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WOW.
Payton is almost FOUR. Things are so different now.
More different than they have been since we first
started dealing with sma. I guess the biggest thing
is Payton is different. Payton is communicating and
very aware of his surroundings and wants
interaction with his family and has A LOT to say...
This has definitely changed things for me. It feels
that while he still cannot move for the most part,
he is more involved in our day and we of course are
more in love with him as each day passes so we are
pretty hooked at this point.
I used to think that we would “probably not” see a
treatment for Payton and that was just as far as my
hope cloud would reach. Now, I want to see that
treatment so bad, that I could not even force
myself to say that Payton would probably not see a
treatment, at this point in time. That is just not
how I feel anymore. Now, after seeing how tough he
has been for almost four years, and how he hangs in
there and never complains and is always happy, I
feel that he could be lucky. I hope for that
anyway. And I will feel that way from now on.
You may feel that is wishful thinking but I do not.
They are currently working on human drug trials as
I write this and I believe that within a couple of
years they will know if these drugs are feasible in
our children.. I am just praying that they drugs
they are working on are good for sma.. I am filled
with FAITH, and HOPE and the belief that miracles
do happen and that things Could go either way, as
opposed to the “he probably will not be helped”
feeling... We take things one day at a time, and we
don’t think of a future without sma yet, but we
know that would be the greatest thing that could
EVER happen in our lives and in our sons’ life..
THE GREATEST THING EVER.
Payton went to DISNEY WORLD again this year and I
have to say, this trip was so overwhelmingly
wonderful that at times we were brought to tears.
The staff at Disney World is honestly the greatest
trained staff I have ever seen when dealing with
handicapped or sick children.. AMAZING, they were.
Payton was able to meet SOO many characters (he
LOVES meeting characters) and get autographs and
even had a special meeting with about 15 of them
that was set up specially for him! He was able to
go on Its A Small World and they let him go over
and over again until another handicapped person
needed to use that boat and we went back again
later (he never has to wait in any lines) and did
the same thing again—I can’t even express the
thrill of Payton being on his first real ride
ever—We stayed in the “Polynesian” which was just
beautiful and were again strategically staying on
the monorail so as not to have to drive much or be
inconvenienced any more than had to be—It was
prettier than the Contemporary and had much nicer
surroundings with their landscaping décor and
outdoor luau etc.. But we had to walk about a
quarter mile in the open to the monorail each day
back and forth and while that was actually nice at
first, it wasn’t too fun when it was raining.
Fortunately we had a poncho for Payton and his
machines but when staying at the Contemporary,
that is just not an issue.. You stay inside as long
as you stay in the “tower.” Payton also got to see
his first “luau” and they sang one of his favorite
songs from the Lilo and Stitch movie—He loved it.
He stayed awake as long as he could—it ran late—and
not until we finally left did he crash out—He would
wake up early each day waiting and asking to go
back to Disney.. He wanted to see Mickey and Minnie
(which he did a couple times) and he wanted to go
on “rides” and he basically wanted to walk around
Disney all day!! What a great trip!! We really
can’t wait to go back and I hope that ALL sma
children and their families are able to go to
Disney at some point! It is just magical (just like
they say) for kids and their parents. And the
special treatment for handicapped children is just
what it would be in a perfect world. I told my mom
that if everyone treated Payton like they do in
Disney I’d have NO STRESS!!
Stress. Worry. Stress. Overwhelmed. These are daily
feelings—sometimes worse than others but
inescapable feelings—I could go a vacation every
week and sma would still be here. Still be living
inside Payton, running our lives, and cutting short
Paytons. We don’t just deal with emotional
stress—you deal with physical and mental stress
too. Sometimes you don’t know how you can go on—but
for your child—you do. When you are a parent your
baby is NUMBER ONE. Period. That is just the way it
goes and no matter how tough it gets—you do what
you have to do to make it work. For me, for us, not
doing it means we lose the thing we care about most
in this world. That’s not for us. We can’t really
imagine Payton dying and while some people think
and say that he WILL die, we keep alive the hope
that he will beat SMA and that they will find a
CURE. I don’t know how I could be expected to live
each day with the spirit that I do for myself and
for my family and esp. for Payton if I DIDN’T think
they might find a cure for him. Why should we live
each day with a black cloud over our heads—I don’t
want that and neither does Rob. Some people would
say we are in denial, but I feel like I couldn’t be
facing my reality anymore than I do.
I want to say Thank you to those that read this and
those that have gone out of your way in any way
whatsoever to be a part of the solution to this
problem—THE CURE FOR SMA—so many of you have gotten
involved in this and all for the love of these
children and in the hopes that they may be CURED. I
know that we are on the verge of a cure or
treatment for sma—and that is because of
fundraisers like ours, families like yours, people
like you. THANK YOU.
I also want to let everyone know that our benefit
last year was a huge success and we raised almost
$60,000 and we presented a check for $50,000 to the
University of Miami’s Department of Genetics—They
purchased a machine with some of this money that
will make it so that testing for sma carrier status
can be done in south Florida (there are only a
couple places in the country that do this testing).
We will sponsor “sma day” in 2005, where the public
will be able to test for this gene (1 in 40 people
carry it) at UM and we will pay for it.. We do lots
of fundraising throughout the year—This year’s
benefit will be at the Wayne Barton Civic Center in
Boca Raton on Saturday July 24. If you would like
to help, please call Debbie at 954-935-6025 or for
more information please call the same number. Take
care everyone. We wish you lots of happiness &
health for you and yours. |
