Special Needs Parenting Burnout

Oh, the poor single straw. Always to blame for breaking the camel’s back.

For me, the poor single straw appeared last week during our visit to Boston Children’s Hospital.

The poor straw was the realization that—unlike Albany Medical Center, which has a glass hallway connecting its parking garage to its medical building, and unlike Cincinnati Children’s Hospital, with its parking garage conveniently adjacent to the main building—a person who visits Boston Children’s must park her car in one building, go outside, wait at an intersection, cross a street, and then head up a mild incline to the hospital doors. And if it is below freezing, as it was on the day of our visit, and if you are pushing two small children in a double stroller, you must bundle them, brace them against this winter’s notorious “Arctic air,” and push on—out the garage doors, to the intersection, across the street, and up the small hill to the nation’s #1 children’s hospital.

How inconvenient, I thought.

What about medically fragile kids? I thought.

I was armed with medical records from another children’s hospital. The layout of this hospital in relation to its parking garage is, I thought to myself, not as good as the layout of Cincinnati Children’s.

This. This was the straw.

That I know the difference between this hospital and that.

That I can compare décor.

That I can admire the open designs and natural light of both Cincinnati Children’s and Dartmouth Medical Center.

That I can poo-poo the dingy aesthetics of Albany Medical Center. (Seriously, Albany? When was the last time you cleaned your carpets?)

That I can rattle off my opinions of these places like seasoned travelers might compare cruise lines or airports or fancy hotels. (Ah, the Four Seasons Maui. Excellent mattresses, sub-par pillows. Or whatever.)

This—this does not seem fair. I have been a mother for two years and nine months. This is how I’ve logged too many mothering hours: In hospital visits. In tests. In therapy appointments. In phone calls. In paperwork. In research. In doctor’s offices. In more therapy appointments. And in the quiet staring at the end of the day, eyes fixed on the white walls of our rented home, wondering What if What if What if.

What if she never talks, what if the blood test result isn’t an error, what if there’s something wrong with her right hip, what if she needs seizure medicine, what if she, what if she….

…until I land on the worst two hypotheticals, the evil twins that stand hand-in-hand like the those creepy girls in “The Shining”: What if she dies before me What if she outlives me?

On this afternoon at Boston Children’s, my husband and I took Fiona and our nine-month-old to a leading scoliosis specialist (he was wonderful) and a developmental pediatrician (she was wonderful). If the parking garage broke the poor camel’s back, the Oral History of Fiona’s Medical Care, as dictated by me to the developmental pediatrician, bludgeoned the poor camel dead in the sand.

Hearing myself explain every appointment we’ve ever had, every specialist we’ve visited, every test she’s endured, every seizure I could recall, every therapist she sees, every major and minor health concern we monitor—it was unfathomable.

Sometimes—and this is not helpful in any way, but—sometimes I stop myself in the middle of my life, remember the pregnant not-yet-mother I was back in 2011,

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…and wonder how she’d respond if she knew she’d be, say, coaxing her daughter through the third attempt at a catheter or washing the stinky electrode glue out of her daughter’s hair or sitting on the floor of her living room while her daughter’s physical therapist displays a catalogue of wheelchairs for her perusal.

Hearing myself offer the Oral History of Fiona’s Medical Care was like reliving, in brief, the heaviness of the past 2+ years. And by heaviness, I don’t mean, Gee, the weight of this dumbbell is heavy. I mean heavy as in monumental. As in planetary.

As in, did you know that the biggest black hole weighs 17 billion times more than the Sun?

I did not expect my mothering experience to be this heavy.

Because here’s the truth: while I regularly post images of Fiona like this:

Cute Fiona in hat

Cute Fiona in hat

…I just as often have to think about Fiona in ways like this:

Partial X-ray of Fiona's spine

Partial X-ray of Fiona’s spine

Lately, my eyes are glossing over when a therapist or doctor gives me yet another thing to do with or for my daughter. The important leg-strengthening exercise. The food choice board. The visual schedule. The iPad communication apps. The placement of each bite above her molar. The multi-vitamin drops. The possible hip brace. The possible spine brace….

I am going numb at the thought of reading a 300-page textbook on IEP’s rather than a book from my personal stack: Brian Doyle’s Leaping. Jeff Sharlet’s Sweet Heaven When I Die. Jennifer Senior’s All Joy and No Fun: The Paradox of Modern Parenting.

Parenting my daughter is full of joy, indeed. But weeding through the demands of her care is often no fun. No fun at all.

And this is why, after the appointments, I found myself in the parking lot of a Boston burrito shop, crying to my sister on the other end of the phone. I bemoaned my intimate knowledge of various children’s hospitals. I tried and failed to articulate the weight of this life. I posited the idea that perhaps I needed some retail therapy. Seriously needed some retail therapy.

There’s a temporary happy ending to this tale. My sister, in her infinite wisdom, not only directed me toward Old Navy.com’s recent sale (thank you, Diva Pants in Goodnight Nora blue). She also alerted my mother to my distress, who then arrived for a week to help out.

Fiona was deee-lighted.

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My husband and I went on a date.

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For long periods of time during the week, I felt like a whole and complete person again. And did I mention Fiona was deee-lighted?

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This is not an end. This is a temporary reprieve. My mother eventually left, and my husband and I have resumed the juggling act of our lives. (He’s currently at Dartmouth Children’s Hospital — X-rays, blood work.)

The calendar pages peel away, revealing next month’s appointments (ortho, neuro), revealing more and more and more therapy appointments. The to-do list lengthens. The advice piles beside the equally tall pile of questions. The sun rises in the morning, and falls in the evening, and somewhere in the universe, 17 billion times heavier than that sun, is the universe’s biggest black hole. There are heavier things, in other words, than this.

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11 thoughts on “Special Needs Parenting Burnout

  1. Another fabulous eloquent well-written post. Thank you. I am sharing it with the pediatric and child psychiatry residents who I train, because they need to hear your voice.

  2. I am always amazed at how well you write what is in my heart at the exact moment it’s there. I know that most people in our “community” know my situation with my daughters, but I am not sure most can ever grasp why Kaylee’s blundered prenatal test result affected me so incredibly. It is because of this…your story…the life of specialists, and tests, and the “what ifs”…for 11 years, and then to have to begin it all over again– different specialists, same hospitals…and the “what ifs” for not one but two daughters– daughters whom I will never watch fall in love, live independently…have real friends. The last one is the hardest as they get older– trust me. The emotional pain is unbearable sometimes. I suffered “special needs parenting burnout” before Kaylee was even born, and it sometimes takes every ounce of energy I have to make it through the day– days filled with double the therapists, double the doctors, double the medications, that remind me that there are double the fears…of survival. and of premature death.

    Thank you for sharing your journey– and for helping me feel less alone in my feelings.

  3. Tesi, (who replied above), bless you for ‘spreading the light’ to the residents you train by ensuring they get to hear the voice of this most precious mother, Heather. And to Heather, I stand with you, as a fellow mother, woman, and advocate. You inspire me in so many ways.

  4. I wish with all my heart that this society understood that parents like you–and many many others–need a caretaker EVERY DAY to assist you in bearing this heavy load. Any hope of that happening (obviously without gov’t help) for you?

  5. Even when you’re writing about something heavy, I love to read the way you string your thoughts together. I’m glad you’re a voice for many who likely do not express themselves as well in words as you do. Not speaking for them, but putting yourself out there so they can clearly see they’re not alone. And I’m glad your sister and mom are part of your village.

  6. My daughter is almost the same age as your Fiona. She will be three in July. She was born with her throat attached to her lungs. Two surgeries repaired it. Then pyloric stenosis, another repair. She came home from the hospital already four months old. She has a NJ feeding tube and a heart monitor. Another surgery at six months, for a mic-k feeding tube and they sewed up the top of her stomach to prevent her from nearly constant vomit. A year passed blissfully and the. Epilepsy, seizures 80% of the time and this past January brain surgery. She is recovering physically but her development is slow. Very slow.

    My fear is that we’ll get the autism diagnosis next and I will crumble from the pressure.

    We haven’t been to Boston, but we have stayed in seven hospitals in four states and I get it. Thank you so much for sharing. I am going to send folks to your blog. You have so eloquently written the experience. It is very hard and sometimes just a little too hard to manage. Thank goodness for your family.

  7. I happened upon your blog when googling “special needs parent burnout”. Today found me suffering special needs parent burnout! My child is 11 years old. My challenges are different than yours, but they are challenges still the same. I appreciate what you’ve written as somehow, in reading, I’ve gained some perspective and find, while my trials are still challenging, I think I can handle them again.

  8. That is an extremely poorly designed layout for a parking garage. My son’s hospital is similar, although we only have to walk across the road the ambulances and taxis come in on, across the roundabout and then across the other side of the same road – at least we don’t have quite as cold winters (although I have pushed him across in the pram in over 110oF temperatures, and in torrential rain. Not the same day, fortunately!) I swear at whoever designed that parking garage every time we have to use it though.

    I know my son’s hospital number off by heart.

    I have a folder with the medical letters and associated stuff which I take along, but I don’t refer to it often, because I also know his medical history pretty much by heart and it’s quicker if I say it. (I do have a tendency to focus on whatever the immediate problem is and leave out stuff I see as unrelated to that, which I have to remind myself to include).

    I am lucky because my son’s medical issues have become less of a focus now than the developmental issues (different folder; some crossover in letters.)

    No one really mentions how tiring just the hospital appointments are though. Just the getting there, the parking (and swearing), the waiting, the going through the history for the several billionth time, the listening and trying to absorb new information, note taking, the soul destroying weariness that can overtake you when you least expect it. The curve balls that come out of nowhere and shock you into tears. It’s balanced by joy, and by gratitude sometimes, but the days when you just wish that you were juggling play dates rather than trying to fit as many appointments in on one day so you only have to make one trip can be crushing. And I really wish clinics would run on multiple days to make it easier to do that! And that someone would redesign that effing parking garage.

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