In Loving Memory Of Cassidy "Cassie" Swanson
Sunrise: March 7, 1997 Sunset:
June 9, 2006
(written by her mother – Dana Swanson)
I can’t even begin to express how devastating it is to
know that your 9 year old daughter is living on borrowed time.
But our Cassie Marie lived 7 years 3 months and 2 days longer then
she was “supposed to”. And oh what a time we had. When
a family is faced with the fact that just the act of breathing
is a privilege, boy does that change your life. You learn things,
appreciate things and don’t take a single moment for granted.
It is a bittersweet life. There is so much pain but then…there
is equally the amount of joy. You learn to appreciate things that
others just pass by.
But don’t feel sorry for Cassie, for one thing she would
be devastated if she knew you were sad because of her. She never
could stand to see anyone upset. She had a wonderful life for a
child so fragile and compromised. Our goal was to give her as normal
a life as possible for as long as possible. Everyday she got up,
was dressed, her tiara was placed on her head, and she started
her day. Of course, she was sure to make everyone comment on how
good she looked. Her self confidence and vanity was unbelievable
for a child so handicapped. She swore she was a true princess and
we have no doubt.
She attended school at home with wonderful teachers. She was in
3rd grade just like other children her age. She recently just passed
her 3rd grade CRCT test, which just blew us all away considering
she only goes to school a couple hours, 4 days a week. She traveled…only
those closet to her know how incredibly difficult this is. She
visited many states, attended Disney 3 times, had several zoo trips,
went to the beach for a week every summer, and tons of other as
we called them “roadtrips”. The beach trips were the
ones, right nurse Mary? You should see us strolling down the beach.
Cassie and her sister in their sport utility wagon loaded down
with bipaps, marine batteries, suction machines, oxygen, umbrellas
and so forth. But it was so worth every minute of it. She also
just celebrated her 9th birthday in Disney World and was able to
spend time with all the Disney princesses. It was a dream come
true for her and Skylar. As she said, “The best birthday
She had a passionate love for animals and enjoyed spending time
with her 3 dogs, 2 cats, fish, and a turtle. She went on walks
and spent a lot of time swimming in her pool and sunbathing on
a float. She spent countless hours listening to stories, which
was one of her all time favorites. You could read to her and read
to her and read to her and she would never loose interest and listen
attentively as long as you could last.
With sheer determination she learned to operate a computer better
than anyone and absolutely loved playing on it and watching movies.
She learned to talk. Another milestone that was never supposed
to be. This was one of the biggest blessings. For such a sweet
prissy little girl she had the deepest husky voice. She was able
to vocalize how happy a little girl she was and told you she loved
you over and over. She received and gave more hugs and kisses in
her 9 years than people get in a whole lifetime. She also had such
a wit about her, she was always cracking jokes and would laugh
her little belly laugh and roll her eyes back sarcastically.
A few weeks ago my mother attended a conference in Washintgon
DC with the top researchers and doctors in the field of SMA. They
discussed the recent advances being made in caring for SMA children.
During one of the lectures they spoke of two little girls from
Georgia who had blazed the path for future children. Cassie and
her sister are known as pioneers in the world of SMA. They were
the first to try new methods of respiratory care that allowed them
to live a longer more quality life. Countless other children are
following in their footsteps and living better and longer lives
because of them.
Cassie had wonderful nurses and therapists that meant so very
much to her and took such good care of her. They helped raise her
and she loved you all so very much. We all do. You treated her
as if she were your very own little girl. We never could have made
it this far without your help. You should all be so proud of helping
a little girl beat the odds and have such a precious life.
She had our friends and a community that rallied around her and
her sister from day one, and gave her so much love and support.
We will forever be in awe and appreciation of how so many people
took her and her sister into their hearts and supported them. Our
charity has accomplished so much and has so much to be proud of
because of the love and generosity of all of you.
She had a family who would walk to the ends of the earth for her.
She had the best daddy and papa in the world. They spoiled her
rotten and absolutely adored her. Everyone always commented on
how much her personality was like her daddy’s. She was such
a laid back, easy- going little girl, with a heart of gold. Her
uncle Heath was her biggest hero. She said she loved that crazy
guy and he was always there for her. She was always excited when
uncle Richie’s family came over. She loved Trey and Alec
her cousins, and she adored that baby Macey. She had a grandma – oh
did she have a gamama. All I can say is that facing the toughest
challenge of our lives, my mama looked the disease right in the
eye, lead the way and never backed down, and still hasn’t.
She is a driving force in the SMA world and has made such a difference
with her pure determination and love for all these children. She
has an absolute passion for this cause and I am so proud of her.
Mama, Cassie loved you so very much. As a family I know our hearts
are broken. I never knew that the feelings of pain and loss could
be so great. But as a family we have to stay strong and hold onto
all the precious memories and take good care of her sister.
And the most important person in Cassie’s life was her sister.
Skylar Anne --your sissy loved you more than anything in this world.
There is no way to describe how close they were. They went through
everything together, good and bad. They always got sick at the
same time, usually the exact same symptoms within 24 hours of each
other. Dr. Shelley always knew to go ahead and make out prescriptions
for two. They were the only ones who knew exactly what the other
one felt. They were there for each other and gained strength from
one another. When they were first diagnosed, I struggled with why
did it have to be TWO children. I didn’t understand why.
But what a lesson learned. I know why. They were each others source
of comfort and strength. They rallied each other and I have no
doubt that is the reason why she was able to stay on this earth
as long as she did.
Cassie was what we called a wise old soul in a little body. She
had seen and experienced more in her 9 years than most people do
in a lifetime. To be as young as she was, she had such depth to
her. She had such compassion for people and cared so much. If you
knew her, you are truly blessed. Your life was touched by a true
angel. I feel sorry for the people who should have taken the time
to know her, because they missed out on so much. That is such a
loss for them.
From the time of her diagnosis, we vowed to do everything possible
for her. She had such a will to live. The only way we knew to cope
with such a devastating disease was to do everything we could humanly
do for her, and then ultimately it would be out of our hands. Well,
our precious child got tired, and the time came where it was out
of our hands.
David and I had such a fear of going to the funeral home yesterday
and seeing our daughter. We were also very worried about Skylar.
But when we finally did, we were overcome by an amazing sense of
peace. She was not broken anymore, she was whole. It was as if
this horrible disease had never even invaded her body. She was
perfect and she was free. Skylar said, “Mama, she looks like
a really princess now. Just like sleeping beauty.”
Cassie is our guardian angel in heaven now. She is watching over
her little sister. She always did love to watch out for her. When
we talked to Skylar really late Friday night about Cassie going
to heaven, she asked if we would read her a book about heaven.
She was having trouble understanding, and I had a book that I thought
would help. I sent my mama and daddy to my house to look for the
book. Well, anyone who knows Cassie and Skylar and how they love
books, knows that they have tons of them, so we were worried about
mama being able to find it. However, when she placed her hand in
the cabinet the first book she touched was the exact one we were
looking for. We told Skylar that was her first sign from her new
guardian angel sister.
Cassie would always tell us how she wanted to dance. We would
twirl and twirl her around in her chair. We called her a princess
and she believed that she was one. She always told us that when
she grew up she wanted to be a veterinarian princess and live in
a big white castle.
I can see her now in heaven breathing without the use of a machine,
eating the meals of royalty, and dancing her heart out in that
big white castle.
Fly free with the angels.
Like I always said Cassie, I love you more than the world.
Today we celebrate you and your life.