During my senior year in high school I had to do a presentation on Down syndrome
as part of my final grade in biology. Maybe some of you don’t know what Down
syndrome is so let me tell you. Down syndrome (DS) or Down's syndrome, also
known as trisomy 21, is a genetic disorder caused by the presence of all or
part of a third copy of chromosome 21. Down syndrome is the most common chromosome
abnormality in humans. It is typically associated with a delay in cognitive
ability (mental retardation, or MR) and physical growth, and a particular set
of facial characteristics. In my presentation I was mainly focusing on children
with this genetic disorder. In a little place at the Adriatic coast where I
have a beach house close to me live two families with children who have Down syndrome.
Both of them are girls, Matea and Lucija. Even though I don’t really like kids,
Lucija and Matea immediately stole my heart. They are so precious. Both of them
have great and strong personalities. Sometimes they can be very stubborn. Down
syndrome symptoms vary from person to person and can range from mild to severe.
Both of my little neighbors have mild forms which gives them the opportunity to
do a lot of activities. In many important ways, children who have Down syndrome
are very much the same as other children. They have the same moods and
emotions, and they like to learn new things, to play and enjoy life. Lucija and
Matea enjoy swimming, dancing, running around and playing other games that
children love. This presentation of mine was mostly inspired by them and is definitely
one of my best because I truly put my heart and soul into it. I could go on
about Down syndrome and how you can tell if your child has it and inform you
about all the medical stuff related to it but instead of that I am going to let
you read a letter from a mother whose child has Down syndrome. The letter is
aimed to other mothers who have just found out that their child has this
genetic disorder. This letter made me cry and be thankful once again for being
healthy.
Dear mom who just received a prenatal Down syndrome diagnosis,
I know how you feel.
Except — unlike you, I was holding my new baby, Kate, in my arms when I
found out. She was wrapped in a blanket, looking up at me as I cried, listening
to the Neonatologist on staff tell me — only minutes after she was born — that she
had Down syndrome. And what that meant.
He said that it meant she had an extra chromosome. And that she would
have learning delays. He said that it meant she was significantly predisposed
to certain medical conditions, including congenital heart defects — and that we
should get her heart tested right away. He said that it meant she had low
muscle tone and may not be able to breastfeed. He said that it meant she would
do things on a different schedule than other kids.
And in those first few days, after hearing those statistics, talking to
doctors and researching online, I thought I knew what it “meant” to have a
child with Down syndrome. And quite frankly, I was devastated.
And so it is with you.
But let me tell you — from one mother to another — those facts are not
what it means to have a child with Down syndrome.
Many of those facts may not even apply to you. Some might, but many
might not. I’ve learned this with all of my children. And I never allow
generalizations to set my expectations. (For the record, Kate breastfed like a
champ and continues to break stereotypes.)
What those facts didn’t tell me about Kate is that — along with almond
eyes and slightly lower muscle tone — she would also have my thick, blond hair
and full lips. That she’s a Daddy’s girl. That she loves peanut butter waffles
and rocking her baby doll to sleep. They didn’t tell me that she’s a nurturing
big sister, a doting little sister — and the star in the room wherever we go.
Those facts didn’t tell me that she would make funny faces and dance
like crazy to Fresh Beat Band. That she loves to sing. And swim. And go to
gymnastics. And unload all of my kitchen cabinets.
What those facts didn’t tell me in all that they “meant” is what she
would mean — to me, to our family, to our friends.
I look back on those first days and I remember the feeling of craving
normality. I didn’t want to hear how life would be forever altered in some big
way and that I would just learn to accept it. I just wanted life to be the way
it was before — routine, “normal.”
Will things ever be normal again? I thought.
And then one day — soon — they were. Except they weren’t like before.
They were better.
Suddenly, the overwhelming facts and fears faded. Because instead of
knowing a diagnosis, I grew to know her.
And so it will be with you.
Because of her life, I have the unique perspective of seeing the best in
the human spirit — and not just in her spirit (though she’s quite spirited!)
but in everyone else.
In a world where it’s easy to view strangers through skeptic eyes, I
have seen an outpouring of love and compassion surrounding her. I have
connected to those I wouldn’t have otherwise. I have had strangers stop me on
the street — just to tell me how beautiful she is.
The world can seem like a scary place for any child, especially those
with a disability. But I have met so many who just want to love her.
I cannot tell you what challenges your precious one might have — just as
I cannot tell you what challenges anybody’s child will have, “special needs” or
not. One aspect of your child’s life just happens to be detectable by prenatal
medical technology. But prenatal testing cannot tell you who your child will
be, anymore than a fuzzy, black and white sonogram can tell you how your child
will look.
When Kate was just a few months old, I went to Target to pick up some
groceries. In line that day, I met the mom of a 19-year-old man with Down
syndrome. And when I shared that my daughter also had Down syndrome, her eyes
softened and she held my gaze with a warm smile.
It was as if we were both part of a secret sorority and she was an old
pledge member. She asked me a few questions and before leaving, softly said the
words that I’ll pass on to you here:
“Welcome to your beautiful journey.”
From my heart to yours,
Lauren
"Although the world is full of suffering, it is full also of the overcoming of it." Hellen Keller
XOXO A.
:)
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