Well it finally
happened. The other day I had a first that I knew would eventually happen, it
was just a matter of time. While leaving an appointment a gentlemen in the
elevator with us looked over at Kaleb and I watched the recognition in his face
which followed with, “Oh, bless you guys.” Even though I knew something like
this would eventually happen I was left unsure of how to respond. Part of the
gentleman’s statement might have been geared towards the oxygen and monitor
with Kaleb. Which depending on the extent of his knowledge could have even been
part of what he meant, knowing that those with Trisomy 21 are more prone to
health issues and are evident with Kaleb’s extra accessories. Which in reality the
oxygen and monitor have more to do with his very premature birth having been
born at 28 weeks then with Down syndrome. We don’t always go into the full
birth story, NICU stay, and medical file which are all a part of Kaleb’s story
with every person we meet. I really do not believe this guy meant anything
negative by his statement. As we were talking we discovered a mutual friend with
a daughter with Down syndrome. He began talking about her and it appeared to be
an attempt to make sure we knew and understood that he was friends with her.
However, I was aware
that still he saw Kaleb’s diagnosis first. In the beginning after receiving the
diagnosis, I struggled with this, so I get it. Even though many assured me that
I would not always think or see his diagnosis first, and would tell me that
often Down syndrome moves to the background as simply a condition that is just
a part of him/her. Already at only six months of age, I am experiencing this
and find myself thinking about it less and less. I also know others when they
view Kaleb might first see Down syndrome. My hope and prayer is that they will
not stop there, that they look beyond the diagnosis and see Kaleb.
Later that same day while
talking with big brother Kaden I got out my phone, pulled up an email, and
showed him a picture that his teacher sent me of him playing at daycare. He
thought it was cool that Mrs. Debbie, his teacher, had taken his picture and
sent it to Momma. We looked at it and we pointed out his Kansas City Royals
World Series Championship shirt, his Thomas watch, and how much fun he seemed
to be having. He then proceeded to take his finger trying to move the picture
around and said, “I want to see more.” He then told me about his friends and
other toys in his room. He knew that there was more going on than what the
picture could capture. The picture showed just one snapshot of what was going
on. The picture didn’t include his friends who were playing nearby, it didn’t
show more of the toys around, or the feelings he felt while playing.
It is the same
for many when they see someone who looks or acts differently. They see the initial
picture, a picture that seems different. I have gotten to know Kaleb, I have
fallen in love with the person. When I see Kaleb I see his beautiful eyes and
his irresistible chubby cheeks. I see his spunky personality. A personality
that shows itself more and more. I picture those big smiles I love and our
"talks" we have as he coos at me. As with Kaden's picture I know that
there is more to Kaleb than what meets the eye. That snapshot of his outward
appearance or of his medical equipment doesn't tell the whole story.
March 21st
is World Down Syndrome Day, a day where we recognize those individuals who are
born with a little something extra. It is a day to celebrate those individuals
who so beautifully show us that every life can leave its mark and has something
to offer this world. While having an extra chromosome gives them something in
common, we recognize and celebrate their individual personalities, and varying
talents/abilities. It gives us a day to show the world that there is more to
the picture than what meets the eye.
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