This week’s People magazine featured Rosemary Kennedy on the cover as well as a detailed story of her life. The article was based on the books Rosemary: The Hidden Kennedy Daughter by Kate Clifford Larson and The Missing Kennedy by Elizabeth Koehler-Pentacoff. One huge revelation regarded her 1918 birth, stating that the delivery nurse, trying to stall delivery, held Rosemary’s head and forced it back into her mother’s birth canal. For two hours. The article makes reference to Rosemary’s later intellectual disabilities and her family’s embarrassment at the time, ultimately leading to a fully disabling lobotomy. I don’t judge or blame the Kennedys—judgement is a cruel trick used to manipulate the past.
The article reminded me of one of my favorite books, Kim Edwards’ The Memory Keeper’s Daughter. It takes place in 1964. The mother’s husband and his nurse assist during a home birth to twins. The first child is a healthy boy; the second is a baby girl with Down Syndrome. The father’s sister died at age 12 after a life in an institution, so to spare his wife, he asks the nurse to put the baby girl in an institution and to tell his wife that the other baby died. The nurse was smitten by the precious baby girl and instead moved away and secretly raised her.
After I finished reading the Rosemary Kennedy article, I said a prayer of gratitude. Life with a disabled child is measurably more difficult, but as I’ve said before, if Caleb had to be born with so many challenges, I’m delighted that I’m his mama. I’m so grateful that today we aren’t pressured to put our children in an institution, as this used to be the heavy-handed instruction posed as a question to parents in hospitals.
What speared my heart about Rosemary Kennedy was reading about her intellectual disability. She was slower than her siblings and her IQ was below what is considered to be normal intelligence, but, for a time, she tried to keep up with them. She was able to do math problems, write and keep a diary. In 1941 at age 23, a lobotomy was performed when Rosemary displayed aggression and mood swings. It left her mentally and physically incapacitated. She became a prisoner in her own body and mind. Today, with proper treatment, medication and therapies, Rosemary may have been able to lead a full, independent life.
I write often of the pain, isolation and stress of raising a child with significant special needs. I will never sugarcoat it or succumb to the often-misquoted platitude of “God never gives you more than you can handle.” God has given me inordinate strength so many times in Caleb’s life and without it I don’t know how I could walk this walk. I am profoundly grateful that even though Caleb is often stared at in public, we don’t also have to suffer the societal taboo and shame that the Kennedy family and others like them faced.
At the same time, so much of this life, and my friend’s lives, are more than we can handle. I understand why Rosemary was institutionalized. I understand how her parents made that decision. I am gratefully awed that by the time Caleb was born in 1996 I was able to take him home with me with no questions asked or even insinuated.
From the time he was a toddler, Caleb has received specialized therapies that have brought him to his highest functioning level, which is still below that of Rosemary Kennedy’s. It’s almost as if entire professions have popped up since babies with special needs have been sent to live at home. By extension, there are so many learning centers and accommodations for children with learning disabilities who can function in typical education classes. So many affected people have gone on to live much fuller lives.
Even with all of these supports, there are still children who are sent to live in group homes at a very young age. I recently came in contact with a woman who was working at a special needs camp. In her group was a 19 year-old man with 22Q Deletion Syndrome, just like Caleb. His family was no longer able to care for him so he was living in a group home. I know this happens. I know there are good places. I know there are viable reasons why families can no longer care for their children. My heart aches for all of them.
For now, and for as long as I am able, I am profoundly grateful that Caleb lives with me and attends a self-contained special education class with wonderful teachers at a great public high school. He loves going to school. He loves riding the bus. His room is decorated with classic car signs, Disney posters and awesome bed linens with trains on them. He loves the freedom and serenity that comes from having his own special place. He is truly the happiest person I know.
For decades, the media has focused on the Kennedy family’s shame about Rosemary. It was alluded to in the article and in so many articles and television shows about her life. I would like to help refocus Rosemary’s story into an impactful one that helped so many future babies, children and adults. I believe her story created great empathy and caused so many people to reflect on and question how the disabled are treated. She certainly inspired her sister Eunice, who wrote an article about her for The Saturday Evening Post. Eunice welcomed Rosemary to her home for visits. She went on to found the Special Olympics, which has brought incalculable joy to millions, both athletes and the families and friends who cheer for them.
I wish Rosemary could be here to see all the good that came from the tragic horror of her life. I like to think that she can.