My chromosomally-gifted girl was all of 18 hours old when a doctor friend of a family member, who had a lot of experience working with disability, came into my hospital room, stood at the foot of my bed, and told me, “You have to be prepared to be an advocate for your daughter, because no one else is going to do it.”
I was really vulnerable in that moment. Emotionally, yes, but also physically. I think I still had a danged catheter in post-C-section. (Is that TMI? I taught NFP for 16 years, so my meter might be a little off!).
But perhaps that vulnerability is why that moment remains so vivid even now, sixteen-plus year later. My reaction in the moment was a little heart-whimper: But God, I don’t WANNA!
But that doctor was proved right immediately. Within twenty-four hours, my husband was battling the medical team, who couldn’t hear a heart murmur and thus saw no reason to order an EKG and echocardiogram, even though both were standard care for newborns with Down syndrome, because the prevalence of heart defects is so high.
For the record, we won that battle; she did get the heart scans… and she did have heart defects—profound enough to need open heart surgery at six months old.
In the sixteen years since that day in my postpartum hospital room, the truth of that doctor’s words have been proven again and again. My husband and I have invested a ton of time and energy into advocating for our daughter, and often for other kids (and adults) with disabilities.
In my first post about recognizing the sheer scope of what constitutes pro-life issues, I had to go pretty high level. I want to dig into some of these questions more deeply, and for a #specialneedsmama, this seems like the place to start.
The thing is, all of you outside Disability World just don’t get it. You can’t. Even those on the outskirts of the community (extended family members, etc.) often don’t.
The point of my first post was that you can’t just say these kids have a right to be here, to force the issue of bringing them into the world and into a given family, and then tell that family they’re on their own to bear the burden. To be pro-life presumes ongoing support. Otherwise you’re tying up heavy burdens, hard to carry, and laying them on people’s shoulders, while refusing to lift a finger to move them.
I know it seems heartless to call special needs parenting a heavy burden, hard to carry. But it IS a burden. A joyful burden—one that makes life rich and the family better, if we embrace the gift—but it is a burden nonetheless.
Here is a small taste of that burden:
- At six weeks old, my daughter contracted RSV and landed on a ventilator in the PICU. My husband was told to “prepare himself.” 10 days in the hospital, with another child at home to care for.
- A member of our Down syndrome community group developed leukemia as an infant and battled it for two years. (VERY common.)
- Multiple other members of our group had/have swallowing issues, causing the babies to aspirate and develop pneumonia repeatedly. For one family, it took 2-3 years to identify the root cause, and fixing it involved years more of therapy to learn to swallow. Including trips to specialty clinics in other states, expensive specialty formulas, and profound dietary limitations.
- For the first three years of her life, my daughter had in-home therapy FIVE TIMES A WEEK. The obvious burden is the cost (in this case, the state pays for it, thank God, via taxpayer funds), but also recognize that working this into a baby’s schedule around naps, nursing, and itinerant therapists’ schedules is a burden on any other children, too. We had a fabulous therapist who suggested lots of places in the community to meet for PT. Otherwise, my older child would have had no childhood, because he would have been tied to his baby sister’s therapy schedule.
- What does that burden of therapy look like? Neurotypical kids download their developmental milestones from some cosmic wifi. Kids with disabilities need help at every step. Learning to walk depends on cruising; cruising depends on standing; standing on pulling up; pulling up on the coordination to crawl; crawling on rolling and trunk strength; trunk strength on neck strength. Illness will set them back. My daughter was finally on the verge of walking a couple months past her second birthday. Then she got pneumonia and landed on a ventilator again for two weeks. It was another half year before she finally became a walker—at 2 3/4.
- My daughter, at sixteen, still needs to work on cleaning under her fingernails and brushing her hair properly. These are not educational goals, so they are not addressed through therapy at school; the burden is ours.
- Families need other families to draw on as resources because the challenges are so unique, but privacy regulations surrounding health and education make it nearly impossible to find each other. My daughter’s first three friends all came into our lives by chance encounters. And even with a community group in place, as we finally have now, the sheer exhaustion of dealing with the higher logistical reality of special needs parenting means families don’t always have the energy to add One More Thing—like a community group.
I thought I was going to dispense with the disability portion of being pro-life in one post, but I haven’t even touched educational issues, have I? And all this is only a small sliver of what ONE disability offers. Those with different disabilities have problems I can’t even begin to understand. What I hope is clear already is that to support families bearing these burdens is not a thing we can do as individuals. There are policy, society, and cultural implications.
Stay tuned.