This week while visiting with mom for a few days we were remembering some experiences from early on in our journey with Kimberly. During our conversation we recalled the seemingly endless vials of blood taken from Kimberly in her first few years, in the relentless quest for a Diagnosis. The quest for a reason, a syndrome, a group we could join, so than it would all make sense.
So many days I felt as though we were totally lost. That helpless feeling seemed worse to me than the limitations that may be placed on us and her with a Diagnosis. The doctors seemed to believe, and I concurred, a Diagnosis would straighten out this pathless wandering. It would simplify our situation in that, we could focus. Focus on what Kimberly had/has, learn from others before us, and have some semblance of an idea as to where we were headed. Our “destination” would indicate what Kimberly’s strengths and weaknesses might be as she aged.
Part of me wanted this knowledge, and another, larger part of me, did not. At the time, holding my baby down while the phlebotomist extracted 12 vials of blood, I felt as though it was all so necessary. The answers we sought seemed vital. Ironically enough, the only answers we ever received were that she did not have any of the conditions, abnormalities, or disorders they were testing for. The MRI was normal. The sweat chloride test was normal. The EEG was normal. The comprehensive genetic testing was normal. The Mitochondrial DNA panels were normal. What was not normal was what she was experiencing: the delays, the low tone, the failure to thrive, and other issues I discussed in my first post.
As we passed through year 1 and year 2 the doctors from various departments we visited began to regularly use the word mystery to describe Kimberly. Our sweet girl did not fit into a single “box” they tried to put her in, and I could see confusion as well as some frustration. I felt it too. Sometimes that “box” can be a comforting place. A place where questions are already answered for you. At least that is what you think. Truly, there should be no comfort in the “box”. It doesn’t really exist. Over the past few years I have come to understand that sometimes the worst thing you can get is a Diagnosis. I see family after family receive the devastating news “your child is autistic” (for example). This information is often crippling to them. They have a preconceived notion of what that means. What their child will and will not be able to achieve. Sometimes the doctors will even say such things as: “your son/daughter will never be potty trained, he/she will not communicate verbally, they will never live independently”. As if they know this with all certainty. It is cruel and it can be incorrect. Others in the medical profession like to emphasize the considerable variability in the abilities of people with such a Diagnosis. They can’t have it both ways.
False hope is not what I am advocating for; however, hope and courage to try are essential…the courage to try and provide your child with the opportunities to be the absolute best they can be. If a Diagnosis allows for better health care or an easier time receiving appropriate services than it is a worthy goal. We have experienced that ourselves and know it is just how the system works. With that said though, it should never place limitations on or prevent a child or adult from seeking to achieve all that is possible.