The art of losing isn't hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.
---Elizabeth Bishop, "One Art"
Friends keep telling me how easy living gluten free will be for my little one. How manageable. How it will get easier in time.
Family seems focused on what she can't have. How deprived the poor thing will be.
This is all strangely familiar.
Aren't these the same comforts and comments we offer to those newly diagnosed with diabetes?
I'm not afraid of reading labels (I already do that), I'm not afraid of educating future teachers (I have plenty of experience there). I already cook all of our meals at home (recipes to come, y'all).
I think I've raced ahead to thoughts that are hard to articulate.
In the beginning, diabetes seems like it will be about the needles and the test strips and the weighing and measuring of meals. It ends up being about something entirely different.
Diabetes is so manageable, people assure you. It will get easier, they promise. In the case of diabetes, these are little white lies we tell to offer comfort.
Autoimmune disease, though, is about living on edge. It's about feeling a little damaged. It's knowing that your body betrayed you and it's about suffering consequences every time your disease reminds you of its presence.
There is a Discussion That Must Not Be Named. We, the "damaged" parents, speak of it in private phone conversations, direct messages, close circles of confidentiality. We don't talk of it openly and we assure one another we shouldn't entertain these thoughts. These thoughts...
My child inherited autoimmune disease from me.
I couldn't protect her. I breastfed her for 18 months, I introduced gluten while breastfeeding, I delayed dairy. I had a healthy pregnancy.
The hospital did force formula on her for five days despite my protests and tears. But really? It seems positively futile to place blame there. As my husband and I always say, you make the best decision you can make in the moment with the information you have.
This reality sought her out. It found her, despite how lovingly I wrapped my weak arms around her. It chased us down and wrenched her from me like a dark wind.
I wanted my kids to have only the best of me.
Yes, yes, it's "manageable." Livable. She will be "fine." She'll "never remember" a time she was celiac-free.
I know. (I should warn you that I genuinely don't accept comfort and support well. I will snap at you.) Yes, yes, I know. (Because I can handle anything.) Stop it. I get it. I mean, thank you. Of course, yes, we will be fine. Thank you.
I'm a support giver, not receiver. An information sharer. When I'm on the receiving end, I'm defensive and critical. It's not you; it's me. Seriously.
I know we will thrive, regardless, but I can't escape the feeling that I've lost something. A game. A race. An opportunity. A degree of innocence.
I also know that I can't know. I can't say definitively that it will end here, with this diagnosis...I can't see whether a more vicious autoimmune disease (like my own) lies around the next corner. But I can hope this is the last of it. I will keep my head up and ride on, chased by the wind.