In honor of my older daughter’s 6th birthday, I wanted to share a little more of my family’s journey through disability, life-upheaval, and our growing strength. Parenting a child with disabilities is overwhelming, confusing, and life-changing. Every day is challenging but monotonous.
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plans change
When I met my husband 15 years ago, I was a college freshman with big plans. I would complete a master’s degree in accounting, become a Certified Public Accountant, and get a high-paying job. I wouldn’t have to worry about money as my parents had, my kids would be able to play elementary school sports, and life would be busy but typical as I worked full-time.
Then, when I was 21, I was diagnosed with Crohn’s disease. My health demanded that I scale back my goals. I then planned to work as some sort of staff accountant, not a CPA, to reduce stress. I still wanted to work full-time, rather than become a stay-at-home mom when our kids eventually arrived.
I’ve always wanted to be a mom, but I never wanted that to be my only job. Honestly, I’m not great at connecting to kids other than my own or making them my sole focus. I like using my brain for something beyond childcare. Raising children is a huge, important job… but I wanted more.
Today, I am a stay-at-home mom. It would be nearly impossible for me to work a traditional 9-5 job, let alone the extended hours my dream job would have demanded. I built up a virtual bookkeeping business, and now this blog and podcast, during naptimes and after bedtime. My work allows me to be present for my girls but also use my brain still.
and change again
In 2015, I was happily pregnant after an early miscarriage the summer before. We went in for our 20-week ultrasound on St. Patrick’s Day. That’s when everything changed.
After the radiology technician became very quiet, a doctor came in to say there were irregularities with our baby’s brain and spine. We traveled 2 hours to see a maternal-fetal medicine specialist the next day, where our daughter was diagnosed with myelomeningocele spina bifida and hydrocephalus.
Part of her spinal cord had grown outside her body, causing a build-up of fluid in her brain. Although the diagnosis wasn’t life-threatening, it was serious. We were completely unprepared for life-altering news like that but still optimistic.
It was “just” spina bifida. A wheelchair isn’t a big deal. We could handle it.
upheaval
A few weeks later, we flew from Montana to Philadelphia, where we were told our baby didn’t qualify for the fetal spinal repair surgery we sought. As we discussed our options, one doctor told us, “if you’re lucky, your baby will have a personality.”
If you’re lucky, your baby will have a personality.
We spent nearly 3 months over 2100 miles from home, waiting for our sweet girl’s birth, surgeries, and NICU stay to be over. I spent the time researching, calling spina bifida clinics in our “region,” and trying to prepare for our new lives. My husband’s employer was amazing, offering him the time off too so we were together.
Our families hosted fundraisers to help pay for our increased expenses and decreased income. We were able to save enough to cover medical co-pays for the first few years too. Don’t even get me started on the financial side of health care and insurance in this country; my experiences have pointed out so many shortcomings in the current system.
We decided I would quit the job I didn’t love, so I could become our daughter’s caregiver. There were literally no qualified daycares for a child with her needs. No centers would even consider accepting such a medically complex child… another travesty in our system. Parents of children with disabilities are still entitled to outside occupations and respite time.
Our daughter’s first surgery happened when she was just 20 hours old, with a follow-up a week later. We couldn’t hold her for the first 48 hours, which was so much better than the 3-4 days we were told to expect.
It was terrifying to hold that tiny baby, less than 5 pounds while working around all the tubes and cords attached to her.
parenting a child with disabilities
Over the next year, we adjusted to being new parents, but also
- Physical therapy
- Occupational therapy
- Speech therapy
- Catheterizing a 3 month old
- EEGs to monitor seizures
- Infantile spasms, a form of epilepsy
- 3 life flights out of state, complete with my husband driving through the night to be with us
- A shunt revision (brain surgery)
- Failing more than one epilepsy medication
During one hospitalization for uncontrolled seizures, the on-call neurologist looked at our 11-month-old who was literally either seizing or sleeping for a week, and said “this could be her life.”
That day was the only time I’ve ever feared we’d lose our girl. Even if she survived hours and hours of seizures, what would her life be like? Would she ever walk, talk, or ride a bike?
So far, the answer to all of those questions is no. And that’s OK. She doesn’t have to speak verbally to convey sarcasm and humor.
Before he met my daughter, my sister’s boyfriend didn’t believe her stories about how my daughter could non-verbally crush an adult’s spirit. Once he met her, he understood. She refused to eat a single bite he offered her on our road trip, even though she was obviously hungry and he kindly offered to feed both the girls. Instead of accepting the food, she would open her mouth, turn her head away, and smirk.
She is sassy, sarcastic, and so smart. I would call her an expert at finding innovative ways to avoid the work she doesn’t want to do. Her life is never going to be easy or typical; she’s going to have to fight and persevere. I would do anything to make her path easier
today
Today, we also have a two-year-old daughter. She loves her big sister more than anyone and happily helps with her care where she can. This summer, she’s learning to hold doors open for her sister’s wheelchair and how to push the handicap accessible buttons on automatic doors.
Today, I am still feeding my six-year-old. She can’t feed herself. I am still pushing her in a wheelchair, picking her up to move her, and bathing her in a special chair.
Today, I’m still catheterizing her multiple times a day, coordinating speech, physical, and occupational therapy appointments as well as ABA therapies for her autism diagnosis. She sees over 20 medical professionals.
I am still fighting our health insurance company to ensure my girl has what she needs, working with her school to make sure she’s safe and cared for, and monitoring her medications, sleep, and seizures. We still travel out of state at least once a year for specialist care, an 800-mile round trip.
parenting a child with disabilities changes you
Having a child with complex medical needs or disabilities is hard. It’s exhausting, never-ending, and scary. We’re planning for our daughter to live with us for the rest of our lives. Our whole family fights for every bit of independence she gains.
My daughter has made me hard, laser-focused, stubborn as hell. My job now is to care for her, but also to advocate for her. I have to make sure she gets the services and treatments she needs… in a way we can afford.
Most days, I feel like I’m winging it. I follow a basic routine of medications and medical interventions, but I’m just making up the rest of my parenting. I’m lost when it comes to my two-year-old. I don’t really know how to potty train her or discipline her, even though I have an older child. It’s unsettling to be both a new mom and an experienced one.
That’s why the team of therapists and doctors who support my older daughter are also helping me raise my younger daughter. They’re the ones I turn to when I have a question about typical development or what to expect.
I know so much about parenting a child with disabilities, about medical complexities and genetic mutations, and durable medical equipment. I know much, much less about parenting a typically developing child and no longer have the time or will to read parenting books.
finding community
My daughter, and my loneliness as a new parent to a child with disabilities, are the reason I helped co-found a support group for local parents of children with special needs. I wanted her to know other kids like her, but I also needed a connection, a community who understood what we were going through. I wanted to know other parents who also avoided baby storytime at the library, who knew the pain of watching typically developing kids do what my own child can’t do.
Community, communal strength, are the most important assets a complex family can have. Heck, they’re probably just as important for typical families, in a less intense way. I can’t imagine raising children without my experienced group of friends or my sister who had kids first.
I’ve often thought of how nice it would have been to be a parent during the tribal days, where the whole village pitched in to raise all of the children. Knowing there are so many who genuinely care and have your back would ease the pressures of parenthood.
honestly, it’s hard being the parent of a child with disabilities
Having a newborn is isolating and overwhelming. Add in medical complications, and it’s even worse. I’ve been through both of those scenarios, I know how incredibly hard they both are. As your child grows, so do their problems.
Having a child with medical complications either makes you stronger or breaks you. I hate the platitude “God only gives you what you can handle.” Instead, I believe that you rise to the occasion. You find the will within to protect your child, to help them learn and grow.
I haven’t found that parenting gets easier, it just gets hard in different ways. Just remember that everyone is walking a tough path that you don’t understand, so show them empathy.
