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Thread: Should My Daughter Be Her Brother's Keeper

  1. #1
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    Default Should My Daughter Be Her Brother's Keeper

    Today's blog post is about my daughter, Natalie - and about siblings in general.
    http://www.donnathomson.com/2012/07/...-brothers.html
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Helping with the tube feed while getting to watch tv in the morning sounds reasonable to me. Especially since it allowed you to do other stuff for getting them off to school. I know how crazy mornings can be and if I could 'outsource' some of Caitlin's stuff to allow her to sleep longer while I did other stuff (for getting them out the door and on the bus) I would. I agree it is good to have siblings involved. A few months ago I read Riding the Bus with My Sister and it was interesting how the author didn't know much of anything about her sister's life and what was required for caring for her (exact diagnosis, meeting w/social workers, etc). And they were both adults. If my boys were older I would have them help out a little with Caitlin, right now they're too young to do much. I do have them occasionally read her a book or hold doors for the wheelchair, and the older 2 are in the 'circle of friends' at school where they get to help out in her CD classroom occasionally (which they enjoy!). They haven't yet had the thoughts of how it will be in the future when they are out of the house and Caitlin is older...though one time Tyler said something about that he would take care of Caitlin. I told him that we (Brian & I) would not expect him to do that as that would be a lot of work and we will have provided for her to be cared for somewhere. My ideal would be like what you have for Nick, a nice place very close by where we can be there a lot to monitor and include her in activites. I do hope the boys (when they are adults) would visit her and include her in stuff once in awhile. She is pretty easy to please, a movie, trip for ice cream, walking thru the mall. To me, it would be asking too much of the boys if they had to miss out on activites or stuff due to having to do things for Caitlin. I am pretty lucky with our schedule, her PT is at 7am once or twice a week and her chiro appts are also before school so our afternoons are free for doing typical activites for the boys. They are not stuck sitting around waiting rooms and still get to do their fun things. It works out great! I will cry if I ever lose my 7am time slots!! :) (I've had that 7am time slot with the same PT for over 6 years now!!!)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Interesting blog Donna. I thought about this often when Amanda was here. I wondered if Josh would take on the role of caregiver if anything had happened to us. Amanda has an older half sister also, but I don't think she would have ever been able to "handle" the responsibility of taking care of Amanda. Josh would have done it dutifully without me asking, but I really don't know if I would have wanted that. Especially now, that we are on the other side. Josh was with Amanda all day the day we had our crisis and she never awoke again. I wonder how much damage was done to his heart, self esteem, and psyche knowing he was with her all day and then us losing her right after. I carry the guilt of not being home with her sooner, I wonder if he carries a guilt too.. If something had happened to me and her daddy, I would hope that I would have had the courage to make the necessary arrangements to find her the best home possible. Somewhere loving and nurturing, and open to all visitors for her. I sure do miss that Rugrat.
    Carrie mom to Amanda my new angel 12-29-07.NO LONGER DXD Multicystic Encephalomalcia, Acryptic CAH, Loved to watch mtv hits, wrestling, 3 stooges, Andy Griffith and Spongebob Square pants.

    And Josh 21 year old brain.

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    Donna,

    I enjoy reading your blog posts. They really make me think about the various issues that will come up with our kids. Thank you for sharing your thoughts and your family with us. You are a wise woman!!

    Marcie

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna))))))

    As always, you strike a chord on a concern affecting many parents of SN children, which warrants serious discussion.

    I'm not one of those parents, since I don't have a non-SN child. However, I have known plenty of parents, who are in this situation, and I have observed the variety of ways that they handled it with their non-SN children.

    It's a delicate balance for parents to determine the appropriate level of involvement of their non-SN child in the care of their SN child. How much should parents expect their non-SN child to participate in that care versus allowing the non-SN child to volunteer their caregiving?

    This is why communication from the beginning of the journey is so important. Being attuned to your non-SN child is vital, as you were with Natalie. You allowed her to express her view of all that was happening around her, and you recognized her messages. Now in your relationship with Natalie as an adult, you engage in conversations, which delve deeper into her thoughts and feelings. And, with that well established trust, she opens up to you.

    In addition, you make time for Natalie, which is incredibly paramount in ensuring that she doesn't feel like a second fiddle to her brother. That can happen as well, when most of the attention is focused on the child with the greatest needs, while the other child/ren often need to fend for themselves.

    It is certainly reasonable to discuss future planning needs for your SN child with your non-SN child, and it needs to be addressed, so that everyone is on the same page.

    Finding that perfect balance for each family member to feel included, involved, and appreciated isn't easy.

    An excellent U.S. TV series from 1989-93, "Life Goes On," dealt with many of the challenges in a family with an SN child, in this case, a teenager, who has Down Syndrome.

    http://en.wikipedia.org/wiki/Life_Goes_On_(TV_series)

    Episodes:

    http://www.tv.com/shows/life-goes-on/

    We could certainly benefit from more shows like "Life Goes On," than we can from Reality shows about rich housewives and incessant crime dramas, which are sometimes the same exact thing!

    I hope that more folks will join in on this conversation, Donna. It is definitely an important topic.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    ((((((Carrie))))))

    My heart goes out to you, dear friend.

    Have you and Josh ever talked about that day, your guilt/his guilt, both of your feelings? If not, it might be therapeutic for both of you.

    Like you, if I were in that situation, I would want Jon (or Michael) to be in a loving environment (preferably in their own home, with a careprovider), and for my able bodied child to be involved as an overseer to ensure that care was provided above par. But I wouldn't expect my non-SN child to give up her/his life and opportunities to be a full time caregiver to her/his sibling.

    Thinking of you ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Thank you, dear friends and fellow Mom warriors for your thoughtful and heartfelt comments. Balance is so tricky isn't it? I find it quite amazing that the philosopher and fellow Mom Eva Kittay writes about separating out love and the work that is involved in caring for our SN kids. She defines 'dependency work' as the tasks of caregiving that are required for the person to live and then there's loving care which is separate (but of course we sometimes mix them up in the course of daily life!) But I think the separating out of dependency work is a fantastic contribution to women in our fight to get better services for our kids and also to have a life of dignity ourselves. Because with some of our most complex kids, the dependency work is simply the work of three people, it has nothing to do with how much you love your child. And bartering love vs services for dependency work ends up coercing women (well, most of the time, it's women) into giving dangerous levels of care that are not sustainable. Ahhh how I wish that I could invite you all to my place for a weekend or dinner (with good wine, of course!) for a looonnnggg chat about all this. You are all such valued friends. xo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Thumbs up

    ((((((Donna))))))

    I have such a nice visual of all of us gathering for a lovely meal and conversation at your home.

    I'll bring guacamole, salsa, and veggie fajitas. Or we could go Greek with tzazki sauce, falafel and avocado pita sandwiches, kalamata olives, broiled Mediterranean asparagus, and fine pasta with a Greek oregano pesto sauce. How about Indian food?

    And of course ... chocolate!!!

    I picture us all in our jammies sitting around chatting into the wee hours, even though every one of us could use a solid night's sleep!

    A CN slumber party! Wouldn't that be fun?

    Among the many things for which I am grateful in this life is my imagination. It takes me to wonderful places.

    In my mind, I'm there at your home enjoying a wonderful gathering with our CN family.

    Thanks for that gift.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Oh my goodness, what a fabulous visual and gastronomic image, Rose! YES, a CN slumber party would be so wonderful and your menu sounds absolutely DIVINE!!! My favourite is Greek, just as the menu you created, but I love Indian too. After we finished chatting, we could sit around on pillows and watch "Mama Mia"! I think we should do it. xo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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