Down
Syndrome
I found out just before Christmas that Paige would be born with Down Syndrome.
I had several ultrasounds
prior to that, and the technicians discovered a 'nuchal fold' on the back
of the baby's neck. It was 1/20th of an inch off the measurement
it should be. So, in the beginning of December I had an amnio.
Waiting for the results was harder than hearing the news. It seemed
like I was held in suspension during the wait.
Like every parent
who receives such news, it seemed as if time stood completely still...I
can hear Dakotah in the background trying to put a Christmas tape in the
VCR, remember going for a walk and seeing all of the Christmas lights,
and feeling like I was watching a movie, that I was completely removed
from reality.
One thought that clearly stands out in my mind was that now I was truly an adult, even though I had a 3.5 year old child, had been married for over 5 years, for the first time, I knew I had to handle this, had to learn as much as I could.
And I remember thinking, that from now on, I will be the Mom of the little girl with Down Syndrome. That I would be tied to it forever. Never 'normal' again.
And then...I began to learn. I scoured the Internet for anything and everything I could read about Down Syndrome. And what I found was that people were living it, that it wasn't the end of the world, that I could do it.
The stories I read
from families who had children with Down Syndrome were incredibly inspirational.
I began to fall in love with these wonderful little children, and not see
just "Down Syndrome," but Tyler, and Sam, and Cassie.
By the time Paige
arrived, I was confident that we would be o.k...that no one could impose
limitations upon us, that we would set our own pace, and make a difference
in how the world viewed Down Syndrome. Nothing was going to rob us
of being a family, we were not going to waste time mourning when we were
celebrating her life.
One Tiny Hand -- One Big Difference
One of the things that having a child with Special Needs has taught me is that always, always, our children are children first. They arrive just as babies, and babies are an incredible way to start people.
Regardless of what
we receive as an unexpected diagnosis, the news is shocking. Suddenly,
we are thrust into a world of terminology, of learning about something
we never thought would be a part of our lives. Sometimes our children
are medically fragile, and sometimes its just learning that they will somehow
be a bit different.
Don't ever let diagnosis overwhelm you so much that you miss a single moment of your child's life. Don't let it rob you of all those incredible firsts, first smiles, first teeth, first steps.
Remember, always, always, baby first.
Paige has changed
my life in incredible, wonderful ways. She has brought me depth of
understanding that I would have never possibly known otherwise. She's
only two years old, and has done some really cool things already.
We have lots of 'extras' -- besides an extra 21st chromosome. We do Physio and Occupational Therapy, Speech Therapy, Infant Stimulation, Sign Language, and a whole host of other things.
I've added a page of infant stimulation ideas and exercises for baby's first three months of life.
Mostly, we are
just a regular ol' family. She's a totally cool kid, with the
sweetest personality. She claps her hands and 'dances' to music,
and loves all the things kids do.
If you are just
receiving the diagnosis of Down Syndrome for your child, please don't be
discouraged. The biggest thing you will face in the beginning is
fear...fear of the unknown. There is so much information available
to us that wasn't available 20 years ago, so much more hope for our children
to lead normal, productive lives.
Most children with Down Syndrome are integrated right into normal classrooms, will go to school with their peers and learn a trade when they get older. We have no reason to believe that they will not have some degree of independence.
You will fall in
love...I can promise you that. You will thank God every day for this
very special person in your life. I was right, I will never be the
same person again...thank goodness.
Please check out some of my favorite links below. There are wonderful sites which will fill your heart with joy and hope. There are medical sites which will give you accurate, factual information about what you might expect for your little one. Take your time and read through them, and if it gets overwhelming, forget about it for a while. There's time to learn, but never enough time to love...
This is one of my favorite sites. Please take the time to read about Sara, and why she became so interested in Down Syndrome. Her site is BIDS.
This site is excellent for medical information. The creator is a doctor, and a Dad to a little boy with Down Syndrome. Be sure and check out the health checklists for kids with DS.
Here are some beautiful calendars with pictures of kids with Down Syndrome on them.
This is a very neat site. They use a chili pepper as their logo. Check it out!
The National Down Syndrome Society is here
Visit the Canadian Down Syndrome Society here here
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