Over six years ago when I received my daughter’s diagnosis, I had no idea how that moment would change my life forever. My newborn baby girl was very sick and she had this rare genetic disorder that would most likely not allow her to live passed her first two years of life. And if we were lucky enough that she would survive she would not walk, talk or have the ability to have a productive life.
I focused on her diagnosis for quite some time until I began to realize it was not just her diagnosis, it was our diagnosis. This diagnosis took hold of my family’s life and slowly begin to break us down, it led to fear and down a road of little or no expectations. And it did because I allowed it to.
I am in no way an expert of being the parent of a child with different abilities, I continue to learn each and every day and one of the things I have learned is that just as our children are all different in their own ways so are we in the ways that we cope with our realities. My way of coping was acceptance and letting go.
When I focused on a diagnosis it hindered my expectations of my child, it limited her in my mind and that was unjust. Yes, my daughter has a rare genetic disorder, a terminal illness and she is developing skills at a different pace than most of the world but that is OK. I may never understand why she needs to spin every plastic bowl in my house constantly or why she needs to chew my furniture or why she pinches or bites when she is excited or overwhelmed. But I know that she is happy, that she is learning and that she is flourishing in her own way and for that I am grateful.
Today I find myself surprised at the way some are astonished with my daughters progress, I find myself saying to people “of course she understands and that she is not a baby anymore”. I assume it is because I see her for who she is, a six-year-old little girl, my little girl who is growing and learning against the odds.
People constantly ask me how I can function with the devastating truth that my child has a terminal illness or that she is not typical. The truth is that it is not easy but I don’t think about it. I live for today and tackle the obstacles we are faced as they arise. Tomorrow is never promised to anyone, despite whether a person is sick or healthy. If I allow fear and heartache to debilitate me than I am not only giving up my life but I am affecting the lives of my children and everyone who surrounds me. So I choose to just live with no strings attached to weigh me down.
This past Saturday I allowed Sophie to play outside on her trampoline on the patio for a little while, when dinner was ready I called her in. She stood there and stared at me for a moment, pondering what I was saying and what she wanted to do. She then walked up to me, closed the french door in my face and climbed back into her trampoline. She had a big smile on her face then waved “bye” at me. These are the moments I live for, the moments that she shines through. The moments that validate that letting go of the pain and labels enables me to fully understand and enjoy the value of her life and our journey.
Today Sophie can walk, she does not speak other than the occasional mama and the attempts at vocalization but she can communicate. Speaking is not the only way to have a voice and while I once believed that to be the only way I would ever understand my child I see now that those were the limits I was setting for her and us. Sophie does have a productive life and her life is essential to all of us who love her.
I had not realized how much like me she truly is, strong-willed and defiant. She is a fighter, she is kind and loving. She has taught me more in her six years of life than all the years I had lived before she blessed us with her arrival.
We have our diagnosis, we were given our labels. But I have chosen to move past it, I refuse to live within the confines of labels and little expectations. The world is a rainbow, I will embrace the different colors around me and let them shine, in the end life is what we make of it.