Re: Jenifer - sibling rivalry issue

July 27, 2005

My sibling dynamics are slightly different: I had one younger sister and one

older who were both SMA-free. In our household, (my older sister) had

two years of uninterrupted love'n'attention before I was born. Then before I

turned one, my baby sister was born. My parents didn't know I was SMA-bound

until I was 18 months old making my baby sister barely 6 months old herself.

From then on my sister, got the " babysister role " when my parents got us

to the ages of 12, 10 and 9. From the ages of 5, 3 and 2 my baby sister and I

were " buddies " only when we weren't fighting over toys, food or Parent's lap.

My parents simply did not tolerate such " whinney " fits from any of us girls.

We were bribed with treats or toys or TV just to stop us from bickering. My

baby sister tell me that she would do anything to avoid being treated like I

was because she saw me as sick or bad. It wasn't until we got older that we

got closer, say 10 and up. This was because we had a common foe, our older

sister .... the " babysitter! " LOL!

Angie

On 2005.07.26 22:58, Jenifer Woody wrote:

> Even if that was rambling it made perfect sense to me We parents don't

> have the same challenges as our kids but by God we DO feel every loss,

> disappointment and illness. Some parents handle it with grace and dignity

> and then there are those of us (yes I include myself) who bungle by and

> hope that we're doing *ok*. I'm glad that I have this group to turn to

> because in my little brain I feel like I can learn from the mistakes of

> other people's parents and not put h too far into therapy! Right now my

> biggest issues are (#1) people who feel like they know what I should *make

> h get used to* (going to the skating rink for parties etc) and (#2) my

> 5 yr old is having some behavioral issues that I personally believe stem

> from competing for attention in our house. h does require a lot of care

> and her little sister has to take care of herself more than a 5 year old

> should. For example, when Krystan was 2 she had to dress herself while I

> was dressing her big sister. It's definitely NOT h's fault, but it's

> not Krystan's either. I think she just has so much pent up jealousy and

> even anger that every time she and her sister are in the same room they are

> fighting. h's mad because of what Krystan can do physically and

> Krystan's mad because h " gets all the attention " . The other problem

> I've pretty much worked out (It's just a matter of politely telling people

> where to shove it! ), but the sibling rivalry issue has me beat. If anyone

> has any suggestions I'd greatly appreciate them. Hugs

> Jeni

>

> <mongomustgolf@...> wrote:

> Regarding the feelings of guilt of a parent passing

> along SMA to their child - I agree with Jen - as a

> parent, you sometimes feel completely helpless to

> protect your child from this disease - you can protect

> them from just about anything else, anything but this

> god damned disease. As any parent could understand,

> seeing your child become injured - in ANY way - be it

> a skinned knee, or in our case, affected by Spinal

> Muscular Atrophy - is worse - - - far, far worse, than

> had it happened to yourself. A common prayer I have

> (and I'm not your overtly religious person who prays

> all the time - but this I do) - is to pray my son's

> disease leaves his body & takes mine instead (though I

> don't expect that to happen, nothing could possibly

> make me happier if it did). I've maintained that if

> some surgery was available to replace my son's damaged

> nerves with my own was available (which unfortunately

> is not) - regardless of what that would mean for me -

> I would do it immediately - just show me where to

> sign. As a parent, my child's life IS more important

> than my own - and I would gladly give it away for

> them.

>

> Sorry if I rambled on there a bit. Difficult to

> clearly express one's thoughts about this...

>

> --- Jenifer Woody <mom2armybratz@...> wrote:

> > First I'd like to say that this is strictly my

> > opinion as the parent of a child with SMA. Since

> > h is only 9 (and 1/2 if you ask her) I realize

> > that I'm not in the same place as your parents, but

> > I do know some of the difficulties. If my opinion is

> > uncalled for since I haven't " been there " yet,

> > please feel free to tell me to shut up

> > I just have to say that it's never ok for someone to

> > make you feel so terrible about basic needs. For

> > most things around here (different toy, craft

> > supplies etc) h does have to ask someone nicely

> > (please and thank you required) just like her sister

> > would. For basic needs (I need to spit, I have to go

> > to the bathroom, suction, cough etc) it's great if

> > she has time to be really extra nice about it, but

> > I'm not a stickler. There's just no sense in making

> > a kid beg for basic needs. If she needs to spit,

> > most of the time " gotta spit " is about all she can

> > manage with a mouth full! You would *think* that the

> > same standards would apply to adults.

> > That being said, I can see where some of the

> > frustration comes from as well. That's not to say

> > that I agree in ANY way with what was said or done.

> > It is easy to get overwhelmed when it seems like the

> > world is going to crash if you're not there to hold

> > it up. Parents now are more willing to ask for help

> > I think, so maybe the next generation will have an

> > easier time. But years of doing everything for

> > everybody have probably completely exhausted and

> > prematurely aged a lot of your Moms. They are tired,

> > cranky and bitter because they refused to ask for

> > help when they needed it. It's not your failure --

> > it's theirs! There is a level of guilt that comes

> > along with passing this gene on as well. When

> > h's having a bad day or something goes wrong

> > around here I do my damndest not to let her see me

> > get upset but I wish SO MUCH that I could take it

> > from her. So here us parents have passed this on to

> > you and there is NOTHING that we can do about it and

> > for a parent that it absolutely

> > gut-wrenching. Those of you SMAers who have kids

> > know that feeling don't you? Even if it's as simple

> > as a skinned knee it hurts when you can't *fix it*!

> > I hope what I'm saying is making some sense. It's

> > late and sometimes I have a hard time getting true

> > meaning across in an e-mail. I *really* hope it

> > doesn't seem like I'm in agreement with those

> > parents who have been... not so nice. My entire

> > intention is only to share my perspective on why

> > they might have wound up that way.

> >

> > Love and Hugs

> > Jeni

> >

> > [Non-text portions of this message have been

> > removed]

>

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July 27, 2005

funny, 3 girls in my family and the oldest is too.

Angie <angie@...> wrote: