thank you for your e mail. I have received some like yours...and all around
it is really wonderful to see how people adapt to their disabilities, live
(almost) normal lifes, and enjoy a great deal the fun and pleasures life can
offer. This is really uplifting. I see the same for Mandy in her future.
Mandy is in regard of "planning her future" just like any other 7 year old.
"When I grow up I will be..." - so we talk about many
carier-options...."When I get married...I will wear....so we're looking thru
Bridal Catalogues, she just loves this...and has my fullest support, because
I believe...one day she'll have a good degree in whatever she might choose,
one day she might get married. I see her future in this regard just like I
see - and hope - for her 9 year old sister. Typical Mom, right. for now
however we're glad if Sheilah takes good grades home from 3rd grade...and
Mandy finishes her first "read-all-by-yourself" book in first.
Yes, you're right...my feelings were hurt. We do take Mandy out in public,
why hide her? She can have tons of fun, she decides where she wants to go on
weekends, or we make suggestions - and off we go. We got a van and a
lift...so travelling is easier. It was not easy to get all this, I had to
fight, beg, plead...but we've got it, we're managing the high payments on
the van and the horrendous mortage on the rancher style house - 3 miles away
from where Mandy lives. It doesn't matter, Mandy needs us. As for my frust
about her injury and my pain...Mandy does not know. She knows Mommy is
worried about her, but shouldn't every child know this? It's a part of loving
your kid, Sheilah knows the same. Now however to the part, that really upset
me in all the responses I've got so far. Most likely it's all the same
tune...."Kids adapt, she'll have a GREAT LIFE (thanks to machines - hard not
to call a vent and a power chair not a machine), she has a BRIGHT FUTURE (her
future would be BRIGTHER IF SHE COULD MOVE AND BREATH) and I HAVE NO RIGHT TO
BE ANGRY, FRUSTRATED, HURT...after all LIFE COULDN'T BE ANY BETTER, MANDY HIT
THE BIG ONE - WHEN HER NACK SNAPPED IN FOUR PLACES, WHAT AN IMPROVEMENT OF
HER LIFE, WHAT A GREAT BLESSING!!!!!! I know...this is kind of
exaggerated...but inbetween the lines...that's just what it says. Stripping
me of any RIGHTS to be DAVASTATED and ANGRY. Like I said Mandy doesn't know
this, I always keep her upbeat, fight for her rights, advocate for her and
disabled children like her. We play games, we hug and kiss, we go out and
have fun. (This Halloween she'll be a bride, going to a big dance...going
Trick or Treat...just like always in the years before)...but what it boils
down to...and I think all of you have at least to a certain degree agree with
this...and admit to it, once for a change, LIFE IN A POWER CHAIR AND ON A
VENTILATOR, WITH A G-TUBE, AND CATH, CONSTANT UTI'S ...PNEUMONIAS, SEIZURES
FROM THE MEDS, PREASSURE SORE SPOTS STIMPLY STINKS!!!!! This is MY LITTLE
GIRL and I feel as her MOTHER I have the RIGHT to be FRUSTRATED, HURT and I
have the right for THE TRUTH!!!! All the optimism, get-up-and go-attitude,
all the fighting for and with her will not change the fact, that Mandy's life
has been RUINED!!!! YES - RUINED - oh, I know...NOW I'LL GET IT...people
telling me how GREAT and REWARDING life as a disableled person is...I should
be LUCKY AND HAPPY FOR MANDY FINALLY SHE HAS THE OPPORTUNITY TO THE MORE THAN
REWARDING LIFE AS A C-1 QUAD...HOW LUCKY CAN SHE GET? Almost can make one
feel sorry for Sheilah, who did not have the blessing to break her neck,
right?
As for "attacking" Brent - I DID NOT ATTACK HIM....simply pointed out that
there are kids too....ok, ok, those are kids, who adapt easier than adults,
who have been enough written about, who have a BIG AND GOOD LIFE ahead of
them...no need to worry here...I know. Those kids have no voices - YET...but
one day they will (once they grow up - in the meantime they have their
PARENTS. THE SAME PARENTS WHO ARE ANGRY AND HURT ABOUT THE FATE OF THEIR
BABIES. (Honestly some parents on the other hand don't care...they "dump"
their kids - never to be seen again. In VPF - out of 105 children - only
about 5 Parents come constantly to visit...).
I know children adapt easier - I have seen it myself. Christopher Reeves
comes to mind, an active sportsman and famous actor...he has had his hard
times adapting to his fate...perhaps still does - surely so...alone at night
in his bed, listening to the swoshing sound of the vent, watched by video
cameras (he is scared he might "pop" , I guess those are moments when the
disabled adults have to admit that LIFE COULD BE BETTER DESPITE THEIR
REWARDING LIFES AS A DISABLED PERSON. Adults adapt harder, and I think they
build a strong shield around themselves, a shield made out of
self-convincing...understandalbe...I do the same for Mandy. Perhaps, Val, you
should talk to your Mom once and ask her how it feels to see your own child
suffer...yes SUFFER (not being elated with joy to have the head held by a
halo, enduring terrible pains, crying out for help to Mom) ask her how it
feels, ask her if she was angry...how much she cried...and perhaps still
does. You are a Mom yourself...just imagine....
As for myself I WILL NEVER EVER ACCEPT WHAT HAPPENED TO MANDY - BUT I'VE
LEARNED TO LIVE WITH IT!!!!
Sorry I cannot join the cheerful happy mood here on this net-work, sorry I
step on a lot of toes, sorry I offend so many people...sorry I am not
overwhelmed with joy and enthusiasm over the fate of my child...perhaps I am
just the drudgy terrible Mom you all try to tell me....but I am MANDY'S
MOM...and I LOVE HER SO MUCH!!!
So, for now I have to go...Mandy is waiting...I have to go to the OT dept.
and see that he new headrest gets changed again...than I'll go to her school
- and we'll have lunch together.
Bye for now,
Andrea