Journey to Joy: Special Needs and The Bruce Family
A personal narrative about the benefits of respite care
We were in our late twenties when we were married in majestic Yosemite National Park. As is true of the place where our commitment began, with its beauty and grandeur, avalanches and floods, our life together leaves us in awe of a force greater than ourselves and the staying power of love.
During our first couple of newlywed years we enjoyed time with friends and family, the employer-defined 2 weeks vacation and each other! We truly had what seemed like a cushy start! We now know "cushy" and adversity both have roles to play in strengthening a marriage.
As our 3rd year of marriage approached, we thought about starting a family. Neither Mike nor I had great aspirations defined by the challenge, purpose, or outcome of raising children...we just figured it was the family thing to do! We realize now that the casual attitude we had toward our parenting dreams allowed for flexibility when embracing our children's differences.
Pregnancy came quickly. At about my seventh month, the baby's slow growth warranted an ultrasound which revealed the possibility of hydrocephaly. Mike and I aren't sure why we battled the decision for shunt placement surgery. In hindsight we figure a good dose of denial, divine intervention, and our mutual rebellious natures all played a part in our questioning the powers that be. We got a second opinion from a doctor who confirmed that our baby, Laura, didn't have hydrocephaly and so no shunt was needed. However, there was evidence that a stroke had left our infant with brain damage. The doctor who provided the second opinion could offer us only a non-definitive prognosis. He explained that Laura might have a slightly weak right side or that she might never walk or speak. Hmmm, that was quite a range of possibilities.
Beyond the turmoil of the yes-no-yes-no decision about the surgery, I truly don't remember being preoccupied by the question of Laura's near or far potential. We were simply parents. We were already enamored.
From the start, Laura's love of life, giggling, loyalty to family and friends, and her sixth sense about people's thoughts and feelings made an indelible impression wherever she went. She had no verbal speech other than the words "MaMa" and "Yeah" in countless tones and levels of intensity. Yet, she had a way of orchestrating the activities of everyone in her presence. Insistently and repeatedly, her hand scooping air toward her own shoulder, she would beckon someone to come. She would pound on a designated seat to make clear where they would sit--all in order to further her ultimate objective, which was typically a spirited round of UNO or Yahtzee.
Bringing people together to enjoy life and laughter was the greater goal! When folks who knew Laura well were asked, "So, how do you understand what she wants," the knowing person would offer a cocky response like, "Don't worry, she'll let you know!"
Our second child, Ben, seemed like a miracle to us as he was our first to develop typically. Years later, we happen to know he is very bright and a gifted musician. More importantly he has developed a deep appreciation of people and their unique abilities that he developed by being the brother of two siblings with disabilities. We learned that having proper help, which created balance, was as important for Ben as for us.
Ben was only eighteen-months-old when we welcomed sweet Christopher into our home. Chrissy's cherub cheeks and curly blond hair had everyone responding to the angel that he was. We were on our traditional "invite everyone we know" spring vacation in Yosemite National Park, hunkered down in tiny cabins along the river, when we got our first hint of Christopher's limitations. Two of Laura's dear therapists from Easter Seal Society had joined us on this vacation. Amidst the campfires and good times they gently told us that 3-month-old Christopher might be blind. Not long after, we learned from an MRI that Christopher's brain damage and optic nerve atrophy were very similar to Laura's. Both children were presumed to have had strokes while in the womb due to a condition that affects blood coagulation.
This time around, I did not have the luxury of the one-day-at-a-time naivetÚ I had when Laura was a baby. Five years of Laura's life seemed to flash by within minutes... doctor visits, surgeries, seizures, hospital stays, IEP meetings, shuttling to therapies, specialist after specialist, delayed growth, and even intimidating paperwork. Prior to that, I can truly say that the big picture of parenting Laura had never occurred to me. Inevitably, I would experience the fleeting thought and feelings of, "I can't do this again." But the lessons we learned from Christopher's enjoyment of the world around him brought more joy to our family than any burden he presented. The need to have care providers continually available to our family became firmly established in my heart and mind.
These days, we giggle at the memories of our deteriorating fastidiousness with each added bundle of joy (we had three)! Do-it-yourself parenting disintegrated into grabbing for assistance at every turn. Be it real or imagined, there were times I felt that people judged me for needing so much help with the kids. Thankfully, truth overcame reticence as our care providers proved to be invaluable to the health and well-being of our family.
My husband and I call ourselves "statistics busters" on those graphs of incidences that often lead to divorce. The now common "make time to have one date per week" advice is applied by parents of children with special needs as a tourniquet that keeps their relationship alive. The struggle to find folks to babysit for our children with cerebral palsy was as pressing as our dire need for some time alone. The old adage "it's easier to do it ourselves" nearly became a deterrent to finding the respite care we needed.
Failed searches made me feel unbearably alone and I wanted to scream "my children are so amazing and sweet, please see past their differences." Being a resourceful and determined person (otherwise known as bullish and stubborn) the search for childcare, with the constant turnover of caregivers, was a chore as relentless as the custodial care of my handicapped kids. But we persevered.
We somehow managed it. As a couple we had date night and rejuvenating trips. As a family, caregivers accompanied and assisted with simple trips to the playground, and going to church. We hosted BBQ's, holiday open houses, and parties galore. We went to our typical son's baseball games, tried tent camping, hiked in the woods, played in the snow, and took boat rides and road trips that will forever remain etched in our minds. Yes, there were serious considerations. We never traveled without an awareness of the local medical facilities. We toted liquid Valium to administer rectally in case one of the children had a seizure, and diapers were never, ever outgrown.
Even our cherished, traditional spring trips to Yosemite continued! Because of wheelchairs and "Riftons" (posture assisting chairs) our load was even more ridiculous than the typical pile of strollers, cribs, toys and diaper bags that accompany all young families, but worth every bit of effort. ne of our favorite memories is of Laura and Christopher scooting about in their ski bib overalls--Chris, from cabin to river to play in the water, and Laura, from cabin to cabin to bug anyone who would give her the attention she was sure she deserved!
The wonderful family activities we enjoyed would not have been possible if it weren't for the amazing stream of care providers who helped us along the way. When babysitters and nannies entered our daily lives, everyone benefited. With helpers tending to Laura's and Christopher's custodial needs, each of our family members was able to shine. Mom, Dad, and the kids were free to offer the gifts they would have naturally contributed to our family.
Early on, with our one child who had cerebral palsy, the need for care providers was minimal. Still, when that need arose and we sought typical sitters using typical means, the experience was painful. I can recall a delightful young lady excitedly stepping into our home for an interview and gradually sinking into a reticent place and finding the strength to say, "Uh, I don't think so."
Unti then, discomfort with Laura's lesser abilities or drooling was foreign to us. Trial and error taught us to seek out mature caregivers or those familiar with special needs. Instead of conducting a traditional interview, we went for a more active approach and would invite a potential caregiver to join us for a game of UNO where Laura's infectious giggles flowed each time someone received a "Draw 4" card. Her limitations became less daunting in the bright light of her intelligence and wit.
With two children, Ben's typical bedtime routines and druthers just became part of the drill. But, with our third, Christopher, also with cerebral palsy, finding care became a real ordeal! No matter how flexible and willing caregivers seemed to be, the dreaded "seizure procedures" couldn't be avoided. At the time I just wanted to scream, "They're just sweet kids with a few quirks -- don't you get that!" But now as I write this, I wonder how we came to enjoy the number and quality of providers that we did!
One amazing young lady, who cared for our kids, joined us for a three week trip driving through Northern California, Oregon and Washington State. We enjoyed frolicking in hotel swimming pools, race cars in amusement parks, visiting friends and relatives, inconvenient car breakdowns, horseback riding and lots more fun and laziness together. At one pit stop, we were all set to go until I remembered another item I needed to buy, ran back into the store to get it, climbed back in the car, and took off. Laura, who had no speech, was making all kinds of desperate noises. As I glanced in the rear view mirror, I saw her frantically signing "beautiful" and showing me the letter "C." I finally realized Laura was telling me something about Christie, the caregiver who was with us on the trip. It seems she had also left the van for a moment to get something and we nearly drove off without her! We never would have been able to take this trip and enjoy it so much, if it hadn't been for Christie.
A deep breath and quieting of the mind helps one comprehend, yet never quite reconcile the reality of what then happened to our family. Christopher passed away from pneumonia, in March, 2004. Only a little over a year later, in April, 2005, Laura passed away from complications related to intestinal problems. Their deaths were primarily unrelated to their disabilities, as they were generally healthy and expected to live long lives-and this made it so much harder to understand.
In the wake of Laura's death I learned that she and Dagmara, another one of our treasured caregivers, dreamed about Laura being the flower girl at Dagmara's wedding. I was told they had many other "girlfriend" moments as they became closer. When I learned about this, I was amazed at how mature it sounded-Laura making plans to be a flower girl at a friend's wedding! As parents we tend to see our children only as the young ones we've known and are slow to recognize the depths of their personal development. This is clearly no less true of children with special needs. I am so thankful for this particular moment of insight into my daughter's personal life-she was growing into a young woman-and, in the crush of caregiving activities, this would have been so easy to miss.
Being flexible, having a sense of humor and finding joy in unexpected places, can pole-vault us over the greatest of challenges. Yet, having a positive attitude does not mean one will escape sadness, discomfort, or even that feeling of being overwhelmed or the need for healthy distractions. Accepting the help of caregivers does not mean you're shirking responsibilities. It gives you the opportunity to play a role in your own life and by extension play a more meaningful role in the lives of your children and spouse.
The appearance of strength or resilience can be an effective fašade for masking exhaustion or emotional burnout. I know, I used to think I could prove myself invincible, capable of taking care of everything and everyone all the time. I felt a sneaking suspicion of guilt for needing help in the first place. And the irony, for instance, of needing a babysitter so I could find a babysitter was not lost on me!
I learned through the years to methodically and consistently replenish our pool of caregivers. Now, with a bit more time available, my husband and I have founded a non-profit organization that helps families of children with special needs find willing caregivers. I learned not to be overjoyed at the possible discovery of the "perfect nanny." Sentiments such as, "Oh my gosh, she sounds so great, our dreams have come true," which often come out of that first phone interview with a new caregiver, aren't more than a bubble waiting to burst.
In reality, caregivers come and go over the years, each with their gifts and shortcomings. What a joyful and enthralling circus it can be-if you let it!
Our caregivers shared the load of the unrelenting needs of our kids, gave more than they will ever know to their social development and happiness, and ultimately provided the respite needed for our entire family to do and be their best. Never, I say to all the families who live the same kind of life we did, underestimate the power and empowerment inherent in accepting the help you need and deserve.
Louise Bruce is executive director and co-founder of The LaChris Connection.