October is Down syndrome Awareness month, and I wanted to share a few (long!) thoughts before it’s over. Down syndrome is complicated for me. This is not the life I imagined for myself, this was meant for my friends who have much kinder hearts. So much about this journey is challenging, fatiguing, heartbreaking, anxiety-producing. There has been so much progress in medical care and therapeutic interventions…which leads to countless specialist appointments. Advocating for an inclusive educational setting is what’s best for Claire, but it’s incredibly time-consuming.
There’s a tendency in the Ds community to project a positive spin on raising a child with Ds. “Having a child with Ds is the best thing that’s ever happened to me! I wouldn’t change a thing!” Maybe that’s truly how some people feel, but sometimes it feels like a PR campaign against terminations of pregnancies with prenatal diagnoses of Ds, now that first trimester testing is more common. That’s complicated for me too: I am pro-choice, but I fear a world where people with Ds are even less welcome than they are now. Disability is part of the human condition, and a loving community should create space and support for everyone.
I want people to know that the possibilities for people with Ds are better than they ever have been. We hope for Claire’s life to be rich and fulfilling. Maybe she’ll go to college and live in her own home as an adult. But I’m not going to sugar-coat the efforts that go into making that happen.
Deciding to become a parent is a huge decision, and from my journey so far I’ve learned that you never know what our children will bring into our lives. You can’t predict or control who our children will be or what joys and challenges they will present. Our visions of the perfect children we produce are only illusions, projections of ourselves. Parenting so far has been a powerful journey of learning to truly see and accept my children for who they are, and learn how to best address their needs.
We are incredibly lucky to have access to services and care through Medicaid. I fear that Claire’s bright future could be in jeopardy without that support. We need more support, not less. Recent conversations about gender have amplified for me the gendered aspects of caring for a child with “special needs”–moms do the lion’s share of care coordination, research, worrying, etc. I read recently that moms (but not dads) of kids with special needs experience stress levels similar to those experiencing combat stress, with significant health impacts. I struggle constantly with stress and anxiety and have for years (approximately 8 years ). Balancing all of that with self-care is almost impossible, but I keep trying.
I composed these thoughts in my head this morning as I cuddled Claire on the couch while listening to the Elmo song yet again. The ferocity of my love for her sometimes overcomes me. Please help create a world where she (and Sam) is loved and accepted. Teach your children to go out of their way to include her. Fight to defend and expand the services that she needs. Understand if we don’t show up for your community event. Love us and support us.
…originally posted to my FB account in October 2017…