On blogs and sites dedicated to raising children with disabilities, there is no shortage of inspiring stories of how our babies overcome tremendous odds to reach the "inchstones" that make us proud. When a non-ambulatory child finally walks after many years of hard work, physical therapy and sheer determination, we all celebrate together. When a non-verbal child is finally able to make her needs known somehow, we pore over every detail, hoping one day we will be able to recreate this story with our own little ones. When a child given a limited lifespan exceeds it, we are in awe of God, our kids, and yes, even ourselves- because good care is often the difference between life and death for the medically fragile child.
Yet we know deep down that we are no different than anyone else, but that like all parents, we have risen to these occasions. We rise to the momentous, but also to the small, to the everyday and the mundane. The baths are harder- our kids may be resistant, or afraid, or unable to assist us and requiring specialized equipment. Feeding can be tricky. Some of us have kids fed through tubes, IV's and various other devices which keep them alive but also complicate their lives, as well as our own. For some of us, we've had to figure out alternatives for seating at home and away from home...sleeping arrangements...child care. Everything is different, everything has an added layer of complication. Trips and vacations often simply cannot happen. Travel needs to be arranged months in advance. Even going to church or to a restaurant as a family presents extra issues which can often seem insurmountable. How do you change a nine year olds diaper in a restaurant ladies room, for instance? Infant changing tables are too small and the floor is too dirty...I could go on and on, but the idea is clear.
Though the blogs like to highlight the highs, the lows are just as important and worthy of mention. My seven year old loves music. She doesn't speak, but she is able to hum tunes in fairly good pitch. Sometimes, when music really excites her, she screams in delight. Screaming and humming, as well as other vocalizations, is quite simply how my daughter communicates and interacts with the world. In the absence of speech, she has these methods.
Yet, one day her inclusion music teacher had asked that she be removed from music class for singing along with the other children. Her noises, the woman opined, were a distraction and were impeding the education of the other students.
Needless to say I went all the way to the top on this one- contacting the principal of the school. She was allowed back in class and such an incident never happened again. But the hurt still remains; it's one of the salient low points. I've had many, and some have been life or death situations. Surgeries, respiratory emergencies caused by flu and infection. How then is this possibly a significant low point for me after what I've been through? Because this simple act of removing my child in the midst of her enjoyment, denied both her equality and her humanity. It denied her access to one of the few things that bring her joy, and that she does well, like the other kids do.
The highs are beautiful, and inspiring, and sublime. The lows are unspeakable. But just as you never know when the highs will grace your life, you cannot protect yourself or your child from the lows. You don't know if the next person you see will glare at you, or scoff at your child, or refuse to help her through a door. You don't know if the next bus driver will drive past your stop because he doesn't want to take an extra five minutes to secure a wheelchair. You don't know if the next customer service rep will be someone who rolls their eyes at your struggle.
All you can do is pray that you will have the strength and the grace to keep loving everyone around you even when those things happen. All you can do is to continue to believe that the world is good, and to continue to believe that your child is good, that your child is worthy. All you can do is to remind yourself that your child is not her disability, and that you are not just a parent of a special needs child. You are a complex, imperfect, lovable human being.
If you've done that as a parent of a child with disabilities, you have done well.
Suzi Walcott is a pediatric home health care nurse who specializes in working with children with disabilities. She is married with two daughters and one on the way. Her elder daughter is nine years old and has multiple disabilities and medical conditions. The younger one is almost six years old and is typically developing but born with visual challenges. Her contributions will examine the tests and triumphs of raising biracial children, specifically girls, with disabilities. Photo courtesy of Mo via Flickr
