Last updated on January 12th, 2024 at 01:35 pm
I’ve been hit hard with the dream interruption blues. It completely threw me off my game. Have you ever been kept from your dream journey by a mountain of obstacles or a stack of distractions?
Meet my favorite distraction: Jackson. He is my oldest, severely disabled adult son.
He is deaf, 5’4, 200 lbs, and a lower left leg amputee with an unsteady equilibrium, compliments of an outgrown prosthesis. He has extensive brain damage and suffers a severe seizure disorder due to the ravages of meningitis he contracted in 1982.
Jackson lives in an independent living facility, and he requires constant attention 24/7.
I was really looking forward to having him home for a week-long visit–he usually comes home for the weekend. It didn’t take long before all the painful memories rushed back in, leaving my soul cloaked with grief once again. I was racked with uncontrollable tears, and I felt my already scarred heart take another hit.
But I must go on for Jackson’s sake and not let him in on the personal hell that has invaded my very being.
I must focus solely on him –
- To fulfill his needs.
- Anticipate his wants.
- Keep an ear perked for seizures and other dangerous situations Jackson has a knack for getting into.
There is no time, energy, or desire for my screenwriting dream while he’s here. Ideas and the flow of creativity quickly evaporate into thin air. My script work is pushed aside until Jackson returns to his facility, and I’ve regained my emotional and physical strength.
Each time, it gets harder and harder to recover. A little bit of me dies every time I have to say goodbye to him. I never know if this will be the last time I see his innocent face. I try to conduct a normal life. But there is nothing normal about it. I am the mother of a son who survived a deadly disease and has had to sit by and helplessly watch the aftermath.
It’s a traumatic thing to give birth to a disabled child.
It’s inconceivable to have a perfectly healthy child (his pediatrician proclaimed Jackson was the smartest three-year-old he had ever seen) become stricken with a disease that would eventually permanently disable him. I’ve witnessed the “death” of my son, the one I had for three years. His “rebirth” left him saddled with a whole host of disabilities.
Thank God, his spirit was left intact. And that is what I dearly hold onto. It keeps me from completely falling apart. His infectious smile and twinkly eyes let me know that this is his chosen path, and I am a part of it.
Despite it all, we laugh a lot. Laughter has been my life preserver. It keeps me afloat. It masks the never-ending pain.
There will be times in the future when I’ll have to put my screenwriting dream on the shelf. I am Jackson’s mother and will do everything I can to fill his life with love and laughter for as long as we have him here on earth. I’m going to give myself time to breathe and heal.
My script will be waiting for me right where I left it.
Toni Schram is co-president at Club B, a Northern California women’s club raising funds for various charities and having a great time while doing it. Her dream is to get her screenplay made into a movie.
If you are a parent of a developmentally disabled child in need of support, Parents Helping Parents offers many disability support groups for families. They are intended to help people find others who share their life experiences. Each support group is a place to get information from others, reduce feelings of isolation, get and give support, and meet people who understand you and your family. PHP’s mission is to help people build a community of support and reduce feelings of isolation. www.php.com/support-groups
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