CPstrong Community Stories: Parent Perspective

Adopting a Child with Cerebral Palsy

By Emily M.

Today I’m here to share a bit of the parent’s perspective on cerebral palsy. I didn’t grow up very aware of cerebral palsy beyond a wheelchair-bound man in my church growing up, but our youngest child, who is adopted, brought our family into the CP community.

When my husband and I felt called to become foster parents, we had questions about how adding another child into our family would affect our four bio kids. When you become licensed as a foster parent, you literally have a checklist of attributes (sex/age/ethnicity/disability/etc) you’re willing to consider. We checked the box for “mild” disabilities, figuring we could handle a child with ADD or a hearing aid (which one of our bio kids has). The first call we got was for a little 2 year-old girl who had been born at 26 weeks with drug exposure in utero. She had developmental delays, a g-tube, impaired vision, and was on supplemental oxygen and seven different daily medications. We met her and immediately knew she belonged with us. She did not have a cerebral palsy diagnosis at the time, which I am grateful for! In our ignorance, the other things all somehow sounded doable, while we probably would have been scared away by cerebral palsy. 

Within a year, A was diagnosed with spastic diplegic cerebral palsy, and within a few more months, we adopted her. Instead of being scared by her diagnosis (and many others that have come along in the past six years), we found that understanding the nature of her disabilities better allowed us to find resources to help her live the fullest life she can. She has learned to walk twice–once, at three and a half years, and again, at seven and a half years, after a selective dorsal rhizotomy that involved A and I living in a rehab hospital out of state for half the summer with the amazing team at Shirley Ryan Ability Lab.

“A” hard at work in therapy!! Way to go!

While younger me was fearful of having a child with disabilities, what I’ve realized is that of course you love your children unconditionally, and whatever challenges they have, whether emotional, physical, spiritual, or academic, just are part of who they are. I have had to learn to advocate for my daughter in doctor’s appointments, to learn from her physical and occupational therapists, to explain to curious little kids in Sunday School or at the park why A walks funny and has big braces on her legs, and, most daunting for me, to fight insurance for coverage of services. But I have also met countless generous fellow CP parents, therapists, medical professionals, social workers, babysitters, and teachers who truly want to come alongside and help us help our daughter thrive.

A marching through a Christmas Tree Farm over the holidays

We originally worried about the impact of fostering a child with special needs on our other kids. I now worry about what kind of teenagers they would be without a little sister who requires their patience and assistance. A is physically weaker and slower than her siblings were at eight and a half, but she definitely wants to keep up with them as much as possible! Yesterday I glanced out at her pushing a stroller back and forth alongside her 18 year old brother who was mowing the lawn. Her sisters all help tighten her AFOs and get the Billy shoes on over them, something that she is still unable to do completely on her own, and of course she wants to dress and do her hair like them. On vacation last week, we visited Hannibal, MO, and walked along the riverfront where Mark Twain grew up. A’s cerebral palsy means she has to walk slower and has less stamina than her teenage siblings, but that just meant that we all needed to slow down and saunter along the Mississippi. I think Mark Twain would have approved.

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