Life Boats

Starting with the birth of my first child, well-intentioned people who don’t themselves have any kids with special needs have tried to tell me that parenting is pretty much the same for all of us. I appreciate their attempts to normalize my experience and welcome me to the Every Mom Club. However well-intended, though, comments like this can’t help but unrealistically deny what we special needs parents actually go through. We don’t just bear up under the challenges that pop up day to day, but we carry the continual fear of an uncharted and unimaginable future year after year.

The best analogy I’ve found to describe the relentless stress of special needs parenting is in Stephanie Hubach’s book, Same Lake, Different Boat.

She imagines a great lake with each family in its own boat. Every family will hit troubled waters at some point. Some will get stuck in the storm for longer or sail in and out of the turbulence more often than others.  Families of kids with special needs, though, enjoy fewer moments of smooth sailing and spend most of their journey in cold, icy waters far from shore. 

I actually find this image quite comforting when I wonder why I sometimes feel overwhelmed, exhausted, or just plain too “different” from other families.

So what does the relentlessness of special needs parenting look like in real life? Here’s but one recent example. Two distinct and seemingly manageable challenges, Margot’s sleep apnea and Miles’ fear of throwing up (yes, it’s a thing), feed off each other and suck other co-morbid symptoms and side effects into their orbit to create what I now fondly call The Vortex.

Here’s how it works: Margot’s sleep study turns up a severe case of sleep apnea (comes with the extra chromosome in 99% of cases), which causes daytime drowsiness, lack of concentration, and learning problems. Okay, we can fix that with regular visits to Comer Children’s Sleep Clinic and nightly use of a CPAP machine (with its adorable fighter pilot face mask and insatiable hunger for replacement parts and tweaky adjustments). 

In the quest to ever more finely tune Margot’s sleep patterns, the good docs decide to increase the oxygen levels in her fighter pilot machine. This causes morning tummy aches, acid reflux, missed school days and, oh yeah, lots of vomit. I mentioned Miles’ fear of vomit, right? His anxious  “sticky thoughts” are held in check (sort of) with regular therapy and behavior management interventions that also need tweaky adjustments and regular doctor visits. But even these don’t help when the body fluids start flying. His resulting panic can impact life for quite awhile. His sister then feels guilty for getting sick, which doesn’t help her sleep nor concentration…. You get the idea. Both kids now need extra doses of sympathy and patience, which we have to somehow find while whirling in the howling Vortex. And, there’s no end in sight.

My point? Parenting isn’t really the same for all of us, but I’m not complaining. It’s just life in my particular boat. Some families are enduring stomach flus this winter while others live with cancer, severe asthma or life-threatening allergies. Some reasonably expect smooth sailing again soon while others see decades of heaving swells ahead and the fear of it turns their insides to ice. It’s all shockingly arbitrary and unfair. But here’s the thing: every family experiences difficulty at some level, and each unique journey carries its own peculiar value. There’s no race to overcome the most challenges and take the Super Parent crown. No, parenting isn’t much the same for everyone, but it turns out we all need grace, compassion, and companions for the journey wherever we may be on life’s great lake. Grace and peace to you.