We discovered our daughter’s illness the summer of her 16th year. Looking back, the warning signs had been there for probably three or four months; I just didn’t put it all together. She was tired so much of that last quarter of school, but I thought it was just too much going on. She was moody, but I rationalized that she was just being a girl. The symptom that did it was the tan. Emily, in princess terms, was our Snow White – dark hair, white skin. She didn’t like her inability to tan like her siblings, so as we began to go to the lake and she grew brown, she was elated. She commented on it multiple times to me. Again, I discounted it, thinking she must be in some strange puberty thing.
But the tan stuck. I remember her sitting on my lap and trying to take my wedding ring off so she could try it on. My attention was focused on her hands as I was resisting giving up my ring. Her fingers were so tan they just didn’t look like hers. It is funny how you know your child. This is not right, I thought.
I made a doctor’s appointment – a month out, of course, as it was considered a well visit. She didn’t make it a month. Two weeks later she came down with a bug so fast we got her right in. I love our pediatrician, he never laughs at me. I pointed out the nagging tan and told him I had Googled it. The only illness that sounded credible to me was Addison’s disease. He didn’t discount me although he warned that it was very rare. He agreed the tan was unusual and took some blood for testing. Two days later he ordered her to the hospital for immediate medication.
When you discover your child has a life- threatening illness you grieve for the loss of the life you envisioned for your child. Knowing they will be bound to a schedule of medication, a body that responds differently to life, and a more high risk future is painful to take in. After a time, a long time, over a year, actually, my pain eased as I witnessed my amazing child cope and develop a discipline I never imagined possible.
