Hi! I’m Michelle, the mother of two kids, one of whom has Bohring-Opitz Syndrome and one of whom is a teenager.
Campbell, my little girl, was born with a bilateral cleft lip/palate. By age two, she was diagnosed with cerebral palsy, global development delay, and hyptonia (low muscle tone). She was also having seizures. At age 6, she coded twice during cardiac arrest from a prolonged seizure, was resuscitated, and was put on life support in what was basically a coma. As a result, she had hypoxic brain damage due to the lack of oxygen during CPR.
She did wake up, but her alertness and cognition fluctuates day to day. To the list of maladies, you can add a tracheotomy, sleep apnea, spasticity, osteoporosis, a feeding tube, and a lot of other gastrointestinal issues. We’ve been in and out of the hospital so much that they invite me to the Christmas party. In October of 2016, she was diagnosed with a rare genetic disorder called Bohring-Opitz Syndrome. At the time, she was one of approximately 80 known cases in the world but that number is constantly changing due to advances in genetic testing.
At some point during that horrible day back in 2012 while I sat watching the ventilator breathe for my daughter as she lay on life support, I found myself thinking about June Cleaver. Like everyone in my generation, I grew up watching the old Leave It To Beaver show after school. It showed the perfect 1950’s nuclear family – two kids, a husband and wife, in a middle-class suburb. June was the perfect wife. The perfect mother.
And as I sat there next to my daughter, I couldn’t help but wonder how June would handle all of this.
Over the last years, “What would June do?” has been a bit of a mantra for me when things get rough. Partially in jest, but not totally. Looking at how much damage has been done to my little girl. She has suffered more in the last four years than she had in her first six. The increased care she needs has been an adjustment for our family. Neither Campbell nor I sleep much. So absolutely I wonder whether June would cope better than I am.
But to be clear, I didn’t start this blog to complain. Quite the opposite, I started it out of optimism. I fight every day for Campbell. I wake up every day and find ways to make her smile and happy and comfortable. And I’m blessed because my teenage son, Matthew, wakes up every day and tries to do the same for me. Well, most days.
We can all use a little company on our journeys. I know my road won’t take me to the perfect family of the Cleavers, but that doesn’t mean I’ll stop chasing it. I hope you’ll travel along with me, at least for a little bit. Along the way, I’ll tell you the good and the bad. The laughter and the tears, as they say. The things I’ve learned, and the things I haven’t. I’ll share my stories, and I hope you’ll share yours. And maybe together, the road won’t feel so lonely.
The boring stuff about me:
I’m a Kentucky girl, born and raised. I have a degree in occupational therapy, which gives me a unique perspective on caring for a child with complex medical needs. I have also worked as a Family Services Coordinator at Visually Impaired Preschool Services in Lexington. I’ve served as a parent representative for the Interagency Coordinating Council for Kentucky’s Early Intervention System and have been an advocate not only for my daughter but other children with disabilities. Shortly after Campbell’s diagnosis with BOS, I took a volunteer position as a Board Member for the Bohring-Optiz Syndrome Foundation.
Matthew is a teenager who enjoys video games, acting (he had a small role in an independent horror movie), and archery. His life has been changed more than anyone else’s during all of this, but somehow he has retained the most hilarious sense of humor. Which has helped more than he knows.