One mother’s struggle -- and the sad inevitable
Stacy, my daughter, is 15. Or 6 months, depending on the evaluation.
She cannot walk or talk but, like other babies, revels in rolling over, sitting up, reaching for shiny, noisy toys and giggling with the music and colors on TV. Stacy’s body is strong and healthy, but her brain never recovered from the undiagnosed blood clot that destroyed a large part of my placenta during pregnancy and cut off critical oxygen and nutrition to the developing neural cells.
Only 3 pounds, 13 ounces, when she was born, Stacy was soon diagnosed with developmental delay, dashing our hopes that she would someday catch up with her peers. Like Ashley, the young girl at the center of controversy for her parents’ decision to medically suppress her physical growth, Stacy was not expected to mature neurologically or mentally beyond infancy. She too would probably become a “pillow angel,” the gentle term coined by Ashley’s parents for a child whose limited mobility restricted her to a cozy cushion.
My husband and I, though devastated by Stacy’s condition, devoted ourselves to making her life as comfortable and full as possible. By the time she was 4, we had been blessed with two “normal” sons and faced the challenge of raising our blended family -- soccer games and preschool for the boys, physical therapy and special-education services for Stacy.
Home life was actively inclusive; Stacy, not yet able to sit up, had her eyes glued to the cartoons her brothers watched by her side. Weekend outings and summer vacations saw our entire family piled into our minivan, with Stacy’s umbrella-stroller wheelchair folded up and ready for her in the hatch. Visits to yiayia and pappou, the kids’ grandma and grandpa in Greece, were facilitated by helpful airlines and not-always-as-helpful airport personnel.
My husband and I were determined that Stacy would share fully in our family life. Stacy’s puberty came later than expected. Small from birth, she spurted only to a height of 4 feet 10 and a relatively light 65 pounds by the time she was 14. Feeding was now easier -- Stacy had, thanks to the efforts of her occupational therapists, learned to drink from a cup I held and eat soft foods from a spoon I placed in her tongue.
And her personality evolved from an infant crying to that of a smiling, happy baby girl who -- hooray! -- slept through the night after she reached age 7. Stacy’s smiles and giggles when she heard my voice were as heartwarming as the “I love you’s” I had dreamed of hearing before she was born. Over the years, Stacy taught all of us the true meaning of unconditional love.
Unfortunately, the passing of the years also has brought some unexpected challenges. As my husband and I unwillingly lose the strength and energy of youth, physically caring for Stacy has become a more difficult mission. Whereas lifting our daughter into her car seat for a Sunday excursion was once a routine task, hoisting her now more-mature body for even just a few steps is injurious to my 5-foot-3 frame. Simple chores such as bathing, changing diapers or even transferring Stacy from bed to wheelchair are parceled carefully between me and my husband, depending on whose neck and back are less strained on a particular day.
The end result: for Stacy, significantly less mobility and adventure, and more time spent sitting farther from us in her playroom; for us, fewer outside activities for the boys, and musculoskeletal injury and chronic pain for Mom and Dad.
Unlike Ashley’s parents, I did not choose to ask Stacy’s pediatrician for hormone treatments that would prevent periods, much less treatments to slow or stop her growth. I had struggled with the ethical questions that had been only theoretical for me before Stacy was born: As a mother of a child with severe disabilities, could I in good conscience ask that my daughter be medically sterilized without her consent? The only answer I could give to myself was “no.”
The story of Ashley and her family has led me to reconsider the ethical foundation of my decision.
Ashley’s parents have chosen to remove her reproductive organs and suppress her growth and physical maturation with hormone therapy in the hopes of allowing Ashley to maintain the flexibility and relative mobility of her childhood lifestyle with her loving family. Their decision may mean that Ashley and her parents will not have to face the prospect that looms for us -- that sooner, rather than later, there may come a time when we will no longer be able to physically care for Stacy. When our vigor fades, we sadly will need to consider placement for her in a care facility or host home.
For now, I grunt loudly for the few seconds it takes me to lift Stacy from the soft carpet to the bed. I feel my back muscles screaming in protest and the stabs of pain in the muscles of my neck and shoulder. I need an analgesic, and, on cue, Stacy looks at me with a big smile and makes a soft coo. My heart bursts with devotion -- and breaks with sorrow. How can I stay strong for another 70 years so that I can be close by her side -- to protect her and give her love? And who will do that once I am gone?
I cannot criticize Ashley’s parents for their choice. I even wish the option had been offered to us before Stacy crossed the line into maturity. Despite my respect for the rights and dignity of individuals with disabilities, I might have been able to convince myself that I could be acting generously on Stacy’s (if not our) behalf by keeping her small.
But in the end, I would not choose Ashley’s path for my daughter, because I know that ultimately I won’t be able to escape the inevitable, the greatest source of my dread -- the end of my duty shift by Stacy’s side when I am called “home.”
Dr. Yolanda “Linda” Reid Chassiakos is director of the Klotz Student Health Center at Cal State Northridge and a clinical assistant professor of pediatrics at UCLA.
