine instead of craft beer.
Triumphs, Tantrums, and Type One 