The first Mother’s Day after Heidi was born, I received a lot of kind comments at church about what a great parent I am and how special our family must be to have been gifted with such a special little angel from heaven.
Honestly, those words felt good. On the night Heidi was born, our doctor said “Down syndrome” a lot. My good husband, Rod, and I, were unsure what was going to unfold in our young family.
At that time, the six of us were symbolically sailing in a small boat floating in fairly deep, yet exhilarating waters. At least we were handed a good map, a fishing pole, a paddle and a few supplies.
We noticed a few lighthouses along the coastline, with sunshine and fluffy clouds overhead. We were able to stay afloat in our little craft despite admonishments from professionals regarding Heidi’s prematurity, various eye exercises, physical and occupational therapies, as well as the ever-important speech therapy sessions.
My to-do list for Heidi was long. I hoped I wouldn’t neglect our three other daughters and my husband. I was young, energetic, and bound to do it all with a smile (and some fabulous earrings).
The traditional “map” we were given to guide our developmentally-delayed child encouraged us to stimulate her mind, muscles, and emotions with different activities and experiences. Her muscles and ligaments were hypo-tonia (weaker), so it took Heidi great effort to sit up, roll over, scoot along, then crawl. Bless her heart, we worked as a team, cheering her on, gradually meeting markers along this less-traveled passage.
Perhaps it was best we didn’t know what daunting experiences were ahead on our adventure. Yet, I would have liked to have found books warning us of the sharp rocks under the surface representing difficult meetings with school and government programs, the rip tides of sibling rivalry, or ways to divert painful undercurrents of misjudgment of various situations.
As full-time caregivers, I wish professionals would have stressed self-care to my husband and me throughout the years, instead of focusing on Heidi’s goals.
Even though our family was unprepared for life within the disability realm, we had a boatload of love and commitment, and continued merrily on our way over the deep blue sea. Heidi was sweet, bright, cooperative, and loving. What a joy!
Looking back a few decades when Heidi was young, citizens were rarely warned that common household cleaning chemicals and yard sprays can cause serious harm to human cells. Folks were learning artificial dyes, flavorings, and added hormones to our groceries frequently alter brain and body chemistry. Who knew prescription drugs, surgeries, and vaccines sometimes have adverse effects on fragile individuals, especially those with abnormal chromosomes? Certainly not most.
In real life, Heidi became extremely sensitive to textures, tastes, sights and sounds. She became continually anxious, which caused her to randomly take off on a dead run, not take naps, nor sleep well — ever. Our angel gradually stopped smiling, hugging us, and talking much. She began to hate what she used to love, like school, ballgames and church.
After embracing modern manufacturing methods for years, (and trying to do it all) our family’s small symbolic boat was not faring well in the choppy oceans of stress and overachievement. Our precious supplies of health and energy ran dangerously low from junk food and chemicals, while the sails overhead were ripped ragged from the fierce winds of grief and fatigue. The skies were frequently dark with clouds of fear and guilt.
I had to ask myself, “She’s beyond stubborn. Why these bizarre behaviors? Why does she love her movies more than us?”
It was heartbreaking.
Over the years Mother’s Day meals, flowers and gifts from my daughters, husband and folks were truly appreciated. Especially cards — with hand written notes — were treasured, because I felt inadequate. It seemed there was never enough of me for them.
At age 13, Heidi was finally dual-diagnosed with Down syndrome and autism. This explained why we felt like our small boat had capsized at times and family members had slipped into salty, dangerous waters. I was exceedingly grateful for a faithful husband, big-hearted neighbors, and non-judgmental care providers — who showed up like the coast guard, throwing us life preservers, providing cheer, and supporting all of our girls.
Being at church was not peaceful for Heidi — she doesn’t like crowds — so it wasn’t restful for us either. Over the years we made many adaptations, and they helped. As an adult, Miss Heidi will likely stay home with a care-provider on Mother’s Day and listen to music of children sweetly singing Sabbath songs — and I’m okay with that. I’m grateful Heidi’s sisters have grown into incredible women and amazing mothers from this whole experience.
On Mother’s Day kindhearted people usually reach out to couples with infertility, moms with rebellious teenagers, and single women longing for marriage. I suspect many are saddened for moms of disabled children, but I know life is in divine order. My innermost heart reminds me not to measure my self-worth through Heidi’s progress or digressions. I know I’m a diligent mother. All is well.
Know what? I look forward to Mother’s Day dinner at our daughter’s home while we ladies enjoy whatever the guys and kids fix. This year, we’re putting ourselves on our to-do list. Hope you’ll do the same.
Pearson is an award-winning writer and national motivational speaker. She can be reached at email@example.com