By Liz Marfia-Ash, Parent & Founder of GRIN2B Foundation
People often ask us if my daughter, Lucy, is going to be able to do certain things. We always appreciate when people ask questions because sometimes I get the feeling people are scared to talk to us. But we don’t want anyone to feel bad or sad when our answer is generally some version of, “maybe, but we don’t know.” The truth is, no one can really tell us for sure when or if she will be able to do certain things. I can attempt to guess based on some of the families I’ve connected with online who have older children, but my guesses are not by any means set in stone. And while there are certainly days where we’re frustrated or worried or sad about what we don’t know or what we’re trying to help her achieve; most of the time, we are pretty accepting of the unknowns. They are our “new normal.”
But we didn’t always feel this way. We were pretty apprehensive about all those unknowns after our daughter received her genetic diagnosis (a mutation on her GRIN2B gene) just over two years ago.
Since then, I have spent A LOT of time reading countless blogs and websites and articles and books and meeting wonderful people with differing life experiences, and all of those interactions have led me to some pretty life-altering realizations.
If Lucy is someday able to mainstream into a regular education classroom, great. We’ll love her and be super proud of all she’s accomplished.
If she stays in a special education setting for the duration of her school years, great. We’ll take comfort that she’s in the safest possible environment, and we’ll love her and be super proud of all she’s accomplished.
If we get to hear her voice one day, we’ll cry and rejoice and delight in whatever conversations she’s capable of having.
If she remains non-verbal, that won’t change anything. We’ll continue pushing forward with sign language and working on her communication device. Communication comes in many forms. The voice is just one of them. And Lucy has already proven, based on actions, that she has strong opinions and wants to communicate with us. It is our job to provide her with as many forms of alternative communication as we can.
If Lucy is able to live on her own one day or live amongst a community of adults with developmental differences, great. We’ll love her and be super proud that she’s spreading her wings.
If she lives with us into adulthood, also great. We’ll love her and we’ll be super excited to have a good buddy to keep us company in our old age.
My daughter was not put on this earth to make us feel sad or grieve what could have been. She is not here for us to “fix” or conform to some standards of “norm.” “Normal is a setting on a washing machine.” – Christopher Barzak
She was also not put on this earth to inspire us. Lucy has inspired us and those around her to believe in endless possibilities, but that is not her sole purpose.
I believe there must be a happy medium where we will do what we can to give her the tools and encouragement to be whatever she’s meant to be AND also teach society that disability is beautiful and not a mistake and has been a normal part of human existence since the beginning of time.
I don’t know exactly what her future looks like, but I do know this: I will NOT let my daughter’s worth be defined by society’s measure of her intelligence. Her success will not be defined by whether or not she can “catch up.”
My Lucy will be no more or no less than what she is meant to be. A delightfully curious, giggly girl, a daughter, a sister, a cousin, a niece, a granddaughter, a friend. A human being who’s “practically perfect in every way.”
CAVEAT
Though the tone of this piece is one of acceptance and positivity, it is not meant to assume that our life is now easy-breezy and carefree (but really, whose life is?). Because Lucy’s disability is somewhat invisible, we regularly deal with tricky situations that most people may not be aware of. Since my daughter cannot currently give permission for me to write about her, I feel an immense responsibility to portray her in a respectful way and keep some of the harder stuff private. In all honesty, there will always be things that will be challenging for our family. As Lucy gets older, and the differences become more obvious, I fear the challenges will increase. My hope is we will always try to combat each obstacle with as much grace and positivity as we can muster.