---
Hi Alene

First I would like to acknowledge the loss of your son, Kevin.. and
say something sincere, I would not pretend to have empathy as I
realizes to have total empathy a person has to go through the same
experience, but if I try and put myself in the position you have
lived through, the only words I could say are, I'm sorry that you or
anyone has to go through such nightmares, forgive me for waffling but
its lovely to meet you Alene!

I think you may of helped a few of us mums with more HOPE for our
kids future then we had yesterday, thank you for your post! please
post again if you have the time, you know what we need...we need for
some one like yourself to put all your experiences with both sons in
a book (no pressure of cause LoL) have you ever considered doing
that? you know I think I would rather read what you would had to say
before any doctors opinions etc

I have honestly not thought of Nathans future as it scares me to
much! It takes all my time to go shopping for his Clothes! for
example all our kids go back to school next week after the summer
holidays and usually you would buy their school uniforms a good four
weeks before they returned to school but I cant do that with Nathan
for fear they may not fit him! so Paul and I went to get Nathan
uniform on Friday gone, and because Nathan is still in the infants
his uniform slightly different from the juniors, so we find that the
polo shirt (with the school badge on it) only go to age 6/7, but
Nathan is in age 10yr old clothes, (even if they did have bigger
sizes it doesn't mean it would fit over Nathans head) and on the
scale of different stresses people have to face each day, I'm sure it
wouldn't rate very high however it is something like that which can
reduce me to tears! so thinking about his future well I don't really
go there! and then I read your post Alene and I cant express just how
much you have help me today to face up to the uncertainty of it all,
I hasten to add that I'm not an emotional person even though I sound
it

I look forward to talking with you again ....Take Care


Sandy & Nathan xxx


In WSSA@yahoogroups.com, "alenecromar" <acromar@...> wrote:
>
> I have been reading with great interest the posts of you young
> mothers. Our Kendall turned 27 this spring and I thought I'd write
> about some of our experiences. (I posted early when this group
> began – see post #6!)
> I'm impressed with how you each are giving such wonderful care to
> your special children and providing for their needs. Our "gentle
> giants" are truly some of the greatest people!
> Kendall was diagnosed at approximately 6 months. This was not a
> difficult diagnosis for his physicians because we had previously
had
> a son, Kevin, who was diagnosed in 1975 shortly after Dr. Weaver's
> initial article appeared in the national journals. (Kevin died of
> leukemia in 1977. He was 3 yrs 9 months and was the size of an
> average 8 year old at the time.)
> We were blessed to have in our life the same physicians from Denver
> as Kevin when Kendall was born in Colorado Springs. They would
> sometimes travel here; or we would go there. Kendall started
> physical therapy at 3 months and then progressed to speech therapy
or
> occupational therapy when age appropriate. This early intervention
> enabled him to do many more things physically than was expected
> initially.
> He was mainstreamed into our neighborhood school with "pull-outs"
for
> therapy. He made friends easily with classmates and teachers! He
> was plagued, however, with respiratory infections and ear
infections
> for many years.
> We have seen orthopedic surgeons to repair his feet that were
> effected by club feet. Over the years, each doctor has "dropped
off"
> of his care as they have not had any more input for his well-
being.
> Some doctors couldn't answer our questions – and often said
that "we
> are writing the book" by living each day.
> Kendall has a great job right now at the airport. He is a "wheel-
> chair attendant" and loves it there! He has had other full time
jobs
> but doesn't think about leaving the airport. He stays really busy
> with Special Olympics – playing basketball, volleyball, swimming,
and
> softball! As a family, this has been wonderful, as our other 4
> children could participate as "partners", too.
> I would be pleased to answer any questions you might have. We
truly
> have been there, done that in so many ways.
> Warm wishes to each of you and your families,
> Alene Cromar
> Colorado Springs Colorado
>