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[IP] Re: Contradictions, or is it really that bad?
I have misplaced the original post, but after some thought I felt I must
respond (I am mostly a "lurker" here).
My son was diagnosed at age 3, six months later he was diagnosed with Celiac
Sprue. For those who don't know what that is, no gluten, i.e. no wheat,
oats, rye or barley.
He is now a very strapping 13 year old and has been pumping for 21 months.
My point you ask? He doesn't remember life without D and CS. He does get
frustrated at times when he wants to go out after church with the youth
group and we have no "safe" food on hand. He hates it when teachers pass
out candy bars or pizza for good behavior. ( A practice I abhor-must they
be rewarded because they behave?????) He doesn't like having to get up
early at a sleep-over to check his blood sugar, and the locker room is
tortuous when someone sees his infusion site. But for the most part he has
accepted this disease much better
than I know I would have. Every single day I wish I was the one who had
this disease and not him. I worry about not only the typical things parents
worry about, but what will his quality of life be when he is 20, 30,
40........ What happens when we get full swing into the teenage years??
Will this disease cause him to not be able to have a family? How will he
deal with this when he goes away to college (yiks!!!)
I'm sorry about the pity party, but as all of you parents know, it can be
overwhelming at times.
So...is it really that bad???? yes, I believe it is. But as a family we are
doing the best we can.
And we constantly pray for a cure!
Mom to Brandon , dx'd 3/93, pumping 1/01 with A1C's between 6.3 and 7.2
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