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The beginning

Welcome family and friends of Gay Waldvogel. In this post we want to tell about how Gay came into this world. After being carried full term with no indication of complications, she came in fighting to breathe, struggling to stay alive. The birthing team had given her Mom drugs to delay the birthing process because her doctor was tired and sick with cancer. Gay was unable to breathe and suffered brain damage as the result of that decision and her Mom's body was also damaged when they tried to forcibly remove Gay at the time the doctor was ready.

Cerebral palsy, which occurs in two to three out of 1,000 live births, has multiple etiologies resulting in brain injury that affects movement, posture, and balance. The movement disorders associated with cerebral palsy are categorized as spasticity, dyskinesia, ataxia, or mixed/other. Spasticity is the most common movement disorder, occurring in 80% of children with cerebral palsy. Patients with cerebral palsy often also experience problems unrelated to movement that need to be managed into adulthood, including cognitive dysfunction, seizures, pressure ulcers, osteoporosis, behavioral or emotional problems, and speech and hearing impairment. (Am Fam Physician. 2020;101(4):213–220. Copyright © 2020 American Academy of Family Physicians."

Gay's parents learned the full story of Gay's birth when she was 18 years old. When Gay was first born in 1966, all her parents knew was that Gay didn't seem to be developing according to what they had heard, learned, and observed about child development. Gay was irritable, not strong, wouldn't sleep, and couldn't be comforted. She didn't take a bottle easily and the doctors were unable to advise Gay's parents as to what was going on with their child. Gay also developed a fear of men as the result of visiting so many doctors.

It wasn't until Gay's grandfather, Richard Kaminska (the first Director of Special Education in Monroe county) made a connection between Gay's parents, Claire and Beth Waldvogel and the doctors at the University of Michigan Hospital, that her parents began to understand the challenges that Gay would face physically and mentally.

Even after that introduction, Gay saw many doctors until her Mom insisted on establishing one primary doctor. When Gay was 2 1/2 years old she met Dr. Mason Barr and began meeting with him every 3 weeks. Those first meetings with Dr. Barr were the beginning of what would be a fifty year positive relationship with the amazing team associated with University of Michigan hospitals.

In our next post, we will write about the diagnosis of Gay's condition and the choices she made about how she wanted to be in the world, in consultation with her doctors, and with the support of her family.


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