Mommy Guilt & the Disabled Child: A Vague Idea

There's tons of literature out there about this topic. Lots of doctors, therapists, psychologists, psychiatrists, disability & child specialists have all commented and given their 'expert' opinions. Before you read on you should know this: I have read NOTHING on this subject. Just like everything else in here I am writing from experience and from my perspective (unless I say otherwise).

It didn't matter how many times she whispered "it's okay now," all the smiles she forced, or the joy she shared with me as I bathed a newly freed limb from a cast. I always knew that there was something about me that did something to my mother. Whatever that SOMETHING was I could almost hold it in my hands when she let me hold my old cast on the way home from the hospital, I could almost feel it when she gave me sponge baths while I was in a body cast, and I almost saw it along the tight rope line of her lips that quivered when she was just about to cry. I knew, growing up, that this something was a thing only I had, my brothers didn't, not even my dad had this effect on her - no one else in my family could do what I did to my mother. And that isolation is what made things so tangled.

My mother made it no secret that she saw a therapist shortly after I was born. I think that's when the alone-ness and the solitary struggles began to set in, because she also made it no secret that she found the therapy sessions to be "useless. At the end of the day talking about my feelings didn't cure you, you still broke just as many bones, and no one could help me." Since I'm the kid with the disease that no one else in my family has, I know what it feels like to live with something alone. Sure at times it has been difficult and frustrating, but it's a feeling that I was born with and something I continually learn to cope with. It feels natural to me. But I have often wondered many times what it is like to help and love someone alone. To not know whether your next decision will hurt or help? And when things do go awry, who do you turn to to vent? Or for a solution? Which gut instinct will you rely on when the smallest nudge of one domino will cause a series of others to collapse at random? And those collapses could bring such a screeching and visceral pain regardless of the good-nature of the intentions.

So at a young age I learned, in a very literal sense, that actions have consequences. Most of the consequences I had experienced by the time I was six or seven were negative; they were painful and involved a lot of screaming and crying that sounded like it came from a wild animal that had been forced against its nature into shackles. Sitting next to your parents in a hospital waiting room, not being able to move leaves you little else to do but observe (or read); I observed my parents, my mom in particular, fascinated me. Around then, I think, was when I began to realize that just because I was the one living with O.I. on my own, that didn't mean I was necessarily the only one "dealing" with it. I saw how my parents had to help take care of me, had to help me get dressed in the mornings when I had a cast on, had to help keep the cast dry in the shower, and helped me to turn onto my side in the middle of the night. I saw how hard my mother would try to not cry or get too worried as she sat next to me. I saw how she would wince in pain whenever the x-ray technician positioned me wrong, or how relieved she looked when I was finally laying on the table as the fiber glass dried. It occurred to me then that just because she didn't have brittle bones, it didn't mean she couldn't feel just as I was feeling.
From my perspective I didn't understand (and I still don't) what the pain she felt was like, or where it came from. When she winced, what was she wincing from? From looking at me? Or did she feel something too? As the years went by I have long stopped trying to figure that out. But I did recognize that it was pain for her. I also recognized that somehow it wasn't a pain that could heal in the same physical sense that my bones could heal after three months. This was a pain that I think she harbored, internalized, and added to it with every fracture that happened. I'm not sure if these pains were ever healed or maybe they were just forgotten as my fractures dwindled when I got older; but the point is, I hated that. I began to hate that she would feel this agony with me, I despised the fact that I didn't have evidence that my mom's pains healed in a way that I could see on an x-ray, and most of all I was frustrated by its cumulative presence. It wasn't fair! I'm the one with the brittle bones, I should be the only one who has to deal with this! But of course as I continued to get older I knew that this was not the way a family functions, that though the isolation will always be there with effort and communication we could become closer - minimize the isolation. I have often thought that family members are the closest anyone could be to another person while still being completely distant.

I could go on and on and on about this but to be honest this is as much as I have been able to put into words. Everything I have shared here has taken me years to understand and think through. I have pummeled these thoughts into a pulp and it is with incredible shyness that I share them. I hope that someday I'll be able to return to this topic and share some more, but until then that's all I've got for now.

The intangible stuff between mother & child:

  • Whatever tips I might offer here are dependent on so many things I don't know about you. Like family dynamics, the severity of O.I., what the birth was like, etc. But I have always felt that honesty is a good place to begin, and from what I have learned so far in my life feelings are some of the most honest aspects of a person.
  • As the child I will tell you that we are all very intuitive. You might think you're good at hiding it, but chances are you probably aren't. Sorry.
  • I've said this before but I'll say it again: Everyone needs to know it's not their fault. 
  • Guilt can come in so many disguises. What I wrote above is only one form of guilt but I know that there are many others i.e. the guilt of giving birth to a disabled child, the guilt of causing pain, the guilt of causing a fracture, the guilt of knowing you could have stopped a fracture etc. Whatever form it comes in I think it's important to know that it's natural to feel these things/have these reactions, but it's also important to address them. Help your child understand these feelings instead of sweeping them under the rug! Like I said before, your child probably has some sense that something is up even if they can't put it into words yet. 
I'll be honest, I wish I could offer some more tips in this area because I know that it's such a prevalent issue among so many families with disabled children - but I think I also need to recognize that there's somethings in life that I have yet to fully understand myself.

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