Growing up with disabled siblings

family 

By Maria 

Of the six children born into my family, two are disabled.  The oldest child in the family, my brother T, has ADD, motor skill impairment, and various other moderate to severe learning and physical disabilities.  T served a full-time mission, married in the temple, attends college (for the past 11 years), and holds down a regular 40-hour a week (albeit dead end, minimum wage) job.  My younger brother B has Asperberger’s syndrome, an autism spectrum disorder.  Although high functioning on the autism spectrum (B works at Blockbuster 12 hours per week, alphabetizing DVDs), B is also severely intellectually impaired and will always require a full-time, supervised living arrangement (I assume he’ll be with my parents until they die, and then with me or another sibling for the remainder of B’s life).  Without hesitation I can say that growing up with two brothers with disabilities has profoundly influenced my life and who I am. 

Thankfully, compared to a generation ago, disabilities today are more frequently discussed, and accepted, within mainstream society.  In the past, disabled children were often shipped off to hospitals, “schools,” or sanatoriums where they had little to no interaction with their families; today, many disabled children, like my brothers, remain in their homes with their parents and brothers and sisters. 

Relatively little research has been done on the effects of growing up with a disabled sibling.  However, the limited literature available does seem to accurately represent my personal experiences, in that research shows that having a disabled sibling is a “complicated” or “mixed” experience for the non-disabled siblings.  While siblings’ experiences in these types of homes can be challenging, painful, or stressful, living with a disabled sibling can also foster sympathy, responsibility, and growth in extremely beneficial ways. 

As a young child and teenager, the most painful part of having disabled siblings was the cruel ways in which other kids, and sometimes adults, treated my brothers.  Since I was born shortly after T, and we were only a year apart in school, I was acutely aware that T was different from a very early age.  I can still remember the shame and sadness I felt as the kids on the playground would call T “retard,” push him down, trip him, and shun him from their games and cliques.  Together we would run home from school crying, with the mean kids chasing us up to the edge of our driveway.  Even at church, throughout his teenage years T was relentlessly mocked, bullied, and belittled by the kids (and, unfortunately, at times, youth leaders) in the ward.  These experiences were extremely traumatizing for me, even though I was not usually the direct target.

As an adult, the most painful part has been that I mourn for the men my brothers could have become without their disabilities.  For example, although autism disorders often obfuscate emotional connections and intellectual capacity, I occasionally catch glimpses of B’s true personality and intellect.  At times he can be loving, thoughtful, and appropriately humorous.  Intermittently, he will send me emails that astonish me with their sound logic, organized and consistent structure (I’m telling you, this guy should have been a lawyer), perfect spelling, and vocabulary far beyond his IQ.  I mourn for this lost brother every time I see the “B is off in his own world” blank stare or when he has a very public meltdown at Wingers because they put ketchup on his hamburger instead of leaving it plain. 

As a child, I think that having disabled siblings helped me become very responsible and hard working.  As soon as my parents determined I was mature enough, I “babysat” my older brother T while they went grocery shopping or on a date.  Functionally I was (and still am) the oldest child, even though I was the 2nd born (birth order characteristic tables show I have all the personality traits of a 1st born).  Being the “oldest” child, and because T’s motor skill impairments affected his ability to perform physical tasks around the house, I was often expected to pick up the slack and set a good example for the younger kids.  I didn’t always appreciate the extra chores, but looking back on it I can see that I became a much more responsible child than my cousins or friends my same age.  Starting at around age 10 or 11, my parents could go out for the evening and by the time they got back I would have the dinner dishes done, the house vacuumed, and all the kids bathed and in bed.  I felt very driven—not just to be average but to be a super star—at home, school, and church.  Perhaps this was because subconsciously I thought my parents needed it (did I feel that I needed to make up for my older brother’s lack of achievement?), or perhaps I did it for the attention, since it was all too often focused elsewhere.  Regardless of the motivation, I’ve turned out to be a very hard-working, motivated person.  I am certain that having disabled brothers informed this outcome for me personally. 

Another benefit to having a disabled sibling was that I became very sensitive and sympathetic toward people who were different.  I didn’t realize this until my mother pointed it out to me a few years ago, but I recall now that I was the one the teachers (at school and church) would take aside and ask to befriend the new kid, the kid whose parents were divorcing, the kid who wasn’t fitting in, or the underdog.  Because I lived with the bizarre and unusual on a daily basis in my own home, people who were different never scared me.  When your autistic brother can’t stop licking people who come over to the house, the new girl who doesn’t speak English doesn’t even phase you.  Plus, I would always think of my older brother T and how he had no friends, and I wouldn’t be able to bear the thought of this kid being in a class with no friends.  I can see now that my hyper-sensitivity to issues of social justice is directly linked to growing up in a home with disabled brothers. 

On the whole, I am profoundly grateful for my two disabled brothers and for the challenging and rewarding experiences we had growing up together and continue to have now.  All pros and cons and analysis and research set aside, I love my brothers desperately and I know they love me.  More than anything else, I desire to be with my siblings, my parents, and my husband for all of eternity.  The intense bond we share motivates me to repent and improve myself and grow and learn, all so that I can be worthy to be with them forever.  And, in the end, isn’t that the point of having a family?  

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38 Responses

  1. Jana says:

    Maria:
    I _love_ this post. I’m headed out the door right now, so I intend to leave a lengthier comment later when I have more time. Thanks so much for sharing your experiences! 🙂

  2. Rebecca says:

    As the sister of a brother with Downs Syndrome and autism, I loved this post. Growing up with a disabled sibling (I’m the oldest, he the youngest of 5) has been a very mixed, but rewarding experience. Thanks for this.

  3. Deborah says:

    “When your autistic brother can’t stop licking people who come over to the house, the new girl who doesn’t speak English doesn’t even phase you. Plus, I would always think of my older brother T and how he had no friends, and I wouldn’t be able to bear the thought of this kid being in a class with no friends. I can see now that my hyper-sensitivity to issues of social justice is directly linked to growing up in a home with disabled brothers.”

    I absolutely love this post. I’ll try to assemble some cogent response for later — when I don’t have a class about to walk in. For now, thank you for this nuanced portrait.

  4. mraynes says:

    Maria, this was a beautiful post. I think you’re right that growing up with a disabled sibling makes you a much more empathetic individual. None of my siblings are disabled but my father’s oldest brother had severe epilepsy that caused mental retardation. My father is the kindest, most gentle man I know. He loves and accepts people that others ostracize and are unkind to. My father’s example was so important to me growing up and I hope that I have just a little bit of his empathy. Thank you for this post, it gives me something to think about and work towards.

  5. Karen says:

    As the mother of a child with Down Syndrome I thank you for this post. I often worry about how my other children will feel about having grown up with a disabled sibling. Will they resent her? Will they apreciate her and the things they learned from her and because of her? I try to walk the line between givin them too much responsiblity for her and not allowing them enough. Yet, aren’t all siblings responsible for each other in some way? Because they are family? Trying to find that balance, so there will not be resentment, but helping, learning and love. This is a hard thing to do as a parent.
    I hope my children grow up to have the feelings you have- loving and being loved. Wanting to be with each other forever.
    Because you are right, that is the point of having a family.

  6. Caroline says:

    This is wonderful, Maria.

    I don’t have any disabled family members, but I’ve thought about what it would be like to have child who was disabled. I don’t think I can even begin to truly wrap my mind around how difficult, and also no doubt, how soul expanding it could be.

    One thing that did give me a glimpse of this world was a wonderful episode of This American Life on the unconditional love of parents. The second act with the parents of an autistic child was especially powerful.
    http://www.thislife.org/Radio_Episode.aspx?sched=1204

  7. anonymous for this one says:

    Maria, thanks for a reminder about all the ways we can learn from a disabled sibling. This is a timely reminder for me.

    Has your relationship changed as you’ve all reached adulthood? Is it still positive?

    My disabled sister had to move in with my husband and me after trying to live on her own for 6 months. It was really hard on both of us.

    She’s realized in the past few years that she’s not “normal,” but she wants so desperately to be that. I can’t imagine how painful that realization would be, to have to live with your sister who has everything you want–children and a husband.

    I felt guilty for being the sister with everything, but I think I also resented being her caretaker. Her emotional level is around that of about an 11-13 year old, so she’d yell at me when I’d remind her to shower or that she had to call if she decided to not go to work.

    Eventually, she went back to live with my mom, but I know the time will come again when it’s my turn.

    Still, I know my siblings and I are much better people for being raised with her.

    Karen, I think it’s great that you’re thinking about all these questions. Looking back, I think my parents tried (and succeeded) in achieving that balance.

    Ok, enough rambling…

  8. Zenaida says:

    I also grew up with disabled sibling. My youngest sister has downs. I love the lessons I learned from it. It was hard, but worth it, and I’ve gained more patience and tolerance than I think I would otherwise have had. Thanks for sharing!

  9. Kaimi says:

    Beautiful post, Maria. It’s a very insightful window into your experiences.

    We’re told in the scriptures that as we do unto the least of these, we do unto Christ. And who are the least? Often, I think, the handicapped and disabled. How we treat them is how we treat God.

    p.s. Thank you for not posting a cheesy recapitulation of the Mormon rumor one-size-fits-all explanation for disability — that your brothers were clearly super-general-heroes in the pre-existence, and so they didn’t need to get a “normal” earth life.

  10. Kaimi says:

    Oh, and p.p.s.:

    Great job on the site redesign, Deborah. Very snazzy. Great color scheme and layout; striking photos; good navigability — well done!

  11. Anonymous says:

    I’ll be honest – I didn’t really come to terms with having a mentally retarded brother until after his death. (I don’t know what the proper terminology is; my professor father insisted on using clinical terms around family and friends). Every family decision revolved around my brother’s status and how we would address it, because what we did, he did (most of the time; he didn’t go to movies, but he went on vacations and camping and things like that, and we pushed his wheelchair along).

    Every interest my parents had was subverted to the care of my brother and the rest of our large family. I don’t feel that I know them that well, because, well, I never saw what they liked.

    I didn’t come to grips with it until his death, when I was away from home and trying to figure out who I was. And now that I’m a parent, I understand what my parents were doing. But it doesn’t help that I still feel like part of someone else’s family, because the things I enjoyed growing up were not hobbies or interests my parents could have ever given themselves the luxury to enjoy.

    (I was the oldest.)

  12. Anonymous says:

    To “anonymous for this one”, I remember my father telling me ominously that if anything were to happen to my parents and my brother were still alive, I would be the one charged with caring for him.

    You might be able to comprehend how depressed that made my 15-year-old self feel.

  13. Deborah says:

    “Great job on the site redesign, Deborah.”

    Jana gets all the credit for this one — I think she gave up her whole spring break to the task!

    But thanks — we love it, too 🙂

  14. Maria says:

    “Has your relationship changed as you’ve all reached adulthood? Is it still positive?”

    I would say that with every year that passes our relationships improve for the better. While some of this has to do with logistics–I no longer live in the same house with T and B so they aren’t arround to frustrate, annoy, or make me feel guilty on a daily basis–I also think much of it has to do with the fact that we’ve all (including T and B) matured quite a bit. They’re both a lot better behaved than they used to be, especially in public. And, I have more perspective and patience with their bizarre quirks, and I care a whole lot less about what other people think of us. We genuinely enjoy our family time together–all 6 of us are consistently scheming up ways to get together, even though we are scattered across the country.

  15. Maria says:

    Anonymous for this one:

    I think guilt is a very common feeling for siblings of the disabled. We see how mistreated they are in school, church, society, etc., but yet we find ourselves being impatient or unkind to them as well (not to mention at times resentful). This often leads to overwhelming feelings of guilt and self-reproach. I honestly still feel guilty over things I said to my older brother T when we were in junior high and I thought he was cramping my social life. I was never cruel, but I look back and wish I had been nicer at times.

    What helped me put this into perspective was an article I read about how it is completely normal for siblings, disabled or not, to get annoyed with each other, say mean things to each other, fight, etc. It’s all part of the growing up process–an important developmental stage for preparing children for the rest of society. Disabled kids and nondisabled kids alike, it’s a process we all need to go through, and really shouldn’t feel too guilty about.

  16. ML says:

    Maria – I really enjoyed this post. It was very interesting to hear your perspective on growing up in our family and comparing it to my own. In some ways it shocks me how much difference four years and not being the “oldest” can make.

    Although the dynamic of our family changes every year as we add new members by marriage and spread across the country, I appreciate the closeness that we share which I attribute mostly to B and T’s disabilities. I can’t imagine going a week without talking to B (we normally talk every day). I know most of my friends who live over 1000 miles away from their families don’t have this same sort of connection. Although I imagine things could change as we get older and our lives get busier – I have found that regardless of whether I need to bill 80 hours at work or prepare for 3 finals, I always have time to talk with B about his favorite episode of Seinfeld. I think my relationship with B keeps me connected to what is really important – something that I don’t get in the same way from my relationships with our other siblings (probably because I don’t take the time to keep in touch with them as well).

    I don’t want to sugar coat how difficult having a sibling with a disability can be, but I guess when I think about your question – the thoughts I have about growing up with a sibling who is disabled are mostly positive.

    Maria it sounds like you and anon (who were the oldest) ended up with more feelings of guilt than I have – – – I wonder why this is, but I don’t have a good answer.

    I won’t ramble on – but I wonder if there are other middle children out there and whether they have had experiences that are different from their older siblings?

  17. anon mom says:

    I very much appreciated this post as a mom of a bright but troubled autistic boy and two siblings who I worry about. The worries I have are not addressed here though. I’m sure improved social empathy and accelerated responsibility issues will come up later, but today my issues are much younger.

    Did anybody have a disabled sibling who was violent at home, particularly in your first years? Did anybody pick up undesirable behavior from their example? Did anybody get markedly less attention because your parents had to do so much crisis management or 1:1 therapy and appointments with the sibling, or because they were overloaded by stress before they even got to you?

  18. Jana says:

    I have some random thoughts in reply to what’s already been said here:

    1) I was the disabled sibling in my family. I do believe it was hard on my siblings in different ways. It was hard on my older sis because she defaulted to being the babysitter when Mom was with me at the hospital. It was hard on my youngest sis because she lost out on much needed care/attention from my Mom during her formative years. Having said that, though….my sibs each married the most amazing spouses and they have super-terrific kids (those that have kids). I think much of their ability to choose partners and parent came from compassion learned during the years that I was most ill and needed the most care. They are each such sweet and empathetic people.

    2) Yet having said that, I heartily reject the notion that people with disabilities are God’s way of teaching able-bodied folks how to have more compassion. For all kinds of reasons that idea is repulsive to me–perhaps the biggest reason being that I don’t believe my body is different so I can be someone else’s object lesson.

    3) Let me also add how grateful I am for federal legislation (the ADA) that mandates reasonable accommodations so folks with different bodies have the right to access public buildings, get an education, and participate in civic life (like being able to use the loo and having desirable parking spots, and voting). The ADA is amazing stuff. If you are a businessowner, please do all you can to comply. And if you aren’t–please still do all you can to keep access open to restrooms, parking spaces, ramps, etc.

  19. BF says:

    Not to turn this into a family discussion, but I also felt a lot of guilt about a lot of things with B in our family. None whatsoever with T, because I was 10 or 12 before I really made the connection that T was different and maybe something to do with the age gap, but it was very obvious to me starting very young that B was different. I didn’t feel so much of the burden of the family like you did Maria, but I did feel that in elementary school and Jr High that B was my responsibility and that I needed to make sure that he was okay, being only one school year behind him. I’d get really frustrated when he’d get teased and I couldn’t do anything about it or didn’t have the courage to stand up for him. To make matters worse, I don’t know if you remember, but until I graduated high school and became a “Big Kid”, B never would talk to me in the halls at school or acknowledge my presence and I always thought that he hated me. It was so strange how one day just from night to day he started caring about the things in my life and acknowledging my existence when I went off to NYC after graduation. For a few years in elementary school I know that I took my frustration with Ben out on the other kids who had disabilities and abnormalities from the block like Nicky Whitesides, but fortunately grew out of that one quickly.

    The other place where I sometimes feel weird in our family is a lot of times I wouldn’t say that I felt pressure, per se, but more a responsibility to do many of the normal boy thing, knowing that if I didn’t do it, B & T probably wouldn’t be able to. Things like getting my eagle scout. Playing sports. Running with Dad (although, this has become my favorite pass time) Becoming ZL or AP on my mission. Getting the Duty to God award. In a lot of ways, I just feel like I need to be the perfect son to make up for what T&B couldn’t or can’t do. Although not something I dwell on too much, I think in many ways it’s a positive side effect, because it keeps me motivated to accomplish things that I probably want to do anyway.

    I also sometimes wonder what it would have been like to have “older brothers”. I feel like my 3 sisters had so much more of an impact on my development, and maybe missed out of some normal older brother advice or influence. In a lot of ways, I really did feel like the only boy in the family.

    I feel like I get closer to B as time goes on, even though I haven’t lived with him in a while. I feel a lot of guilt now for how much more I could interact with T, but don’t.

    I wouldn’t change either of them for anything in the world and for the good and the bad, know that I’ve come out better because of them and love them both so much.

    Again, sorry for turning this into the family blog spot. Just thought you might be interested

  20. Thank you for your beautiful post. As an active church member with Asperger’s Syndrome, I found that much of what you said rang true. I have been fortunate enough to marry a gal of incredible patience and kindness and have been able to hold down a job with the same employer for nearly 14 years now. However, church is a trial (I stayed home from the General Priesthood Session because being around so many people is overwhelming, and I generally spend the time pacing the halls anyhow). Sometimes I feel like I am a major trial to the ward, but I just try to focus on what I can contribute (my long-term memory is an asset to Gospel Doctrine and Elders Quorum). My mission was a nightmare–“my two-year nervous breakdown”, as I half-jokingly call it, but if I helped others learn patience and empathy, then I am glad to have had the privelege. Plus, my own AS experience has prepared me to help our own Asperger son.

  21. Will Norman says:

    Dear Maria,

    I first want to complement you on a very insightful and moving story about your family nad experiences. I’m a freshman at Ohio State University and am taking a freshman English class with the topic being disability and handicap. It has opened my eyes to how horrible and distorted our views are of the handicapped. I feel some guilt, because I know i have done some of these things and had some of these thoughts as well.

    This class requires me to write a paper about what I have learned. I’m struggling to find sources for a thesis in which I want to prove that the handicapped in our society are often portrayed in different rhetorics (pity, triumph, horror) or just incapable of being “normal human beings”. I was wondering if it would be ok to use this story (Growing Up with Disabled Siblings)? I think you make the point I am trying to make very clearly about how bad society can misread and mistreat those with disabilities. May God bless you and your wonderful family!:)

    Thanks,
    Will Norman

  22. Will says:

    Dear Maria,
    I first want to complement you on a very insightful and moving story about your family nad experiences. I’m a freshman at Ohio State University and am taking a freshman English class with the topic being disability and handicap. It has opened my eyes to how horrible and distorted our views are of the handicapped. I feel some guilt, because I know i have done some of these things and had some of these thoughts as well.

    This class requires me to write a paper about what I have learned. I’m struggling to find sources for a thesis in which I want to prove that the handicapped in our society are often portrayed in different rhetorics (pity, triumph, horror) or just incapable of being “normal human beings”. I was wondering if it would be ok to use this story (Growing Up with Disabled Siblings)? I think you make the point I am trying to make very clearly about how bad society can misread and mistreat those with disabilities. May God bless you and your wonderful family!:)
    Thanks,
    Will Norman

  23. Jana says:

    Will:
    One thing you might want to keep in mind is that the word “handicapped” is considered offensive by many people with disabilities. There are many books written about disability and social stigma. You might want to start with _Extraordinary Bodies_ by Rosemarie Garland Thomson.

  24. Ahmed Mehdi says:

    I wish I could nominate you for an award.I was serfing the net for a real-life story about disability for my EFL students, when I came across yours and I’m wondering how people over there haven’t invited yet to lecture the public at large about ” the bias and stigma” able-bodied-people have about disabled people. As an EFL teacher,
    I read a lot about how others have given lectures about the benefits of readding aloud to children , voluntry work and so forth. They could invite someone with such an experience to speak about people with disabilities. I’d like to express my deep respect to you and wish to hear from you.
    Ahmed.Mehdi@edunet.tn

  25. Ahmed Mehdi says:

    I wish I could nominate you for an award.I was serfing the net for a real-life story about disability for my EFL students, when I came across yours and I’m wondering how people over there haven’t invited you yet to lecture the public at large about ” the bias and stigma” able-bodied-people have about disabled people. As an EFL teacher,
    I read a lot about how others have given lectures about the benefits of readding aloud to children , voluntry work and so forth. They could invite someone with such an experience to speak about people with disabilities. I’d like to express my deep respect to you and wish to hear from you.
    Ahmed.Mehdi@edunet.tn

  26. Linda says:

    maria, i too am a sibling of twin sisters. i went through what you went through as well growing up. now both my parents have passed away at early ages and i am now guardian of them. i love them dearly but i have to say that i wish a forum was out there for us siblings to vent once in awhile. my children are noe grown up and out of the house but i cant have a life of my own since i have the twins to take care of. we do as siblings have more responsibility than the so called “normal” families growing up dont’ we? i can’t really speak with anyone going through what i go through since there are no programs out there for us(the siblings) i admire your story and glad to hear of your strong family bond.

  27. Susan says:

    Maria,
    Thank you for sharing your experience. I have mentally disabled brother that is going through a hard time right now. I am trying to understand him and his situation to learn how to help him. I have been on the internet all day looking for “answers”, looking for “clues”. Sometimes I feel like the medical community doesn’t know how to help him either. I do know that we are all trying. In this process, I am discovering more about my relationship with my brother as well as my other siblings. From reading your post, I was triggered by your mentioned of your “mourning for the man my brother could have become without his disabilities.” That makes me sad as I could identify with your comment. I have seen glimpses of that man in my brother. At the same time I love my brother regardless. But those glimpses hurt now because he is hurting as a result of his disabilitiy and I nor the health care professionals are able to find a quick remedy. I think if he wasn’t mentally disabled, he would not be hurting now.

  28. Kayla says:

    Thank you for this post Maria

    I too have a younger sister who is developmentally disabled and has a multitude of medical issues.I always thought I was alone in thinking of how my sister may have been. The thought alone always made me feel ashamed of myself for thinking in such a way. I am wary of what the future holds and I am nervous that I will one day have to care for her by myself. What makes me the saddest is how caring and loving my sister is towards EVERYONE and how cruel society has been towards her,yet in still it never phases her.

  29. Katie Jo says:

    Maria =] I can relate so much to your post. I’m the eldest sibling in my family and I have twin brothers, one who is disabled (he has Cerebral Paulsey)and I also believe that growing up with a disabled sibling helps your life as a whole in becoming a more understanding, patient, and caring towards others (not saying that those without don’t have any of these traits). But thank you for sharing this, and I enjoyed reading it =]

    *runs back to working on her school project* XD

  30. Libby Perry says:

    I have 3 grandsons-two of them (ages l6 and l4) have muscular dystrophy and the youngest is l2 and healthy. I am trying to understand how hefeels about helping them with such things as pulling up pants in bathroom or hooking up electronic stuff so they all 3 can play computer games.

  31. Paul says:

    please could some of the people posted leave there email address so i can get in touch with you? it was be useful if i could chat to some of you if you have time.

  32. sevey says:

    you always love your sibling, even after they have smacked in the face over a tantrum for french fries. However, I find that parents set the integral role. My parents were overwhelmed by my brothers disability. Their guilt, fear, and shame would shape how I learned to interact with my siblings and some of the feelings I still have. It’s great that your parents emphasized a positive and all together approach to taking care of your siblings.

  33. sister2 says:

    My disabled sister passed away a month ago…she was an identical twin to my other sister and they were the eldest. I can’t imagine how complicated its been for my other sister, being healthy while her identical twin sister was always in hospital, always post op….everyone who came to our house brought the unwell one a present, never the rest (3) of us. My parents were amazing with her but as the youngest by 5 years I feel I grew up “amazingly independent” as my mother says. I don’t feel like I had an option. My mother used to say she would constantly be so busy she would forget she had me. I remember that feeling. I became the golden daughter, the one to achieve and never be any trouble in order to balance out the hard time they had trying to make my sister well. I had no needs, no problems… they really tried to keep her problems away from the rest of us to their endless credit, tried to give the rest of us a ‘normal’ childhood – who knows what is right….I dont. I do know that as my sister got older and her health problems simply degenerated – also mentally with psychosis and depression – living in a nursing home at 48 for elderly people due to lack of places for younger people – my mother made it her absolute life’s mission to do everything for her every day. The day my sister finally passed away my mother stood in the kitchen repeatedly saying she didnt know what she would do with her life now….my other sister finally reminded her she had 3 other children and 8 grandchildren that wouldn’t mind a look in. Somehow it was kind of felt that having a need would never be as great as my sisters, so it was never really ever worth mentioning a bad day, a break up, work problems or relationship problems – nothing would ever be as bad as what my sister was facing and I felt selfish beyond reason to dream of mentioning anything. My marriage broke up 18 months ago and I remember crying to my mother on the phone one night that she had three daughters but really only had one. I had only the once hoped for some time and listening and sympathy but she just changed the subject to my sister and her troubles immediately and I just broke. Any need was never as great as hers. Interestingly now my mother is 80 and having spent most of the day with her today – I love her dearly – I feel like she is trying to get to know me finally. It feels strange and almost embarrassing for me. The day my sister passed away my heart fell out.We had to make the decision to stop active treatment and just do care and comfort. It was the strangest decision as she was quite lucid that day – I fed her dinner after we had made her fate happen – held her hand – told her how much we loved her (she never ever complained ) and tried to sort it out in my head. Thats where detachment and numbness helps. I still wait for the relief I always imagined to come, when the sheer grief will finally vacate my being – when I can not feel guilt and detachment . It’s so complicated this is the first time I have ever spoken of it. I have developed a detachment in relationships that mean everything to me – it’s just a default setting somehow. My sister wanted to be normal. To feel normal, do normal things, not choke at lunch and vomit it up in front of everyone because her throat would not work. She didn’t want to be in a wheelchair with a catheter unable to make conversation after midday because the pain meds made her a zombie by lunchtime. She was delightful. She never complained and always loved me and was so proud of me. And I used to hide everything that I did well at in order to not make her feel bad. It’s oh so complicated. I expect it will take a long time to work it out. My brother (child 3 and only boy) had a very different experience. He was kept fairly out of it. The twin sister moved out to college at 18 the minute she could and has really struggled with guilt all her life. I was 6 years younger so was home with my disabled sister the most. The other thing is that my sister mostly socialised with my mother and her age group friends which made the divide between us as siblings even bigger. Good luck to everyone.

  34. Emily says:

    I found this to be a very insightful and an accurate view of how I feel about my childhood, and how growing up with a severely disabled sister has helped to shape me. I am the eldest of five (16), she’s the second youngest (10).
    Although many people dwell on the negative aspects of having to experience the ignorance, lonliness and pressure that growing up with a disabled sibling can have on the other children in a family, I think that there is definitely something to be said as to how much of an incredibly positive experience it can be. Although you do not get the opportunity to experience a “normal” relationship with your sibling, you get to experience a very special one. Because it can be a lot more challenging to develop a strong connection, it makes it all the more powerful when you do.

    I just wanted to say thank-you for your post, I found it moving. It makes me feel happier to know that there are other people who look upon such a situation/experience in the same way that I do and can talk about it with the same sense of appreciation and dignity that you did. Thank-you.

  35. Caroline says:

    Thank you for sharing your story, Emily.

  36. Diane says:

    For some reason this sentence “As an adult, the most painful part has been that I mourn for the men my brothers could have become without their disabilities. ” just jumped out at me.

    Maybe the lesson we need to learn is that there is no reason to mourn. They are alive, Maybe we are suppose to relish and enjoy the fact that they are the “perfect men” that they were always meant to be.

    I was just reading an article in Religion and Ethics weekly that also talked about this subject with in the context of church. Basically, it stated that given the return of war veterans and the like we need to start making church a more accepting place for people with disabilities so that they don’t turn away.

  1. April 21, 2008

    […] at the exponent bares her soul and relates her life experience about what it is like to grow up with a disabled sibling, and the formative effect it had on […]

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