Showing posts with label feeling guilty. Show all posts

In previous entries I have written about the guilt my mom may have grappled with, and I have also written about the guilt my friends may have had in the face of accidents.

But what about my own? Do I have any guilt that the O.I. has inadvertently brought on? Yes, plenty. Do I know how to deal with all of them? No absolutely not.

I feel guilty when my friends can't go places they really secretly want to go because it's not accessible for me. I feel guilty that someday my brothers might have a child with O.I. I feel guilty when family vacations are limited to what Sandy can or can't do. I feel guilty when I interrupt a crowded restaurant of diners who need to stand-up and pull in chairs so I can get past. I feel guilty when parents come up tell me "my child is severely disabled and is not nearly as capable as you are.." I feel guilty when I hear about babies with O.I. who are taken away from parents who are accused of child abuse. I feel guilty when I hear about how much my mother cried in my earliest days. The list could go on forever, each statement more absurd than the next.

Many of you are probably thinking, but Sandy none of this is really your fault or anything that you can control! I know, I know. Believe me I've told myself hundreds of thousands of times that friends are supportive. Family will always love you. Strangers are not blaming you. And you had no choice in this odd chain of events, it is what it is.
Yet that feeling exists. It's difficult to explain what it feels like but I will try: It is in the slow wave of red that washes over my face as I get embarrassed, it is in the uncertain eye-twitching awkward glance around the room, it's when I look down at the floor and mumble a useless "I'm sorry", it's tangled in that lump in my throat that I try to shrug away, sometimes it's in the complete blank stare that I give - eyes wide and filled with all the things that I could say but shouldn't need to. The feeling can be microscopic and a mere speck of dust on the tip of an eyelash, or it can be an enormous shadow that flicks across my face like clouds pacing in front of the moon. 

So how do I deal with it? Well that's an unfinished answer because I haven't really figured out how to exactly. Part of it is that I am getting better at my own self-confidence, and realizing my own self-worth. The notion that I am valued and not a free-loading burden presents itself to me in various ways every day. These are the moments when I wish my heart and my head were not such polar opposites; because the fact of the matter is at the end of the day no human being should feel guilty for being. Sometimes those moments of realization happen to snag on the fishhook of my attention, and then it wiggles desperately in front of my face until I think okay already, I get it - I have something else to be proud about! Other times these moments slip between my fingers no matter how many times they fall into the palms of my hands. But like a child splashing in the first real summer rainstorm I am out there, palms open and upward - grinning eagerly for that next opportunity to catch a drop of something sweet and joyous. All it takes is one drop for your entire hand to feel wet.  

In an odd way I am grateful that I am able to feel guilty at times. It means that a.) my friends & family are honest with me b.) that I am able to be honest with myself c.) that I am not living a life of false pretenses. This is the other way I attempt to deal with this sense of guilt that creeps up on me: I recognize that it is there. Sure it's never comfortable and it's never something that I look forward to doing, but every time it pops up I have been able to come away from the incident with more of myself intact than buried.

This post comes from a story my mother used to tell me.

At first she didn't think she would be able to do it. She doubted whether or not she had the mental and emotional strength to care for an extremely fragile and tiny human being, that human being was her infant daughter, me. My mother was afraid of hurting me, of causing more damage, she didn't want to be responsible and probably felt a certain amount of dread and guilt when it came to taking care of me. Although it used to hurt to hear her tell me this, I have come to be able to place myself in her shoes: and I just can't blame her for how she felt. Mentally I have decided I cannot choose to be angry at her, and emotionally there is no longer any feeling of hatred or resentment whenever this is brought up in my family. I can't be angry with her because she wanted to give up on me when I was born. It must have been scary and terrifying and a whole slew of other emotions that ... quite frankly... I hope to never experience myself. (Being able to forgive is a whole different story though, that process has taken many years of my 20 something years of living). And so it was that for much of my early infancy I was sent away, placed in the care of my paternal grandmother.

"All of my paycheck went to babysitting and nannying fees that you and your older brother required" she would tell me. It didn't surprise me that my mother only trusted family members to look after me, her only disabled child. I am also sure that it would have been difficult or near impossible to find a babysitter skilled enough to know what to do with an infant who had O.I.
"I only trusted family members. At least this way everything would still be kept in the family, especially if something went wrong. There was no need to involve other people or strangers. I was tired of hospitals and strange doctors already."

In the re-telling of this story my mother always made it a point to let me know that she came and visited me every opportunity she had.
"Whenever your father had the day off or any free time we would drive over and come see you." I lived at my grandmother's apartment, "all of your furniture and medical equipment was over there. Your crib, your bathtub, the special seat you used, any of your splints and casts -- all of that was over there. You lived there. Most of the time you just lay on the couch and watched t.v., you were quiet unless something was wrong, and other than the broken bones you were a non-fussy baby." For awhile there didn't seem to be any issues. I was content, healthy, and seemingly happy. My grandmother was getting paid and had no complaints, and my mother was able to continue on with her job and career as an accountant.

It happened when she came to visit one afternoon,
"One of your arms wasn't moving and I noticed it right away. You were a baby and normally babies are constantly fidgeting and moving about, everything else was moving except for one of your arms and I realized something was wrong." To this day I find it shocking that my mother could immediately tell that something was wrong, but it is also relieving. It's relieving to know that despite sending me away as a baby my mom was somehow still connected to me, in fact it makes me glad to know that her mother-instincts were still on point when it came to my well-being.
"I told your grandmother that I think something is wrong with your arm and that I should take you to the doctor. But she refused to believe that anything was wrong. She kept insisting that you weren't crying and that you were happily watching t.v. But I knew something wasn't right. My gut told me." Somewhere in the conversations my mother and grandmother were having was a great misunderstanding.

My grandmother interpreted my mother's concern as accusing her of having done something wrong, or worse injuring my arm. But this in fact wasn't at all the case.
"Since I knew you had a brittle bones disease I knew it wasn't because of anything your grandmother may have done. This is just something that happens with you and I am not sure she ever understood, I wasn't blaming her" my mother would say.
"I told your grandmother that even though you were a baby, in your mind you probably knew that it was broken and you had taught and trained yourself to not move something that was broken. I assumed you weren't crying because you had probably cried enough. I believed you had no more tears to show that you were in pain, I thought you were probably tired from having cried so much already."

Every time I heard this story I was always amazed by how much my mother "just knew" and how accurate her "gut instinct" was. This relationship isn't something that I can really describe but I am sure many other OI parents are familiar with this 'feeling.' Although now that I think about it it's probably not just limited to OI parents, probably every parent has this ability -- it's like a superpower, another sense that clues parents into what may otherwise be indescribable for a child. (Pretty cool for a parent! Sometimes slightly annoying for a child!) 
After that incident occurred (and it turned out my mother was right, I did in fact break my arm), she decided to stop sending her children away for other people to care for. She realized that not only did she just know what to do but in fact with practice, and by being around her kids everyday she did in fact have it in her to raise and care for us. Over time and with numerous struggles in the process my mother became less fearful of my limitations and disability. My mom's ability to be my full-time care taker as a child took patience, experience, failures, mistakes, and a strength that grew over time; as her daughter I won't know what else it took but I'm sure there is much more to it than just that. (I MEAN, LOOK AT HOW I'VE TURNED OUT! :-P)


Now that I've written this post I'm beginning to wonder why I felt the need to write it out. I think this is going to be one of those stories I wrote without fully understanding the point myself. There seems to be too many lessons to be learned and those lessons will probably vary depending on the point of view (are you a child with O.I.? Or are you the parent? Or are you the relative? Or are you a caretaker?). I believe that this is one of those stories where the meaning will evolve over time. When I read this in five years I will probably get something very different from the story than what I get now...and that leads me to believe that you probably will too.