So, when Roa was first diagnosed with Cerebral Palsy, I bought the book, The Elephant in the Playroom by Denise Brodey. I read a few of the stories, touching tales of families and how they deal with a variety of disabilities, and put the book on the shelf, for years.
I'm not gonna lie. It is a tough read for a mom new to CP Land. These parents describe exactly what we go through each and every day- hope, worry, sadness, fear, shame, guilt, hurt, anger....
This weekend when I chose to take a little alone time in the basement after bedtime and watch a Netflix movie, I chose Rabbit Hole, starring Nicole Kidman. It is the story of a couple whose 4-year-old son is tragically killed and how they deal with the aftermath. (Not an uplifting flick to choose, but it just was one of those nights.)
Anyway,... the Grandmother of the deceased boy had a statement that totally hit home. Made me cry and breathe deep from my nest on the couch. When Nicole's character asked if the grief goes away, grandma said, No.
The weight of it changes with time. It gets lighter and easier to carry. It is like a brick you carry around in your pocket all the time. Somedays it is lighter. Somedays you really notice the weight. But it never goes away.
Wow, that was a phrase of words taken right from my heart. So very true. When it comes to dealing with grief.
Some of you may say, but Jennifer, the kid in the movie died! You have Roa with you on earth.
But, you see, we, special needs mom and pops grieve everyday for the boy he could have been. We keep up the good fight and work work work to make things easier for him, battle away through doctors and therapies in hopes that his future will be a little more bright... yet inside,
we are crying, stomping around, angry, pulling our hair out with sorrow that OUR child is not TYPICAL. OUR child is the proverbal elephant in the playroom that others look at with curiosity, move around as if he has an enormous bubble surrounding him and his special equipment, and ask questions about him.... over and over... the QUESTIONING! UGH!
That is the brick in the pocket. Mine is marked CP Land.
Some days, I am comforted by the extra load. God put me in special education for a reason. It was my destiny. I will be the best mom I can be and plan and budget, and follow through with all the activities recommended by therapists and doctors. I will do do do do more more more..
Roa will teach people, bring tolerance and acceptance to lives that he touches.
The brick needs me to be strong to carry it around and think optimistic thoughts. Be the BRICK, BE the brick!
Some days the brick, pisses me off! God, the load of it! And it won't LEAVE my pocket. I try and get away, with a movie, a long walk, a glass of wine, but it is still there in my pocket. The fears, the questions, will he ever move independently?, will he ever do more than laugh, babble, yell, and cry? will he have friends? will he live somewhere besides with Mom and Pop? will he ever be able to tell us why sometimes he SCREAMS in the night and breaks our hearts for hours at a time?
The brick should be thrown through the CP Land Town Hall window where I can then promptly run away from it all and my Roa could be the TYPICAL. Not the ELEPHANT.
I started reading that book again yesterday. I relate to the social awkardness, the urban hermit attitude of some of the parents. I relate to the marital issues that arise when you are so focused on the disability that you forget who you are as a couple. I relate to the relationships of family and friends that change and sometimes end over time. I relate to the sadness of watching a sibling grow and change while your other Pride and Joy remains a baby of sorts.
It is a tough read. I'm not gonna lie. But it is a little easier when, as you read, you reach in and touch that brick in your pocket.
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