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Re: [IP] parents of children with diabetes

Knowing that diabetes really is "that bad" it what motivates me to do the
best for my child and give him the happiest life possible.  In my view, not
being able to admit just how bad diabetes is, is a form of denial.  If I
were to deny the seriousness of the disease, I would not have the get-up and
go to do all the things I have done to make my son's life as 'normal' as
possible.  When he was first diagnosed just over a year ago, he was put on
an insulin regimen of regular and NPH.  This provided horrible control and
very much limited his lifestyle.  He felt terrible all the time and he was
extraordinarily unhappy.  Because I understood just how 'bad' diabetes is, I
had strength for the tremendous fight it took to get my son a pump and the
best medical support possible to give him the happy, healthy life I want for
him.  Because I understand just how 'bad' diabetes is, I have the energy to
put in hours of work to help find a cure for diabetes.  But because I
understand just how 'bad' diabetes is does NOT mean that I spend my whole
life crying and transferring bitter emotions onto my child.  He is the most
positive person I have ever met in my life.  He is a hero in my mind.  And
he is in NO way "defective."  I don't label him as "diabetic."  I don't
restrict him in anything.  Before I say no to anything, I ask myself if I
would have let him do this before he was diagnosed, if the answer is yes
then I don't stop him now.  Yes sometimes that means letting go of my fear
and just trusting that he will be okay.  Of course, as a parent you have
moments like that with your child whether or not they have diabetes.  He
understands more about his care than I would have ever imagined an 8 year
old child could.
And yes, in many ways his childhood has been robbed from him.  At the age of
7, he very clearly understood that he might die.  Did I teach him that?  No,
being in DKA taught him that.

And yet I still think he has had positive
experiences because of diabetes.  He is an incredibly strong person.  He
understands the beauty of life and does not get caught up in the unimportant
things.  We have met some of the most amazing people in the world because of
diabetes.  And yet, I still don't want him (or any of the rest of you) to
live his whole life with diabetes.

I am sure that all of you who posted to us parents meant well, but just as
you have so eloquently told us that we can never understand what it is to
have diabetes unless we too have been there, you too can never understand
what it is like to have a child with diabetes unless you have been there.

I feel confident that any of the parents on this list are very proactive
people or we wouldn't have our children on pumps.  In general, the medical
community does not jump up and down trying to help us in this effort and in
many cases makes it almost impossible.

Why do I feel the need to state how bad diabetes is?  Because I want a cure
nobody is going to give to a cause that is 'no big deal.'  Though in truth
if I were the one with diabetes I might tend to take that view too.
However, I don't have diabetes- my son does.  And I want the BEST for him,
not "that bad."


----- Original Message -----
From: "Becky" <email @ redacted>
> IF you are a parent who fears their child's future OR feel sad about
> your limitations as a parent of a child with IDDM...PLEASE QUIT!  IF
> your depressed...get some help...share your emotions with this
> list...BUT be aware that your feelng's can be limiting to your child!
> IDDM is only a portion of your child...NOT the whole child!  Look at
> your child as one who has Diabetes and NOT one who IS DIABETIC.  It is
> an attitude.  IF you look at your child as Diabetic and you HATE
> diabetes...how is this attitude going to affect the child?
> Becky LaSpina
> >>>>>>>>>>>>>>>>>>>>>>>>
> becky-- amen, amen, and a thousand more AMEN!!!!! as the child with D in
the end of the
> parent/child with d equation
imagine what a child feels when he sees his mother cry and knows that it is
> of him that she is crying! you have no idea how many times i, as a
depressed diabetic teenager,
> wished that i were dead because of all the anguish my parents went through
over their "defective"
> child (that's what i called myself, and i am sure i am not the only child
w/D who has done so).
> when you go on and on about all that your child will miss, and how he or
she could die, it does
> not make either your child OR any of the diabetics on this list feel any
better. yes, it's a
> terrible thing. yes, we could die. we know, we know, for goodness sake we
KNOW already. we won't
> *ever* forget it, and neither children nor adults with diabetes need to be
reminded of all the
> awful direnesses by the non-diabetics of this world.  if you are
constantly expressing your hate
> for diabetes in the presence of your child, it will make the child feel
bad about herself. like it
> or not, diabetes is a part of who i am, and i cannot express hatred for a
part of my own self.
> if at all possible, take a break from your child's diabetes. teach him/her
how to self-manage, if
> it's appropriate. do NOT micromanage your child's every move, and allow
him/her to begin taking
> responsibility for him/herself. it will do both you and your child a world
of good. if you can
> find anything positive about your child's having diabetes, tell them. it
*still* makes me feel
> better, even now, about having D when someone compliments me on how well i
take care of myself and
> how health-conscious i am. your kids will appreciate hearing this, too.
> i can't say enough how important Dcamp is for kids. it gives them a place
to be the same as
> everyone else, where the *non*-Ds are the different ones. it gives them a
place to complain about
> their loony parents, and about how they feel about D, without judgment.
it's one of those
> wrenching steps that a child takes away from his/her parents and towards
being an independent
> person.
> sorry for the rant, i don't mean it as a personal attack against any one
of you. i have no kids
> and so it is easy for me to be glib and just tell you all to get over it.
i am sure that my karmic
> revenge for all this will come upon me threefold and more once i have my
first child. also i just
> want to say right now that MY parents are the most awesome parents in the
> becky =) (dx'd 1/24/92 at age 10, pumping since 11/21/01)
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