In the last few days, there has been a lot of negativity in the Diabetes Online Community (DOC). Scary stories about kids dying, A1C levels being too high, and the good/bad of going Gluten Free without a celiac diagnosis. Those are only the things I’ve read. I purposely don’t read them all.
But these posts caught my eye…and my heart. The high A1C level that was being fretted over is very much below my daughter’s all time low. (As far as A1Cs go, lower is better…if there aren’t too many hypoglycemic episodes). And people wanting to go gluten free because it seems cool really got under my skin.
I’ve been thinking so much lately about our crazy life with a child who has Type 1 diabetes and celiac and all we do to keep her healthy. And all we endure because we try to keep her healthy. People thinking I demand “special” treatment for my kids. People not understanding when Meredith politely declines a gluten-filled treat and pester her until she has to disclose diagnosis to get them to stop. Eyes looking at us when we check blood sugars in public. People asking why I let my 7 year old have a cell phone (it’s an insulin pump clipped to her waistband, really, it is). These are the negatives.
Today, I have been more focused on the positives. Yes, diabetes can overwhelm me and bring me down. Yes, celiac can as well. However, I have the power to decide that that is not the life I want for me or my daughter. And I can decide on concentrating on the positives.
The kids had a swim meet today. Meredith was disconnecting and reconnecting to her pump all afternoon. She was great about it. She even decided to tuck it in the back of her suit when she wasn’t swimming. (She saw an older kid at FFL do that this summer). She was responsible about it and I was proud. Her blood sugars were running a little high with all the excitement and pump disconnects. Meredith and I decided that it was ok for today and we would correct them tonight if we had to. We decided that we did not want the day to be dictated by blood sugar numbers.
We were even able to find some gluten free options in the concession stand. No gluten free pizza. But they did offer baked potatoes with toppings. Meredith chose a potato with butter and cheese. I was proud of her. Especially because there was a kid having a tantrum because his mom wouldn’t buy him a 3rd slice of pizza. Meredith was content with the baked potato. She was happy there was a choice for her. She knows all too well that she doesn’t always have that option. She also indulged on some gluten free brownies I made last night!!
We are real. We live in the real world. Where blood sugar numbers can rule on some days and finding gluten free options can on others. We muddle by. We get through. We even thrive. It isn’t always easy. Some days I am ready to throw in the towel. Faith and patience get me through. Along with help and support from a loving family and great group of friends. My outlook on this world has changed with each diagnosis Meredith has encountered. Our family has been impacted as well. And we have learned. Learned that we can do this. That we are grateful for what we have and being together is something special.
My Sweet (Diabetic) Celiac and her Siblings make me want to be a better person everyday. I hope they can look back on their childhood and see that I was trying with everything in me to make their lives happy and filled with love despite the challenges we face. Maybe they will know that in the face of adversity, there is hope and the bad doesn’t last forever. These are the lessons I have learned.