A Reality Show About My Life as a Special Needs Parent Would Look Like This
There are many shows on television now featuring all sorts of families. I have no desire to be one of them. But, sometimes I wonder what my life with my husband and two kids would look like on TV. It would probably be something like this:
There would be moments of education for the audience:
People would learn about Down syndrome and my daughter’s heart conditions. As I use her nebulizer, bi-pap, and vest airway clearance machine I can explain why Jaycee uses each one of them for her asthma, obstructive sleep apnea and lung cyst. Her “talker” communication device would be explained as well as childhood apraxia of speech.
There would be moments that would make the audience go “aw”:
Like the time my son Elijah declared one day, when I suggested he would live with a wife when he’s older, “I don’t want to live with my wife. I want to live with my sister!” Or when Jaycee squats behind the kittens and picks them up so proudly with a huge smile on her face. Better yet, an “aw” worthy moment would surely be when Elijah crawls up on his sister’s lap when they watch movies together and she kisses the top of his head periodically.
There would be intense moments — those moments where something awful may or may not happen but a commercial break leaves you wondering:
People might gasp as Jaycee breaks free from my hand and runs across a parking lot. Cameras would catch my split-second decision of staying with my son or running after Jaycee. Then there’s Jaycee’s yearly cardiology tests where we learn if Jaycee’s valve leaks and pulmonary pressures have changed at all. I know that moment always scares me!
Of course, there would be times when the audience would judge my parenting:
When Jaycee watches “Barney” on television while watching “Kipper” on her Kindle, I’m sure there would be Facebook comments about me. Other comments might come from me caving into Jaycee’s requests for seconds at meals. For sure, I would be judged as I try to unsuccessfully respond to one of Jaycee’s drop-and-flops (when Jaycee sits down and refuses to move). Obviously, I don’t always know how to stop her behaviors.
And then, there would be times for the audience to get to know me personally:
If the cameras followed me to work as a pediatric speech-language pathologist, people would see the irony of someone like me having a child who can barely speak. They would also see how my home life and work life intersect, making some days mentally exhausting for me. People would get tired of hearing, “I’m tired,” come out of my mouth since I say it pretty much all day long. They would see me waking up early so I can read my Bible before the kids get up. They would see me pray in the car and ask God for help and peace multiple times a day. Hopefully, they would get a sense of who I am–That even though raising Jaycee is at times challenging, I am a proud and happy mom to two children I love dearly.
And this reality is just fine with me.
A version of this post originally appeared on A Special Purposed Life.
The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.