I think sometimes we fall so many times that getting back up becomes our daily work. I’m not handling any of this with grace. I’m crass, and I’m without empathy. It’s not a cloak I enjoy wearing. No one prepares you for this.
We thank everything we believe in, whatever we pray for healthy babies. As parents we weather storms that make our hearts hurt and challenge our ethos. No one prepares us for the most challenging choices we will make. These are epically poor choices, but we need the recognition of these poor choices.
Seven days gluten free and we were starting to see small, but measurable progress. After adding all the great gluten again, we have a baby who can barely get dressed. It took her five dresses to find one that didn’t make her feel “crazy frustrated.” Her words, not ours.
I feel like a crazy person, again. If this biopsy isn’t positive I will have zero idea of where to start, again. I feel like a crazy person for begging for a positive diagnosis. It is not because I need to feel grateful for answers, but because I need to scream from rooftops for a solution.
I know we have a baby who is struggling. We are just lieing to her at this point. Telling her the snacks we give her are gluten free, but what if that isn’t the answer, and what if it is?
Celiac doesn’t only come with a gluten free lifestyle. It comes with bi-annual diabetes testing, and cancer screenings. It comes with teaching a girl to navigate a world… so even a positive diagnosis is complete shit.
She’s anemic right now. Her body isn’t breaking down iron in foods, because she is sick. Anemia makes her tired, cranky, irritable. We have to make sure she stays this way for 21 more days.
We need a solution. The solution sucks.