Invisible Illness Week 2015: I Fight for Answers
It’s a weird place to be in. My fight isn’t my own, it’s for our daughter. And part of why I fight is so that she can blend in and enjoy many things that come naturally for her peers. My fight is invisible to her for the most part, but I thought it was time to make our journey visible to you.
I fight for answers.
When our daughter received an abnormal newborn screening and we were told to re test in case of a false positive, I went that same day. And I waited for answers for three weeks. I called the office to learn the receptionist had the results all along and never called. She gave the results, not knowing how to read them. She told us it was a false positive. She read the wrong category, she gave the adult levels, not newborn. She also didn’t bother to send a prescription from her inbox to the pharmacy that would have given our child thyroid medication. Because of this, we were told to prepare for mental retardation. She missed eight weeks of needed medication. I fought for answers and change.
Through the years I’ve fought for doctor appointments for thyroid issues and asthma. I fought an ER when we sat 12 hours watching nurses and aides flirt with each other while our baby was struggling to breathe and throwing up. My letter to the president of the hospital was used until the hospital closed to train nurses on proper patient treatment as I had a blow by blow description of all we faced as a family—everything but treatment.
- I’ve fought for therapies and services.
- For an IEP to be implemented.
- For insurance to cover appointments, prescriptions, lab work, and therapies.
- For teachers who didn’t think special need kids should get special services because the other kids weren’t signaled out, why should they?
I’ve fought for lab work and new information. I’ve fought for updates.
And here we are. She’s now 12. The asthma is almost a memory. Her congenital hypoythroidism is the tip of the iceberg, we’re learning. A couple years ago we learned she has Albrights Hereditary Osteodystrophy. This year it was confirmed she has Hashimotos. She is in a regular classroom with an IEP. She participated in our church’s Fun Arts competition where she sang, danced, entered a photo. She was part of the school’s musical with song and dance steps despite her challenge to memorize. She has friends over and also goes to sleepovers, although I worry about medicines and how her sluggish system will affect her during the night.
I’ll share specifics in another post about her diagnoses but I fight so for as long as possible, our child won’t have to.
The consequences have been steep, honestly. I believe I went into early menopause in part due to the stress we had those first few years. It is lonely. This is a fight my husband doesn’t want to be involved in. We made it through the worst experience when she nearly lost her life at 3 months old. Anything else that isn’t life or death, I can’t blame him. But she needs the labs, the IEP, appointments, prescriptions, advocacy. It falls on me. This year has been challenging as she is understanding more about what doctor appointments are about and what others say around her. It only puts more fight in me.
I fight for answers. I fight for our daughter. And I’ll fight after this week of awareness is over. That’s what moms do.
