Guest Post by Axa Carnes
The cruel reality of this illness is that nobody knows how long it will take a child to recover and neither the child nor the family will ever go back to what was considered as “normal” before the illness.
I asked myself and others “how much longer?” and “are we there yet?” when I was going through the terrifying stage one and then again when we seemed stuck in the never ending stage two. I continued wondering how much longer as my daughter experienced paralyzing social anxiety, exercise compulsion, weird phobias, PTSD, sensory integration disorder, and started struggling in school. These were all issues that appeared for the first time in her life right after we had supposedly gotten rid of the eating disorder!
In the midst of the uncertainty, I chased promising pots of gold at the end of various rainbows. Among others, I ran after the reach the ideal target weight rainbow, the maintain weight for a certain period rainbow, and the treat the co-existing condition rainbow. Chasing the rainbow was necessary and brought improvement but expecting that “normal” would be found at the end of it, left me disappointed and frustrated.
One day, I had enough and stopped chasing magical pots of gold at the end of rainbows. I threw away the expectations for normal and the self-imposed deadlines for recovery. I came to a point of acceptance that maybe “as is” was as good as it was ever going to get for my daughter and for us as a family. I accepted that she would never be “normal” like she was before the illness and I focused on the progress that she had made. A funny thing happened, *I* changed. I stopped waiting for the elusive “normal” and started loving and accepting my child as she was at that point. I don’t know that things changed overnight, but since I wasn’t ticking off days in the calendar any longer, time frames didn’t matter to me at that point.
When I found my rest in what I had at that moment, not at what I wanted to have, things got much better. I stopped putting pressure, mostly unspoken but felt nonetheless, on my daughter to be normal and to get over “it”. This new normal wasn’t bad, it was just different. My child was not a little girl any longer but a beautiful teenager who had emerged as a warrior with battle scars to prove that she had battled a deadly illness. My husband and I had grayer hair and more wrinkles as the result of many sleepless nights, and hours of worry over our daughter. My younger son was wiser with an awareness of vulnerability and risk, that a pre-teen should not have at that age. Our family was normal in the way that only families who have experienced catastrophic illness can be normal.
I have found that this new normal both requires and allows me to live thankful for every little thing that my children do that reflects our familial bond and all that we have conquered together. When my daughter kisses me or snuggles up to me, my heart soars with joy. When I hear hearty laughter between my son and daughter, I feel warm inside. When my husband and I stand together as partners who will not be manipulated by our children, they understand that we have something unique that was born out of a relationship tested by fire in the midst of crisis.
I now live in the moment with one foot placed in that fun state of living life with abandonment and one foot firmly planted in a reality that demands caution. I indulge myself on occasional glances towards the past that bring a small twinge of pain but that are necessary so that I can keep a keen eye towards the future.
Axa Carnes is a past F.E.A.S.T. Board Director and has been a member of Around the Dinner Table since 2007. Axa's daughter was diagnosed at 9, refed at home, weight restored by 11 and has now been in recovery for 6 years.