Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Monday, March 21, 2011

Why? (by Sharon Dzialo)

     Another guest post and so my vacation continues...  I am beginning to like this!  My wife, Sharon, pondered and are her reflections.

    I was having a sleepless night (and, no, it wasn’t my son’s fault – he generally sleeps like a hibernating bear) and those thoughts started – you know, the ones that absolutely consume you until you do something with them.  I mentioned a few of them to my husband and he responded, “hmmm, that would make a good blog. . . “ so here I am. 
     I am not a newcomer to being consumed by my thinking.  I spent five long years writing my book, one story at a time.  Each event, each story would stay with me for days, weeks and months until I would finally get it down on paper. 
     My thoughts  last night, this morning?  I am wondering why (and this is a BIG THOUGHT) we do such a terrible job of taking care of our most vulnerable.     To bring it closer to home – when Adam had his accident his life changed dramatically.  Well, why was there not a reverberating impact experienced by all of those connected to him?  For instance, Adam had many friends.  Why did they (actually, they were young, but what about their parents?) not look at the situation and say, “I have a friend who suffered a severe brain injury.  How must I look at my life and change it dramatically so that I can continue to be his friend.” Or, “ I have a grandson, a nephew, a cousin who had an accident.  How must I change my life to include Adam?  His life changed so those connected to him in any way should have felt the impact and opened their life for the necessary change, right?
     No, instead, in our culture, we allow ourselves to deny, distance, judge, ignore, justify.  You know those lines, “I have to get on with my life.”, “I can’t look at him.  It’s too sad.”  “There but for the grace of God go I” (hate that one),  “If that happened to me or to my kid, I couldn’t handle it.” “I have enough going on in my own life.” “I don’t know what to say or do.” (so I do nothing. . . )
     I watch how we are in the world.  We rally for catastrophes – most recently, the horrific earthquake and tsunami in Japan.   We rally in the moment and, as a member of the human race I am proud in those moments.  We are one.  We give away millions, we save animals, we march for Cancer, Heart disease, Aids.  So what happens when the crisis, the need hits closer to home, like in our backyard?  We don’t rally, we don’t march, we walk away.  We can’t remedy the situation with a check, one visit, one song. We would need to make a lifetime commitment.  And we don’t do it. . .     
     Getting back to the original thought – that reverberating impact.  Can you imagine what it would be like if every person who experienced a long term injury or every child who was born with some kind of disability was surrounded by friends, family and community as a matter of course.   It would be the expected behavior.   These friends, family and community members would allow their life to be changed by the event,  they would open their life to include these challenges?  Remember this line, “it takes a community to raise a child”?  Well, it takes a community to care for our disabled AND it’s a long term job.    People could learn to give and to love with no strings attached.  They would then receive the most precious love – uncensored, grateful and pure.   They would know deep purpose and meaning in their life. 
Why?  Any thoughts?     


  1. What a great post. We experienced the distancing of people from our lives. We had family members who would treat Ryley like he was a piece of mud under their feet. Certain close family members even told me that they couldn't be around us because they felt too sad for Ryley. It made me incredibly angry.
    How great would it be if people did adjust their lives to include our children? I often think that people are just afraid. One of my brothers (who lives overseas and hasn't seen Ryley since he was a baby) often remarks that every time he sees a picture of Ryley he feels as though Ryley is looking into his soul and that he knows people better than they know themselves.
    There is too much competition in society. People are raised trying to outdo each other. There is too much of a focus on perfection and so when people are confronted by anything less than that percieved perfection then they have no idea what to do.
    You are right, it is amazing how people can feel emotional for those suffering a million miles away, yet cannot pop around for a cuppa for those close by.
    Again, great post!

  2. Several things: in cultures where the parents or grandparents live in the same house as the children, where there is a culturaly mandated family bond, you see a different kind of caring in the community as well, this hardly exists in the US in my opinion.

    The grass is always greener on the other side syndrome: We want to look at what is beautiful, better, whatever we don't have but that is accepted by society as worthwhile. Having an extremely mentally and physically compromised child is not high on the list of worth-whiles.
    As corollary to the above syndrome is the traffic accident syndrome where we stare and move on, muttering under our breaths, 'thanks God it's not me'.

    The novelty syndrome: Finally there is the emotional defense of distancing made pragmatic by the notion that with time you get used to having to deal with such a situation, it's level of freshness, its specialness wears off.

    Convenience: Your life may has changed, why should mine? What am I, connected to you somehow by shared experiences, reciprocity or, God forbid, humanity?

  3. I have to admit, I am lucky at the time. Cj is my fathers favorite person on this earth, I have my mother inlaw and my husbands great aunt at my doorstep at any given moment when needed or not. They adore Cj, can't get enough of him. I have five best friends that have changed their lives for Cj. They call me all the time to see if I need help with Ryan or CJ, or just someone to talk to. They are amazing with Cj, they offer to come over just sit with him and hold his hand, it brings me to tears. My girlfriend around the corner calls me every day and her first words are, how is Cj. I have a friend who is a PT from England, she treats Cj just like any other child (in England they treat the disabled like anyone else, truly better than here), I feel lucky and loved.
    It is the people I thought would be the biggest helpers, family members, younger than Nana and Auntie, lots of them. My husband has six sibblings. His sister is so awesome with Cj, but does not live near. It blows my mind that they have NEVER OFFERED any help and they live in the same town.
    I wish I had my family, but I lost my brother and mother to cancer, I only have my father. I have lost almost all my relatives and the ones I have, mostly cousins, live far.
    My Dad, Nana and Auntie are getting old and I am going to be lost without them. At least I do have my close girlfriends. But why not my extended family? We were so close before they found out Cj was disabled. I also ask... WHY?

  4. Dear Sharon,

    You always sum things up perfectly

    "We rally for catastrophes – most recently, the horrific earthquake and tsunami in Japan. We rally in the moment and, as a member of the human race I am proud in those moments. We are one. We give away millions, we save animals, we march for Cancer, Heart disease, Aids. So what happens when the crisis, the need hits closer to home, like in our backyard? We don’t rally, we don’t march, we walk away..."

    My favourite is when people say that they will be there and they don't, they; Quit, Walk away, or bury it under the carpet.

    I have found shame and denial, or more to the point pretending that it (Oatie's condition) doesn't exist, with the DNA linked people...

    Like Lisa, my support network (family) are my friends, and these are friends that we've only known for a few years....

    Lisa, I wish I had your friend from England's experience with the disabled, Yes, England has everything regulated like even people front door steps have to be wheelchair friendly, but society isn't, in fact I have found people here in Canada to be far more loving and caring about anyone and everyone than in England. In England, you could be being stabbed to death, and people will walk on by, fear of self preservation.

    Wouldn't it be nice, like when we moved, we were welcomed by the welcome wagon, I wish there was a Welcome wagon style support for families new to the world of the special needs, a person or people who don't mind being your support network, point you in the right direction for things, be your "auntie" so to speak.

    I volunteer with the Scouts, I'm not the leader in charge, but we'd like to do our adult first aid course (benefits our Scouts and society as a whole), our certificates are all out of date, I can't go on the course, as I don't have anyone who'd babysit Oatie during the day on a weekend. It's 'that' I particularly miss.

    I was at our rec centre at the weekend, and this sums it up for me personally, always makes me laugh as it's ridiculous!, one of the rooms is called the "community room" it's up stairs and no elevator/lift, so if you can't walk/climb stairs you can't go in there!. People who are disabled are not part of our society, UK, Canada or USA for a start... and that's just plain wrong!

    Sharon a beautiful post, and I hope you do write a second book



  5. The culturally mandated family bond that Eric describes may be a distant memory for many of us in the USA, but I have fond memories of it as it played out in my French Canadian family/community in Maine in the 1950’s and 60’s. I was very young then, but my best guess is that it was facilitated and reinforced by the fact that my parents and their adult siblings worked in the same places, usually factories, socialized together and congregated in the same churches. We didn’t quite have communal roof raisings, but people regularly helped each other painting their houses (indoors and outdoors), fixing their cars, and when tragedy struck, they would be there to help out, including taking care of each other’s children (my cousins) for extended periods. The love and support were palpable, and there were no strings attached.

    Maybe our society needs a new fabric to hold it together. One would think that our humanity would be enough as Eric suggested. Following September 11, 2001, I think people made a stab at it with expressions of patriotism (flags), faith (going to church), and reaching out to each other, but the terrorist attacks, although closer to home than other tragedies, was one of those catastrophes that most of us could remedy with a quick fix by doing something short term that could make us feel good. Not that long after September 11, life returned to normal as I recall. The long term commitment that people had made to not take each other and our country for granted was short lived. But I am reminded daily that there are still great people in this world, and sometimes a quick fix (i.e. one Mel’s long distance power hugs and smooches) will do it for me, at least for tonight.


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