Friday Reflections: Are We There Yet?
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.
This is fabulous, just fabulous. The final paragraph sums it all up.
ReplyDeleteYou just beautifully summed up where we are with our 7 year journey in the land of ED. We are among the 50% for whom FBT didn't lead to a full recovery. I have to admit that as the years started to slip by I beat myself up a lot feeling like we had let our d down. I have come to the realization, though, that while our d didn't fully recover, FBT kept her alive long enough to mature and participate more fully in treatment. We are now in the position of supporting her where she is at right now and holding the safety net should she need it. I will always be hopeful that she will realize a full recovery but like you, am enjoying my d and family where we are at at this moment. RuralmomUSA
ReplyDeleteWell-said. I think this is the hardest thing for people to understand and in many cases the pursuit of a "return to normal" actually makes things worse.
ReplyDelete