Should we accidentally fall in? I ask Jackie as we
bounce up and down in the round inner tube. We were enjoying the
day with our family on a middle-sized lake, in our Bayliner
ski-boat. Yeah! she says delightedly, giggling at the thought of
scaring Mom and Dad. I look at her beautiful, brown, curly hair
thinking, Mom will kill me if we soak it. Thinking about the
possibility of her frail, limp body in a large mass of water makes
me feel terrible. To play it safe, we continue our ride, screaming
at the top of our lungs, enjoying the sun. Jackies laughter can
fill the inside of a hot air balloon. Her face beams in excitement;
I realize how important it is to me to make her
happy.
Jackie, born in 1984, just 14 months after me, has cerebral
palsy (CP), a muscle disorder demanding someone or something else
to do her walking, sometimes her talking, and even someone to feed
her. Her muscles don’t function correctly for her to walk, people
are too impatient to make out the hearable words she speaks, and if
she wants to eat in sufficient time, someone helps her. I am
thankful Jackie is part of my family, because she has never been
abused, left alone, or mistreated. My parents work hard to insure
she has the wonderful life everyone else is able to create for
themselves. But if I had a choice, I would give up my life and
throw it in her direction, for the satisfaction of my eyes and
heart to see her walk. The joy, excitement, and smiles on her face
burn my soul when I remember she is in a wheelchair.
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Danielle (left) and Jackie Andreassen beam at the camera. |
Jackie enjoys doing many different things. She loves to go to the mall with just me. We have fun picking out cute things for each other, and she tells me if she likes what I try on. Anything I tell her would be cute for her, she automatically agrees. Jackie loves to be like her big sister, which is just one
of the many reasons I love her so much and want to be a good role model for her.
Some people may think Jackie cannot do anything for herself; well, they are completely wrong. She recently wanted a power wheelchair; so my parents spent more on this amazing piece of equipment for her than they did on my brand new, ’99, Chevy Monte Carlo. You may be surprised by this and wonder if it is worth it. Well, it definitely is. Before she had this new chair, someone would always push her around, giving her no individual mobility.
Now she is able to control the chair herself with a joystick,
taking herself wherever her mind wants to go. Watching her do this
is one of the most wonderful things. It’s a true blessing that she
is able to “wheel” around the house when she wants to.
Another of Jackie’s favorite things to do is feed herself. It
becomes a huge mess sometimes, but it makes her happy. My Mom is
always willing to put out her favorite, licorice sticks, and let
her stiff hands pull them off the counter and work hard to maneuver
her arm so the licorice bends into her mouth.
Jackie: My Biggest Fan
Jackie loved to watch me play high-school basketball. She never
missed a game. Sitting in her wheelchair on the sideline, her voice
carried over everyone else’s. I could never seem to hear my coach,
my Dad, or my friends, but her loud, obnoxious, normal-toned voice
projected over every sound in the gym. I always made sure to glance
at her a few times. She may not have known, but in a way her big
mouth, constant screaming, and uncontrollable arm movements
motivated me. Looking at her, I realized she couldn’t do what is
expected of me. She shared with me her hopes of running down the
court in one of our special conversations. In our own sisterly way,
I play the game for her.
After the game, Jackie struggled to maneuver her wheelchair
toward me. Her stiff, crooked hand gradually opened to move the
joystick forward. Within two feet of me, she flung out her spastic
arms, wanting a hug. I put my arms around her, and squeezed tight.
“Good job, Danielle! Way to get tough!” I grabbed a ball and
lightly flipped it onto Jackie’s lap. To catch it, she slammed her
locked arms down on the ball. To throw it back to me, she released
her arms into the air, letting the ball roll off her lap, bouncing
on the floor in my direction.
The greatest thing about game nights was the next day. I read
the journal her aide helped her keep at school; she always
mentioned how well I played the night before. Sometimes she would
exaggerate, saying I scored more points than I actually did. This
was always a wonderful feeling to me; knowing my sister respected
and looked up to me.
In college, I decided to play volleyball–a decision I am glad I
made. Jackie doesn’t get to come to all of the games, but she is
there for 90 percent of them. I still hear her voice over everyone
else’s, and I feel empty when she is not there. Jackie looks
forward to seeing me at every game, which makes me feel so
important. Not every girl has a sister as special as Jackie.
I realize the worst moments are when I feel like punching a
brick wall for her. The staring, the look of confusion and pity on
the faces of people annoys me to the point of frustration and hate,
making me wish Jackie and I could trade spots. It angers me when
people try to be discreet about it. They look up at me and realize
I see them. Most people turn away with a guilty look–at least
that’s what I hope they are feeling; and a few keep staring. Maybe
these people were mad when the alarm clock didn’t go off in the
morning. Then, seeing Jackie, they realize it wasn’t really a big
deal–at least they have the legs to get themselves up in the
morning.
Family Blessings
I don’t understand the disrespect toward the disabled. I end up
convincing myself not to care what others think. As long as Jackie
has a smile on her face, the love keeps pouring my way, like a
river flowing into an ocean.
I look back on some of the stories and realize none of them
would be told if it weren’t for my parents. I thank God he allowed
my Dad to work hard in college and receive a business degree. He
became a very successful businessman through hard work and
dedication to his job. Because he has worked so hard, my Mom is
able to stay at home and get Jackie ready for the day and take her
to and from school. My Mom doesn’t have an easy job either. Jackie
doesn’t weigh much–about 95 lbs.–but she is completely dead
weight. Her muscles are very stiff and she can’t hold on when my
Mom is carrying her, because they are about the same height. My Mom
and Dad both help give her a bath in the morning, and then she goes
back into the bedroom to get ready. By then my Dad needs to get to
work, so my Mom finishes getting her dressed and does her hair and
makeup.
If only the majority of people could see my point of view. No
one is perfect. Maybe Jackie doesn’t look like everyone else, but
neither do I, and neither do you. That is part of what makes us our
own person. To me Jackie is beautifully made. I would never ask for
her to change. In my eyes she is my one and only special
sister.
This year is much different for Jackie and me; I am at college,
so she doesn’t see me every day. I look forward to hearing her
voice on the telephone. “I miss you so much, Danielle!” she says
every time I talk to her. Do you now see why I am so blessed to
have a wonderful sister like this? I do, and I will never exchange
our bond for any amount of money you put in my hand.
Jackie Today: An Update
Jackie, who is now 20, is a very giving person. While in high
school, she did volunteer work at a nursing home and as a greeter
at Wal-Mart. And now that she has graduated, she plans to continue
doing similar work in the community.
On Danielle’s 21st birthday, Jackie arranged for a massage
therapist to come to the house, since Danielle used to have some
back pain when playing volleyball and would get massages. But a
very special gift was a book saying “Sisters are the best friends”
and other nice things about being sisters. The book not only
included photos of the two of them from babyhood up to the present,
“but also 21 things that she liked best about me,” said
Danielle.
“Bowling is Jackie’s favorite thing,” said Danielle. When Jackie
goes bowling, she uses a gadget that helps her roll the ball. “We
haven’t quite mastered that yet,” laughed Danielle. “But we have a
lot of fun.”
One of Danielle’s funniest memories of Jackie was when their
grandpa made a sled that Jackie could use. “We called her ET’
because she looked so cute all bundled up.”
Danielle graduates from Simpson College, Indianola, Iowa, in May
2005 and plans to become a CPA. Danielle plans to stay in the area
after graduation, “since family is very important to me.” Family
also is important to her boyfriend, Ben Ramsay, and Jackie
definitely approves of him. “In fact, Jackie joked that if Ben
weren’t my boyfriend, she would take him in a minute,” Danielle
laughed.
“Jackie is a very social person; she loves to be with people,”
said her Dad, Jim. “She basically does everything with us–goes out
with us, travels with us.
“Although it is sometimes a difficult thing to care for someone
with a disability, it is surely well worth the effort,” he
continued. “We cannot imagine Jackie not in our lives.”