For just a moment I thought, “maybe it’s better if she doesn’t make it.” Then the horror of that thought sank in. Was it the exhaustion brought on by 36 hours of labor? Was it the realization that what I saw as a statistical anomaly was now my reality? Was it that I’d seen how people treated my sister with arthrogryposis? Sometimes they were cruel; other times they would not even look her in the eye.
Could my faith be this weak? It was a fleeting moment, but I think about it every time I look at her. What if I had missed this? Down syndrome, an open heart surgery to repair 4 holes in her heart at 2 months old, SMO and AFO braces for hypotonia related pronation, autism, scoliosis, too many surgeries to count for strabismus and sleep apnea and ear issues, hearing aids and soon glasses.
School (we’ve been at 4) has been amazing, awful, at one point horrifying, and at other moments a letdown. It has also been a place of grace, love, and eventually a home. We’ve seen this little girl bring out the most beautiful in humanity, as well as the unexpected, negligent, and strangely vengeful. None of these experiences tell you anything about her. When I look at my daughter, I recognize the absurdity of interpreting all of that scary stuff on paper as a list of reasons why her life may be too hard to be worth it or not valuable enough.
What one might be missing when they look at that list is her emotional intelligence, and how she just knows when you need someone to hold your hand or give you a hug. They might not realize how she can soften the heart of the biggest bully or be a helper more easily than a hindrance. One might not notice how she knows exactly the right time to do the Happy Feet dance, shake her tail feathers, and throw out that laugh of hers that can almost sound like a bunch of monkeys playing in the trees. They might not take the time to receive the lessons in resilience and fortitude and faith that she can pass to you like others pass the salt.
There just are no words to adequately capture what we might have missed if she hadn’t made it that day, her birthday, as they whisked her off to be airlifted to Children’s Hospital. My doubt only lasted a moment, but I will never forget it. When others doubt what she can and will do, despite having overcome more obstacles than any one individual should have to overcome, I try to carry myself with grace. I am not always able to, but she is. She reminds me over and over of what God asks of me: quiet forgiveness (even of yourself), a soft heart, resilience in education, fortitude against injustice, a willingness to reach out and hold the hand of someone who needs it at just the right time, and unceasing faith.
Jill Reffett is the Executive Director of Embrace, which fosters opportunities for inclusive education in the Archdiocese of Kansas City, Kansas.