When you are a parent of disability you waffle between shameless optimism of what your child can or could do, and utter despair for what they are unable to do. And at some point in your journey, you hit the brick wall of reality.
I have definitely hit that brick wall of reality and am finding it painful. Sophia is eleven and in grade six. There are moments when she seems like a ‘typical’ eleven year old girl. Sophia knows all the words to any Selena Gomez song, she wants to wear ‘big’ girl clothes, paint her toe nails. She wears deodorant, has her first bra and definitely has eleven year old girl emotional break downs!
Sophia loves to help out in the kitchen and goes shopping with me, following the grocery list with determination. We have real conversations about what kind of vegetables we need for dinner and what apples are our favourite. She can choose between cheddar or mozzarella, cold ham or turkey. Sophia loves to read the ingredients in the food we pick out and fervently announces to anyone walking by the percentage of sugar indicated on the side package.
In these moments walking up and down the aisles, I have shameless optimism that my daughter will grow up and develop into an independent, self reliant woman. That she will have completed her education, have a good job, a social life, and share her home with close friends/roommates. That she will manage her own bank account and perhaps, fall in love, have children of her own.
Slam! There is that damn brick wall. OUCH! It hurts…
Sophia is estimated to be about the developmental age of a four year old. I would say it rings true in that her favorite show is still Barney, and she laughs uncontrollably watching Sesame Street on her iPad. We still have to cut up her food, bath her, and there are moments like tonight at dinner, when she really does not understand the context of the conversation. This typically leads to her brothers laughing and Sophia sitting there with indignation, thinking she knows the answer and is right; a blend of the eleven year old girl and a developmentally four year old child.
Sophia is still so very much infantile. Her emotional maturity is that of a two year old and she still requires so much assistance, twenty four hours a day. This is an aside to the comprehensive medical care she requires; the injections every three hours, the round the clock medications, the skin care, the assistance she needs physically to complete so many basic tasks like bathing, dressing, going to bed, even needing assistance walking up and down stairs. *Note, Sophia ended up in emergency the other day when she fell down a flight of stairs and suffered a major concussion when in the care of someone else who didn’t hold her hand.
The worry, the angst, the fear of her every day never mind her future, hangs over my head like an anvil.
No one can look into your eyes and assure you everything is going to be ok, be alright. Because the reality, that friggen brick wall is right there in front of you. You try to blast your way through, ram it over and over, try to climb it even. And time and time again, you are met with the cold hard truth that when you have a child, are a parent of disability, that there just may be a line in the sand…that the wall isn’t going to move. It is there to stay.
That isn’t to say you can’t make a wonderful garden around it, that you can’t create beautiful graffiti on it’s cold grey. That others can’t come to the wall and sit and enjoy it with you, your child. Because you can…and for your own emotional well being, and for the quality of life of your child, you need to.
Helen Keller said, "I seldom think of my limitations, and they never make me sad. Perhaps there is a touch of yearning at times; but it is vague, like the breeze among flowers."
It is something I have yet to learn as a parent of disability; to only yearn for what Sophia can do, will do. And not think of limitations, not feel sad. For me, that breeze comes in wind storms, still.
Yet, at the end of the day when I am getting Sophia ready for bed and she tells me exactly how many days are left before a special occasion, or in the morning when she proclaims as usual, that it is going to be a sunny day because she can see that one tiny crack in the clouds…that storm settles into a breeze and I know I am among a flower. It feeds my shameless optimism.