Editors Note – I met a friend of mine, Catherine and her daughter, Chrissy through Joni and Friends Family Retreats. Catherine is taking an online class and her classroom discussions are done via conversations online. The whole class can read and respond to anything another has said. Everyone responds to whatever topic is posted by an individual in the class. The topic of one particular discussion was Disability. Catherine shared with me where the conversation went and how she handled it. Her heart-felt response was one that truly touched me, one that needs to be shared:
One of the themes in this conversation is that our fear is based on the idea that ‘this’ (being disabled) could happen to any of us. That’s true. Anyone could become permanently disabled in an instant, all it takes is one accident. Also, anyone who wants children runs the risk of giving birth to a child who is disabled. It really could happen to you. And it is hard, very hard. And it is different. And people look at you and/or your kid funny. And they ask you if you did drugs while you were pregnant. And they want to know if you’ve tried this-or-that therapy that would surely fix her. And they pray that she will be healed. And you lose friends because they cannot relate to your experience, and you cannot relate to theirs. And you don’t get to go watch school concerts and little league baseball to cheer on your kid. If you’re lucky, and your child is able enough, you get to go to Special Olympics events. And you spend a substantial portion of your income and time at the doctor’s office. You spend a lot of time explaining over and over and over again what your child needs, and why she responds as she does, to teachers, therapists, Sunday School teachers, grocery clerks, babysitters (if you can get one), care-givers, and strangers. You sit up at night watching your child sleep because her seizures are acting up again, and your friend’s kid just died from having a seizure in her sleep – suffocated on the pillows.
It could happen to you.
And here’s the rest of the story that most people miss. My daughter does not see evil. Sometimes I wish she did because she might be a little safer in this world, but think about it… If all you saw was the beauty in every single person you met, wouldn’t that make life more enjoyable? If you weren’t distracted by your own judgments about people, and you were not riddled with insecurities, wouldn’t life be brighter? My daughter genuinely loves every person she meets. She also is keenly aware of other’s emotional states. I watched her walk up to a grocery clerk (before I could remind her to stay on our side of the check-out line), put her hand on the woman’s shoulder and turned the clerk to face her. When they were eye to eye, Chrissy said, “You look sad. I’m sorry you are sad.” The woman looked shocked, then broke down in tears while Chrissy held her and patted her back and reassured her that she would be okay someday. I stood there with my mouth open in sheer amazement at the beauty of my daughter, the same girl that so many people feel sorry for and want to fix. Why would you want to fix her? She is a more beautiful, compassionate, honest, and pure soul than most people on the planet. You know who else has those qualities? Her friends who are also disabled. They are a brilliant bunch of humans – in their own way. They have different abilities than most.
Fear exists due to lack of understanding. The next time you feel sorry for, or uncomfortable in the presence of someone with disabilities, I would challenge you to stay in the moment. Strike up a conversation. You will be the one to learn something new, I can promise that. And you just might have an experience that profoundly moves, challenges, and changes you. Pity is not needed. For parents of children with disabilities, compassion, not judgment or trite sayings, is helpful. A listening ear is always welcome.
It could happen to you. You too could be so lucky to have a child with different abilities than most. You too could get the opportunity to witness purity of heart on a daily basis. I am beyond thankful that Chrissy happened to me.”
Editor: Most people think of having a disability as a very negative thing. When parents are first faced with the diagnosis of a disability, the first felt emotion is fear. Doctor’s tend to instill that fear through worst-case scenario descriptions. But when you hear from a parent who has been there, walked through the fear and into the blessing, you begin to realize that what you once may have thought of as a burden, has actually become your blessing. The reason why I am personally so addicted to Family Retreats is because we actually see the best of humanity, not the worst. It’s a place where we are not too busy to see the beauty in each individual. It’s a place where I get to be loved by people like Chrissy.
For more information about Joni and Friends Family Retreats, visit: http://www.joniandfriends.org/family-retreats/