Dream Mom, the subject of today’s interview, describes herself as a midwest mom sharing and reflecting on the love for her Dear Son and the challenges of everyday life with a severly disabled teenager. Make sure after reading her interview, that you visit her blog, Dream Mom! I promise you will not be disappointed!
Tell me a little about yourself and your family.
I am a divorced single mother and live in the suburbs with Dear Son. I currently own my own business and work part time while caring for Dear Son.
Tell me more about your child’s disabilities. Did you know when he was born that he had disabilities? If not, how did you feel when you discovered it?
I had a totally normal pregnancy with Dear Son so we had no indication of any issues. When Dear Son was born, he turned blue within the first twenty four hours and he had seizures. He went through a variety of tests and was sent home after a week with a clean bill of health.
Over the next two months, he did odd things and at the ten week mark was admitted to Big Academic Medical Center for seizures. He was diagnosed with Infantile Spasms, a type of seizure, was put on ACTH therapy and sent home with steroid injections. From there, our lives where never the same.
In 2002, the ARX gene was discovered. (ARX is one of many causes of Infantile Spasms.) Dear Son was the first person in the world to be diagnosed with this particular gene pattern
How have your child’s disabilities affected you as a person and a mother?
As a person, my son’s disabilities opened my eyes to the challenges people face every day. It seems odd to me that remote controls are standard for televisions and yet they are not standard for some pieces of medical equipment.
The other thing that amazes me is that we don’t have bathrooms for the severely handicapped to use. It wouldn’t be a lot work to put a table/bench of sorts in a washroom to change their briefs/diapers. As they get older, it’s hard to go anywhere when you don’t have access to a bathroom. That isn’t right.
As a mother, all of the things I worried about when I had a child with disabilities never came to fruition. Instead, I have a beautiful, happy and amazingly mature son. I couldn’t be any more blessed.
If you could have one thing, what would it be?
I think the one thing I would love is to have twenty four hours where Dear Son could speak. We talk about that sometimes. I might say how great it would be if he could talk; I’d want to hear about school, about life and ask him all of the questions I am dying to know. When I mention that to him, his eyes light up and he gets right into the fantasy with me. When I am done talking about it, he will usually give me a kiss, which is a lick on my hand. That’s how I know I am saying things he is thinking about.
As for speaking, just hearing about the world from “his” perspective, would be awesome. I’d give up fifty years of my life (assuming I have that many left!) to hear him talk for just one day. Certainly, I’d want more than one day, but having one day where he’s totally normal would be great.
Any regrets?
I wish I had more children. Because we didn’t know what caused Dear Son’s disabilities, I was reluctant to have more children. I guess I viewed it as a bit irresponsible to create children when you don’t know what the issues were.
Today, I think Dear Son would love having a brother or sister. I think it would make his days more interesting.
What do I miss?
I miss Dear Son as a little boy. He was the cutest little thing.
What are the hardest challenges you faced as a mother of a child with disabilities?
I think the biggest challenge is not being able to work full time. The fact that we do not have daycare in this country for children with disabilities is unacceptable. We need to have daycare centers for “all” children, not just normal children
In terms of Dear Son, the thing I miss the most is cooking for him. It was a hard transition moving him to a feeding tube. He misses eating and I miss cooking for him. I think the worst part is never knowing if he is hungry.
Is there anything else you’d like to share?
Just that, having Dear Son was still the best day of my life. I am really lucky and really blessed to have a child like him. But I think by now, everyone who reads my blog, knows that!
Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.