29 years ago I gave birth to my last child. A daughter named Deborah Ann(Dac). For all intents and purposes, she was normal with no warning signs that she was any different from any other baby except for a couple of white spots on her skin that were diagnosed as birthmarks. Six months later she had her first seizure and the Dr could not get them under control despite trying multiple medications. We discovered Dac had Tuberous Sclerosis (a benign tumor disease) and our lives changed forever.
Yesterday i took Dac to UNC for her CBD appt. We were sitting in the waiting room. Dac was holding a magazine upside down so she could flip the pages. She was baby talking. I always parrot her speech back to her so the room was soon filled with
“Debba whoo and mmm hmm mommy”
I never “ever” take the spoken word for granted. I also never think where I am at when i talk to Dac. It feels as normal as breathing. The same way i feel about being the Mother to a daughter who is severely disabled. She was my daughter before she was this disease and i love her regardless of what she can or can not do.
The receptionist broke through our little talking session and remarked how sweet we were. She went on to tell me her 26-year-old son was on the autism spectrum but high functioning. I listened with interest as she went on to tell me that while he still lives at home he is in grad school, drives and is largely independent. All the while i was bending to retrieve Dac’s magazine as she sat in her wheelchair.
I could have been bitter as i listened to her but there is something that is different when you speak to another parent who knows the struggles of disability parenting. This woman’s eyes dimmed as she told me how her son started off life by losing his speech and retreating into himself. I heard a tremor in her voice as she related some of his challenges along the way. Then, like someone who was thrilled to share the happy news, she told me about his successes.
All i could think was “Isn’t God good. Yes!! Someone beat the odds!”
Dac is also beating incredible odds. Yes, her brain will always be severely damaged but she has gone through 5 brain surgeries and heart failure to come out on the other side. She is humorous, vibrant at times challenging and my best friend.
I looked at her sitting there. Praying the CBD works for her seizures. Thinking of the toll her disease has taken on her and so many like her.
We never know what our journey in life will be. Nor should we ever presume that people have it better or easier than we do because everyone knows sorrow and struggles. We all also know JOY.
So, as i rose to take Dac into the exam room, i leaned down and plopped a kiss on her cheek to which she replied “Whoo.”
Shared pride is an amazing thing.
The woman and i exchanged knowing smiles.
