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Raising a child with a disability is one of the most
difficult and most rewarding things a person can ever go through.
My son is two and has cerebral palsy. He got stuck during birth and lost
oxygen. After what seemed like forever,
but was probably only 2-3 minutes, the midwives had broken his clavicle and
pulled him out. He wasn’t breathing, was
a whitish-purple, and had a very weak heartbeat. For the first thirty minutes we did not know
if he was even alive. After two days, we
were told that, on a scale of 1 to 10, where 1 was completely normal and 10 was
in a wheelchair unable to eat or speak, he would be an 8. We were devastated. We had spent nine months preparing to have
this perfectly healthy baby boy. My husband
dreamed of playing baseball and soccer with him; I dreamed of helping him with
his first steps and playing with all of his other friends. All of those dreams came crashing to a halt
in a matter of minutes. We felt so alone and devastated. We had friends tell us that “all babies
develop on their own time scale,” and it frustrated us. I wanted to scream, “How can you say
that? How can you possibly understand?” It became a white elephant in the room
isolating us from our friends, and we knew they were tired of us talking about
it. Since then we have worked very hard, through therapies and
surgeries, to get him to be able to do the things we were told he would never
do. He started eating when he was 2
months, started pulling himself up at 2 years, and can say two or three words
as well as saying about 10 in sign language.
He is still nowhere near “normal” though. We had to get a handicapped sticker for our
car because, even though he is only two, and a lot of other parents carry their
two-year-olds, he cannot stand or sit on his own, and there IS NO putting him
down while I do something else. We had
to get a handicapped stroller for him, which looks like a wheelchair but
without the giant wheels. As happy we
all are that he has it, it’s still one more thing that makes us different, and
it’s one more piece of hope gone.
The hardest thing to deal with is the obviousness of his
disability as he gets older. When he was
a year old it wasn’t so unusual that he wasn't walking yet. At two years, it feels pretty bad. He gets really frustrated when we are around
other kids because he wants to be doing the things they are doing, but he
can’t. He can’t play on a playground or
slide down a slide without my help. He
can’t get on a riding toy, or off a riding toy, or continuously on and off a
riding toy, without my help. I have to
be there for him in order for him to play with anything that isn’t on the
floor. It is frustrating for him and
frustrating for us as parents.
One of the awesome things is what the brain does in a
situation like this. When faced with an
injury where parts of the brain are severely damaged, the brain overcompensates
in other areas. He is smart - like,
really smart. He is testing cognitively
as a three year old while his motor skills are stuck at 12 months or less. For example: He figured out how those singing
greeting cards work after he intentionally took one apart (he was 16 months at
the time). That was annoying. His brain
is working to figure things out, but his hands and body won’t do what he wants
them to do. He. Gets. So. MAD. So mad. A lot. As his mother, I am not sure
how to help him. I don’t want to
overcompensate by doing things for him, but at the same time I still want to
help him. Where is that line, and have
we already crossed it?
As difficult as it can be, I honestly believe people who do
not have the experience of having handicapped children are missing something
special. They don’t know what it’s like,
on top of everything else a normal person does in a day, to go through hours of
therapy every day so your child can do a simple task. You learn to celebrate the little things that
most children breeze through. When our
son drank from a straw for the first time we cheered and just about threw a
party!! After three months of intensive
therapy, bribing him with milkshakes and other yummy treats, he finally got it,
and we could move on to the next thing. It was so beautiful! We have a bottle
of champagne set aside for the day he walks on his own, which we probably won’t
be opening for a few years, but I know it will happen someday. We have to know he will, because we can’t
show him how to doubt.
It’s not easy having a disabled child. You break down, you feel hopeless, you blame
yourself, and you isolate yourself from your friends. You get inducted into a new group of people
who are thrown together through unfortunate events. When A was first born, someone I knew sent me
a poem. It’s the best way I have found for describing what it feels like to be
a parent of a disabled child. It still
makes me cry. I'd like to share it with you.
Welcome to Holland
By Emily Perl Kingsley
I am often asked to describe the
experience of raising a child with a disability - to try to help people who
have not shared that unique experience to understand it, to imagine how it
would feel. It's like this......
When you're going to have a baby,
it's like planning a fabulous vacation trip - to Italy. You buy a bunch of
guide books and make your wonderful plans. The Coliseum. The Michelangelo
David. The gondolas in Venice. You may learn some handy phrases in Italian.
It's all very exciting.
After months of eager anticipation,
the day finally arrives. You pack your bags and off you go. Several hours
later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say.
"What do you mean Holland?? I signed up for Italy! I'm supposed to be in
Italy. All my life I've dreamed of going to Italy."
But there's been a change in the
flight plan. They've landed in Holland and there you must stay.
The important thing is that they
haven't taken you to a horrible, disgusting, filthy place, full of pestilence,
famine and disease. It's just a different place.
So you must go out and buy new guide
books. And you must learn a whole new language. And you will meet a whole new
group of people you would never have met.
It's just a different place. It's
slower-paced than Italy, less flashy than Italy. But after you've been there
for a while and you catch your breath, you look around.... and you begin to
notice that Holland has windmills....and Holland has tulips. Holland even has
Rembrandts.
But everyone you know is busy coming
and going from Italy... and they're all bragging about what a wonderful time
they had there. And for the rest of your life, you will say "Yes, that's
where I was supposed to go. That's what I had planned."
And the pain of that will never,
ever, ever, ever go away... because the loss of that dream is a very very
significant loss.
But... if you spend your life
mourning the fact that you didn't get to Italy, you may never be free to enjoy
the very special, the very lovely things ... about Holland.
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What a beautiful writing from a beautiful caring mother.....Surely going to Holland makes us appreciate Holland and what Holland can offer....
ReplyDeleteThank you for sharing your thoughts.