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Last time I wrote
Payton was almost 17 months old. Well, let's see...
We had our second annual "so many angels"
benefit in June of 2002 and we raised over
$50,000!! So far, we have raised over 100,000
towards finding a cure!! We have worked really hard
at fundraising these past two years, and have
started our own non-profit called "Paytons
Pals!!" It is VERY exciting to be so involved
and to now be able to help other children suffering
w/this disease. We have just bought a brand new
Tiger 2000 stroller for a family and I can assure
you, this was THE MOST exciting purchase of our
lives. We look forward to another fundraiser in
June of 2003 and many little fundraisers in between
(car washes, garage sales, etc!!)
Payton turned TWO
YEARS OLD on July 14th of 2002!!!! This was BIG,
because this was the milestone birthday!! In all
the textbooks where you can read about sma, the
life expectancy for a type 1 sma child is less than
2 years.. SO, we had quite a thrill celebrating
Payton's birthday with him and 25 of his friends at
the movie theater where we all watched Lilo and
Stitch (one of Payton's all time favorites now).
Channel 10 did an interview w/us right before the
benefit in June and then again at the movie theater
in July. We feel that spreading awareness is KEY to
funding and finding a cure for this disease so we
are ALL about spreading awareness whenever we can!!
Shortly after the
summer, my best friend of 18 years was killed in
car accident in Arkansas. I left Payton alone w/Rob
and my mother (this was the first time I was AWAY
from him) and went to Arkansas where I went to the
funeral for my friend Leah Flynn, and also gave her
eulogy. This was the first event in a procession of
several that sent me into a deep depression for
about 2 months. Our life with sma is not easy by
any means, but we have learned to deal with and
live with in the most positive way, this life. BUT,
I believe that everyone needs down time. Especially
after what I went through. I was just completely
sad, and basically bitter, and angry that we had
been "selected" for this situation and
that Payton would never go to the pool, or swim, or
walk, or run, or hug me... These kinds of things
can really get to you if you let them. I WANTED to
be sad those two months. I thought about how
ridiculous this disease is, and how hard Payton
must fight just to breathe. I was very ANGRY. BUT,
I pulled myself out of it. It wasn't hard either.
After 2 months of feeling sorry for yourself, even
you will get sick of it. But, I did need it though.
I hope it never happens again, because it doesn't
feel good to be so selfish and needy and sad and
sad and sad, but I don't feel bad about it at all.
I think I have earned the right to a few bad days.
Fortunately, Payton never knew anything and I could
at least not show him how miserable I was during
that time. I know that some sma moms might not even
have the "luxury" of feeling bad for
themselves or spending too much time trying to
sleep. I am VERY LUCKY in so many ways, and this is
part of what brought me out of my ugly 2 months...
I have THE MOST
INCREDIBLE MOM in the world. Anyone who knows my
mother, knows this to be true. If it wasn't for my
mom, I truly believe that I would be on some sort
of medication from completely losing it!! My mom is
completely dedicated 100% to being the best grandma
she can be to Payton. This means she comes to my
house EVERY SINGLE DAY to watch for at least two
hours and sometimes longer (depending if I have to
work-doc appt. etc..) and she comes here straight
from her OWN JOB and then while she's here, she
takes care of him as well as I do. She will feed
him, change him, turn him, change his movie, bathe
him, and when she's all done, she sits next to him
and rubs his head over and over like she just loves
him more than anything in the world. My mom is just
"one of those moms" and she deserves the
mother/grandmother of the year award over and over
and over.. I love you mom and so does your little
man Payton and Rob too!! You are the best!!
In ADDITION, to
hitting the mom lottery, I also have a WONDERFUL
HUSBAND. I am not just saying this. He probably
won't believe I am writing this, but Robert has
been AMAZING in his ability to just "keep on
going." He NEVER gets depressed or down about
this situation, he ALWAYS thinks of ways to get
Payton out of the house or just to "see the
Christmas lights." But, it is really so much
more than that. Rob works an average of 12 -16
hours a DAY and this includes weekends, because he
RARELY takes a day off, so that we can survive. He
makes sure that the bills are paid, and even after
a LONG day at work, he will help w/the baby, help
w/laundry, help w/CLEANING. He truly loves his son
and would do ANYTHING for him. I guess that is why
we make such a great couple. We BOTH feel exactly
the SAME when it comes to Payton. We have had some
rough times in the past, but we have learned how to
work together and treat each other w/the love and
respect we both deserve. We have ended up w/one of
the strongest relationships we could have ever
bargained for. I love you honey, and thanks for
being such a FABULOUS DADDY!! (& hubby too!)
SO, with those
two MAJOR players in the fight against sma and in
the care of Payton, I have some REAL HELP. I mean,
if I want to get a haircut, I can. I know sma moms
that CANNOT. I know that sounds crazy, but when you
have a child this fragile, that can turn blue or
code in a matter of second, you have to be on your
toes, and so does everyone that is ever alone
w/him. Who do YOU really trust w/your children???
Well, it is even WORSE for us. Thank goodness, I
have TWO people that I really do trust w/Payton. I
really don't even worry when they are w/him (knock
on wood):)
We have still
gone for the RSV shot every thirty days for Payton,
but we have spent not ONE MINUTE in a hospital
since the g-tube surgery and that was almost TWO
YEARS AGO!!! Again, the weather, Payton not being
around school kids and the RSV has helped, but the
bipap and in-exsufflator are what keep Payton happy
and HEALTHY.
Payton gets
Physical Therapy 3 times a week, Occupational
therapy 2 times a week, Speech Therapy 2 times a
week (we are in the middle of getting a new speech
therapist) and he has a teacher that works with him
once a week. He is a VERY BUSY little boy. He hates
all of these therapies to be quite honest, but he
does enjoy the OT massage and sometimes he likes to
show off to his teacher.
Payton is still
unable to talk, though he does try to say
"uh-uh" for no, and "eh" for
yes. He knows his colors and some shapes and what
movie he WANTS!! He lets us know by eye gaze. I
think that most sma children that are still alive
usually speak at least a little by this age, but I
think the combination of him being on the extremely
WEAK side of type 1 and not having adequate speech
therapy has slowed his progress w/speech down. I
believe that one day he will be able to say mom, or
book, or MAYBE EVEN DAD :) but probably not for a
while.
While Payton does
not talk, he is extremely smart and know how to
manipulate his breathing just enough to make the
monitors go off, so that we all panic and try to
figure out what he wants, and he will keep that
machine beeping until we figure it out. Someone
told me it is called the "terrible twos"
;) He is very aware though, and knows exactly what
he wants and how to get it. I feel that part of the
reason he isn't so "into" yes and no, is
because it is just so easy for him to stop
breathing and believe me, he wins every time...
We were finally
able to get medicaid shortly after my last writing.
This has helped us tremendously because we would
not have been able to afford nursing and we were
completely cut off from nursing from our insurance
company. We are now paying $800 a month for that
policy and could NEVER afford to give it up so we
just hope that they do not continue to raise and
raise and raise to the point that we really just
can't pay it. Wish us luck!! They may not pay for
everything, but they do pay for Payton's RSV shots
(which are $2000 per shot) and they also will pay
for any hospital visits that we MAY have to deal
with in the future... That is pretty much it, but
we need those things.
We took Payton to
Disney in February of 2002 and he had a BLAST!!
Payton loves ANY different scenery, so he was just
thrilled to moving around all day and taking in all
the sights, people, characters, fireworks, etc..
His sats that trip were 100 the whole time and we
NEVER see 100!! SOOOO, we are taking him back in
2003!! It is a HUGE project to take Payton and his
"stuff" ANY WHERE, so you can imagine
what is involved to take him to Disney, but it is
worth every SECOND, to see him enjoy himself. It
could be TWICE as hard, and we would still do it.
I would like to
take a second and thank some people that have
helped me start Paytons Pals, without whom, there
would be no such thing!! ALL OF my board members,
Kelly Ernst, Maria Giles, MY MOM, Regina Nolan,
Jennifer Haws, who have volunteered more time and
energy than you could expect from any human being!!
and of course, our attorney, Adi Rappoport, who
made this happen!! There were SO MANY VOLUNTEERS
this year, but some of you really went above and
beyond and have been there for us through THICK AND
THIN, and I want you to know how much we REALLY
appreciate you!! Dionne, Jen B, Shannon, Lori M.,
Roz, my favorite MIL, Diane, Carole, Michael M, the
entire staff of Coral Springs Outback, etc.. There
are so many of you that have really gone the extra
mile and have really taken Payton on as your own.
We love all of you. Without volunteers we could not
make a bit of difference in the world of sma. It is
with your help that we can help find a cure for
this disease and stop so much senseless death.
Payton is not
"suffering" but he DOES suffer from sma,
a neuromuscular disease that is terminal. As of
right now, there is no cure and NO TREATMENT for
sma. You can call what we do a treatment, but it
ISN'T, we are just managing the symptoms and
effects of this disease. PAYTON NEEDS A CURE!! So,
if you are wondering what you can do to help?? It
is easy. Email me and let me know what you can do..
Volunteer your time, your services, donate to our
live/silent auctions, or just make a donation,
period. There is plenty to be done and EVERY DOLLAR
COUNTS. We are not that far away. Researchers tell
us that we will soon be participating in human drug
trials and I have already signed us up on a
national registry so that Payton may participate in
such things.
We are definitely
tougher and less anxious than we were a year ago,
but no less passionate about saving our son. We are
very realistic, and we know that a cure may not
come in time for Payton.. BUT, WE HOPE EVERY MOMENT
OF EVERY DAY.. THAT IT DOES. He has a life worth
saving. Just look at him and you will agree.
Well, I hope that
this finds you all having a great holiday season.
Christmas is almost here and we are exciting to be
celebrating our THIRD CHRISTMAS w/Payton. We NEVER
thought we'd be getting to share this day w/him.
So, believe it or not, while we used to think how
"unlucky" could we get??!! We now feel
how lucky we really are. And you know what? We
REALLY ARE. WE LIVE WITH AN ANGEL...
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