I remember how I felt finding out about how serious Katy's neurological condition was. I was terrified. Katy was only one year old and it was hard to believe that she would not develop normally. I can recall asking every physician involved with Katy about their opinion concerning her future.
"She struggles with sitting right now, but that's only temporary, right?" I once asked her physical therapist. "You can never tell," she answered "all we can do is treat the child and wait."
I couldn't believe that a physical therapist could not know whether or not my daughter was going to be fine. I so badly wanted to hear a word of hope from an expert.
Months later, I traveled for hours to see my daughter's geneticist. By then, Katy's seizures had disappeared. at 18 months she had not only mastered sitting but began crawling as well. I was sure that she was on the quick path to recovery. Wanting to hear good news from an expert, I asked her geneticist what he expected of her development into adulthood.
He told me that we should make sure she went all the way through high school and then had her pursue a single skill so that she could eventually find a simple job. Among his suggestions were hotel cleaning and fast food chains. After all, according to him, she was never going to have a high IQ. I told the doctor that I wanted much more for her, to which he replied -
"Well, the way I see it is: somebody's gotta flip my burger."
I went home feeling defeated and devastated. I screamed. I cried. I prayed...
Then, I dusted myself off and moved forward. In my time of grief I made some conclusions. The doctor's were simply doing their job. Now I needed to do mine. Katy was MY daughter, not theirs. Conclusions about her destiny are better left in the faith of a loving parent.
As many of my readers know, Katy has beat out many odds and is on her path to conquer all of her giants. But now I work in a special ed unit for a public school, and I see parent's devastation very often. I see their hearts crushed as an "expert" labels their child with mental retardation, or any other destiny robbing title. I watch how the parent pins his hopes and fears on the words of these licenced clinicians and it breaks my heart.
Because I can relate.
If I could write a letter to every physician, doctor, therapist and any other person relevant to a child's medical files I would say this:
Finding out that my innocent child has been "unfairly" robbed of her future is a devastating experience. I am grieving, and looking for someone higher than me to validate my hopes and dreams. In the middle of my darkest moments, I may turn to you yearning to hear a word of hope. If I should ever ask you what the future holds for my baby, this is what I wish you would say:
"The fight of faith is an individual one. I am a doctor and you are a mother. My job is to assess and diagnose your child. I can't change what I see, but I can encourage to to always hope and believe that the best is yet to come. I am here to help you find a treatment or a cure, but the bulk of the work is going to land on your shoulders. It is up to you to decide how much, how far, and how hard you will run for the sake of your child. There are countless stories of diagnoses turned over by people who stood in faith and worked with their physicians. I invite you to team up with me in the fight for your child. As long as there is life, there is hope. I am here to serve you."
I understand that as a doctor you must keep your professional distance, and I imagine that is very hard. I know that what I am asking for may not be entirely possible. If that is the case, I just want you to encourage me to hope, because if I don't- who will?