He may never walk..far more disabling is if he walks all over someone weaker.
He may never speak…far more impaired if he speaks cruel and unkind words.
He might never live on his own…a bigger failure if he lives only for himself.
He may never act like all the other children…much sadder world if his actions cause hurt to another’s spirit.
When we first announced Israel’s adoption, many asked if he would ever walk. And honestly, when I first saw his adoption file, I held onto this thread of hope that he might walk some day. We know now that with his level of impairment this will never be true, and for me it’s been a journey to acceptance. We know that Israel will never kick a ball, walk down the aisle to receive a diploma, or simply stroll along a beach. It’s little things during the day, where it hits me. A child his age racing past on the playground is hard to watch as Israel drags his legs across the sand, or his desire to do the swings “myself, no help”. But what I have learned in this journey are some hard truths. Truths about what is truly handicapped and disabled when it comes to humans. Truths about myself and my own parenting. Because truly, when you parent a child who has a disability or a special need, you are shining a mirror at your own inabilities, prejudices and handicaps.
- I fail as the perfect mother..a thousand times, a thousand ways every week. And the funny part is that even if my children were all neuro-typical, I’d still fail. Let me recount some of my highlight fails. I’ve forgotten that my son is on latex precautions and given him a balloon. I’ve put him in a bathtub with his brother without realizing that warm water stimulates movement in the nether regions. I’ve missed appointments, forgotten IEP’s and I’ve gotten frustrated when I’ve had to lift my non-ambulatory child to wash his hands…one more time. I’ve gone against the advice of specialists and said ‘no’ to an intensive feeding therapy clinic that was 5 days a week and located 80 miles from my home, because it was impossible to manage. I’ve also failed with my other children. I’ve sent my middle son to school without his hearing aid after wondering all morning why he wasn’t “listening” to me. I’ve been called by the school nurse because I forgot to send my g-tube dependent daughter’s food in her backpack. I’ve skipped bath-times and had my son wear his AFOs(foot braces) at night so he could wear cute shoes during the day. But I have also succeeded and this has been the hardest for me. I have succeeded in allowing my special needs children to fail. Yes, I make them do hard things over and over, and I watch them fail. One of the hardest things I have ever had to do was watch Israel fall and then wipe his tears and say, “that’s okay, try again”. There are times that I literally leave the room in order to not step in and make things easier for Israel. If he wants it, he has to do it. I am learning that my children don’t see their disabilities as disabling. They aren’t afraid to try and if I am hesitant, they will be hesitant. If I don’t allow them to try, they will never succeed. If I show fear, they will be afraid. Fear is far more disabling than a wheelchair. And so while I fail everyday, so does he. This failure has taught me that every time he falls, he is one more step closer to succeeding. And every time I fail, I am one more step closer to understanding what is truly important…and I know it’s not found in parenting perfectly.
- I have had to make hard decisions. I have had to walk a fine line between giving my children a “normal” childhood and choosing between countless therapies and appointments and determining what is essential. I’ve made medical decisions that have no clear cut answers and really are two options, with one seeming less painful. I have sat weeping in my car after appointments and therapies, and I’ve looked at my special needs children and wondered how badly I may have screwed things up. I’ve sat in those hard plastic chairs with a mask of composure and heard worse case scenarios that play out in my mama imagination in devastating real-time. I’ve tasted words like “severe institutional neglect” and “quality of life decision” on my tongue and I’ve spit them out with bitterness and anger. And I’ve questioned God. I’ve sat in my car and wept because I couldn’t understand how this was the answer. I couldn’t comprehend how human choices had wrought pain and disability on my child. I’ve sat with a strong smile and a brave face, while holding down my baby for one more procedure or kissed their cheek as they were rolled back for a surgery. And I’ve pretended to be strong and fallen weeping as soon as the surgical doors closed. And I’ve failed at being tough every time, but I guess that’s the thing with failure, you always have another chance. I’ve learned that my children have a strength and resilience that is independent of me; because they’ve fought through the hard surgeries, painful therapies, and live a childhood where everything that comes easy to other children, is often a battle to overcome.
- I have cried, and I’ve learned early that I was never crying alone. That when I sat in my car weeping, there was maybe another mama weeping in a doctor’s office in Toronto, or sitting in their car in Houston banging their fist against the steering wheel and crying angry tears after an IEP meeting. And these mamas were just like me, questioning every choice and decision and praying to God that the time they skipped a therapy, or had the boy wear his AFOs at night wasn’t the cause. Praying to God that their parenting choices and failures weren’t the reasons. And I’ve leaned on these other mamas and their journeys. I’ve reached out to them late at night, and together we become a village. A village of parents that realize that there is no one to blame and there is something special about living this new normal. And this village has been there with me when I accepted that I have a child that will never walk. That I have a child that will never be neuro-typical. That I have a child that may never live on their own. And they have been there when it was the middle of the night and I was scared thinking about my children’s future. This village has taught me how fear can handicap even those who are able-bodied. If you are parenting a special needs child, find your village. There are tons of online support groups for every special need.
- I have been angry. When you have children with disabilities, you are witness to some incredibly amazing people, but you also see the worst. And I have learned that some people are far more disabled than those with a disability. Yes, our world measures ability by physical and intellectual success. I am learning that the qualities of greatness have nothing to do with physical stature or cognitive ability. I am learning to measure the success of my children in traits like kindness, empathy, and compassion. Because if I have a child who grows to be a self-serving and unkind adult, I believe that is a handicap that is far more broken and disabling.
- I have compared. I have compared myself to other moms, and I fall short. I’ve compared my children with other children, and they fall short. And comparison has led me down a very lonely road because it’s a false truth based on perception. My mother once told me that there would always be someone smarter, prettier and more athletic than me, and I couldn’t live my life comparing myself to others. This is so true for my children. There is no magic button, no therapy, no surgery that will suddenly make them anything more than who God already designed them to be. There is such freedom in that statement. It allows me to let them be children. Sounds simple, but it is so easy to make them a project to be fixed. To pick from a menu of therapies and specialists, instead of just letting them be kids. I am learning that my children have their whole lifetime to live as adults,..right now they just need to be little.
- I have learned to laugh. And this is because I have the best poop stories, craziest parenting fails and when we go out in public; we are “that family” and it’s pretty awesome! I wouldn’t change it for the world.
