Unlike my first pregnancy, my second seemed perfect. No months of daylong nausea, no enormous, swollen ankles, and no threatening high blood pressure. But most of all, no fear of what was to come. This time I knew, and I was prepared.
Or so I thought.
Claire slid into this world so peacefully, a purple and pink prune-faced angel, we were quite unprepared for what came with her: an unnaturally long, and skinny umbilical cord containing only two vessels—one artery and one vein, instead of the normal three. Due to its excessive length, my little prune had managed to swim around and tie her cord into a complete knot.
My doctor was stunned that the cord had not tightened and cut off her blood supply completely. “This baby is going to be special,” he assured us with a smile. “Wait and see.”
A two-vessel cord can be associated with problems in a baby’s kidneys and heart, but my wee one was lucky in that regard. As far as we could tell, Clare’s troubles were more to do with her arriving six weeks early, and with the restriction of blood flow because of the knot in her cord.
Despite poorly formed tear ducts, lack of toenails, the tiny nubs of her fingernails, and the one-inch separation in the center of her abdominal muscles, Claire was perfect. Even the monkey-like hair covering her back, shoulders, and ears was beautiful to us. When she gained weight and lost that prune-like appearance, we were thankful because she seemed to be thriving. We were not prepared for what would follow.
To parents faced with the challenge of raising a child with profound disabilities, our troubles may seem trivial. Looking in from the outside, I completely understand that point of view. My heart bleeds for families struggling through those difficult challenges.
But, from the inside looking out, our perspective is quite different. Our daughter’s challenges may not be physical but are challenges none-the-less.
Over her first few years, Claire needed many small surgical procedures: to correct underdeveloped tear ducts, to put tubes in her ears because of malformed Eustachian tubes, and to correct her abdominal diastasis. Her fingernails and toenails grew in eventually, but remained oddly shaped. Still, these were nothing more than minor inconveniences, and easily dealt with.
The life-impacting struggles she would face were invisible, for the most part. Her hearing was affected by constant ear infections, and so her brain learned to process things visually, instead of through sounds. This meant she processed words slowly, by first changing them into pictures. Her brain’s ability to plan, organize, and sequence, as well understand time concept was also impaired, likely due to that restricted blood flow.
These executive functioning skills are essential for success in our fast-paced world, but unfortunately were ones that would remain poorly developed in Claire.
Now, here is the rub: our beautiful, little girl with all these learning disabilities including: a written output disorder, ADHD, and dyscalculia (difficulty with math,) was also diagnosed as being gifted. Twice exceptional, was the term the psychologist used.
Imagine our confusion. How could a child be both learning disabled and gifted?
I poured through articles and books, went to support groups, and talked to a wonderful child psychologist. I was very invested in understanding this apparent oxymoron, yet I still had trouble comprehending what it meant. Her teachers, who were most definitely not as invested, did not understand. Her gifts masked her challenges and her challenges masked her gifts, typical of a twice-exceptional student. What the teachers saw was a bright but lazy child, one who made a conscious choice not to achieve. At school, she became adept at hiding the frustration and anxiety that kept her in tears and unable to sleep at night, confirming their belief that she just did not care.
My girl was mature and bright, anyone speaking to her could perceive her intelligence, but at age eight, she couldn’t write more than three sentences in her journal without sobbing, “I can’t do this. I’m going to die.” When I scribed for her, the poetry and stories she produced were stunning.
Some days I’d find her hiding in the closet pulling out handfuls of hair because, as she told me, “I’m so frusterated I want to pull all my hair out until I’m bald.” She developed frequent stomachaches and told me, “If you were a good mother, you would home school me.”
This sweet girl was called lazy and incapable so many times by her teachers she started to believe it.
I often wondered how it would feel to have the intelligence to understand you should be able to achieve, but to realize you were incapable of doing so? To constantly be told: “Just do it. If you really wanted to, you could. Your problem is you don’t care enough.”
Despite my interventions and constant affirmations, my gentle, old-soul of a daughter headed into depression. Claire made it through grade five, barely, but with the increasing academic challenges of middle school, she fell apart. She learned to use a keyboard, which helped unleash those breathtaking stories and poetry, but her organization skills worsened and she floundered in math and science. Her teachers still did not understand her inability to achieve and continued to chastise her for laziness. She became withdrawn, and her poetry got darker.
The more isolated she became the more I worried.
They don’t give you an owner’s manual when you give birth. Wouldn’t that be awesome? How to burp a baby: page seventy-three. But then, it’s easy when they’re babies. You just bumble along, changing diapers, trying to feed the noisy little creatures, and hoping you don’t drop them on their heads when you slide the slippery little things out of the bath.
Then they grow up on you, and it gets much harder. That’s when you need that set of instructions. That’s when you need something—anything—to tell you when to intervene and when to stop.
I kept asking. I asked her teachers. I asked her doctor. I asked her psychologist. “When do I stop helping her? What if she falls apart and fails, if I do? Will she learn from that? Or will it destroy her self-confidence even more? What if I stop, and she sinks further into depression because she thinks I don’t care?” No one had the answers. And so, my momma-bear instincts kicked in and I did what my heart told me to do, I helped. I knew she had amazing ideas inside that brilliant head of hers so I helped her get it out. Unfortunately, in the process, I became a horrible helicopter-parent.
“Did you bring your math home? Did you finish your homework? Your science test is on Tuesday; please don’t forget to bring your textbook home.” It was awful. I told myself to stop; that she would never learn to cope on her own, if I didn’t. But I was terrified. What if I did stop, and she didn’t learn?
In grade eight, she ran away from home on the day of the school’s end-of–year award ceremony. She had spent the morning watching her friends receive award after award as she desperately hoped for at least a physical education award. In the end, she left empty-handed. I found her hours later, alone and crying in a neighbor’s back yard. I wasn’t sure whose heart was more crushed, hers or mine.
But, despite my fear Claire would not survive high school, she surprised us all. After a rocky start in grade nine, we decided the time had come to try something new. It came in the form of ADHD medication, introduced in grade ten, and turned her life around. She told me, “Everything is clearer now, like a fog has lifted.” Each year things got better and better as she finally learned adaptation skills. She graduated in the top five percent of her class and we thought, “Wow, everything is finally working out for her.”
Then, just as she was about to begin her university studies, Claire suffered a moderately severe concussion. The consequences of this injury included a worsening of her executive functioning abilities. As a result, her fragile grasp on those newly formed adaptation skills was profoundly impacted. The growing demands of school began to exceed her ability to cope, and her anxiety and depression returned in spades. The medication that had been her savior for three years became her enemy, increasing her anxiety to such dangerous levels she had to stop taking it. Without its chemical assistance, the challenges of school began to unravel her.
And, after three years of not having to be that horrible, overly involved parent, I found myself back in the helicopter role.
This was not something my nineteen-year-old daughter either appreciated, or wanted. I didn’t want it either; I wanted to be her cheerleader. But my fear for her made it impossible to stop. Believe me, I tried. Everyday, I’d utter my mantra: “Don’t ask about her schoolwork. Remember, this is her problem, not yours.”
Sometimes I’d make it a whole week before asking, but as I watched her struggle and sink back towards the black pit of depression, I’d start nagging again. I could see she wanted desperately to handle things on her own, to exert her independence. I could also see it wasn’t working. We began fighting, constantly at each other’s throats. I knew I had to try something different. Desperate to not destroy our relationship with my nagging, I finally found what I hoped would be a solution. I found a life skills coach.
Sarah is an incredible woman. A teacher with a master’s degree in psychology, she might just be our savior. Her job is to guide children with executive functioning deficits, and help them to learn the skills necessary to be successful in life. By some happy coincidence, this woman just happens to have Claire’s exact learning profile. Being twice exceptional herself, she has amazing insight into what my daughter is going through. I thank the universe daily for sending her into our lives, because now I get to be the cheerleader.
I pray Claire’s struggles will lessen as she matures. Sadly, I’m not convinced they will, but I will continue to be a most stalwart defender of this gentle, loving, and quite extraordinary young woman. I will always feel her pain and want to heal her, cry when her heart is breaking, and rejoice when she is victorious. That’s because, no matter what the future holds in store for her, I will always be her mother.
About the Author
Leslie Wibberley loves the written word almost as much as her family. Her creative nonfiction essays can be found in Mamalode, Mothers Always Write, Literary Mama, and The Manifest Station, and her short stories in Devolution Z, Chicken Soup for the Soul and Literary Mama. Her work has also won a 6th place and an Honorable Mention in Writer’s Digest’s Annual Competitions.