Illness to Identity

I knew as my eyes began to well with tears halfway through Andrew Solomon's TedMed Talk that this moment, this experience, would forever change my thinking.  The talk was amazing, the content thoughtful, and the delivery eloquent; but for me, the opportunity to hear this talk live just before Caroline finally received a diagnosis offered me much-needed perspective.

For a little over a year, I had been working very hard to overcome many of the emotional struggles that go along with being Caroline's mom.   Caroline is medically involved and developmentally delayed; a combination that until recently had not been explained by a medical diagnosis.  Thus I spent countless hours going to doctors appointments, researching specialists, working with therapists, and even more time worrying about her future.  The first year of Caroline's life was spent getting her healthy enough to live and the second and third years were spent searching for a diagnosis. For me, I spent Caroline's first year of life worrying, the second year focused on her delays and challenges, and it was only in her third year that I was able to let go and become her mother. It was during that time that Caroline and I developed our inside jokes and gained a deeper appreciation for each other.

It was really hard for me to bond with Caroline. She was fragile at birth and the loss of Brit was still fresh.  When Caroline came home she cried for 16 to 18 hours a day and I didn't know what was wrong but  despite what the doctors were telling me I knew something was wrong.  By the time Caroline was 4 months old, I was spending over 30 hours a week managing her care and talking about her "deficits" with various professionals. This does not even speak to the challenges associated with trying to feed Caroline--I would literally spend 90 minutes  trying to get her to drink an ounce of milk by mouth.

Today, Caroline eats about 80% of her calories by mouth, can walk-can run, uses over 20 signs, is starting talk, can pretend, and has the most engaging personality.  Her smile lights up a room and her laugh is infectious. Caroline is tenacious, loving, and thoughtful.  And today, I appreciate Caroline for all that she is and all that she can do.

Andrew Solomon's talk captured the essence of my relationship with Caroline and how her diagnosis shapes not only her identity but that of our family.  Regardless of the label, the set of traits that combine to produce a diagnosis for Caroline are part of who she is--just as her struggle to overcome or live with those challenges will be defining parts of her personality--and for that reason Caroline's illness is her identity.  Caroline's diagnosis may shape her identity but she is so much more than her diagnosis.