DISCLAIMER - this post has nothing to do with design or decorating, but has everything to do with current life events...
My sister used to be an art teacher at Kalamazoo Christian
high school. She had the privilege of becoming a mentor to a student named
Michael Pinto. Michael took her art classes his Freshman, Sophomore and Junior
years and when he got to his Senior year he did a one on one special art study
with her. Fours years pass so quickly and Michael graduated – college bound! A
few weeks after graduation, for reasons we will never know, Michael left a
party with a friend who was drunk and got in the passenger seat. His friend drove that car into a tree and
Michael didn’t survive. Michael’s parents knew that Sheila had this special
relationship with him and although she didn’t know them very well, she agreed
to speak at his funeral when they asked. Michael had one younger sibling - a 15
year old brother named Paul. Paul has Down syndrome. And here it is. The single
most ignorant (and to me abhorrent) thought that has ever crossed my mind: “Why
did God take the good son?” There it is out in the open for me to be
everlastingly ashamed of. I thought that maybe it would have been better if the
son with the cognitive disability had been the one chosen to go to heaven
first. Not the one with so much “typical” potential.
Through the years following Michael’s death Sheila developed
a close and special relationship with Michael Sr. and Susan Pinto (the parents)
and Paul. Through Sheila I have gotten to hear about how funny, smart, stubborn
and persistent Paul was and is.
Two years after Michael’s death my Mike and I gave birth to
Quinn. Almost to the day, 3 years after that, we had our second son – Gideon,
who was born with Down syndrome. Two boys, 3 years apart, the oldest typical
and the youngest chromosomally enhanced– just like the Pinto family. God works
in mysterious ways.
Cut to 4 ½ years after that - to last week and the very
untimely and heart breaking death of my friend Monica’s son with Down syndrome
– Timmy. Timmy was 12 years old and for me he was a beacon of hope and
potential. When you first have a baby with Down syndrome – seeing older kids/adults
with DS usually scares the crap out of you. It’s a future you don’t completely
understand yet. But Timmy wasn’t scary at all. I loved seeing and talking to
him. He was bold, funny and confident. He could read and was a working actor.
And I saw Gideon’s amazing future potential in him.
Timmy died in his sleep of heart failure. He had had 2 heart
surgeries among other various surgeries and was on his fourth pacemaker. And I
suspect in my heart – that
friends might be thinking (just like the ignorant me):
That while this is tragic –maybe it is for the best because
Timmy was retarded.
Or that however sad this is now– it’s probably a blessing in
disguise because he had heart problems and cognitive and physical delays and
this will be easier for his parents in the long run.
Or that at least Timmy is survived by his two typically
developing sisters and it wasn’t one of them.
And if you did think that – even for a second – how can I blame
you. I did. Society does. Professionals do. The entire flipping world does.
Behind closed doors. Locked away in our private thoughts. Or spoken in
confidence only to our significant others.
The evidence of this is the 91% abortion rate of babies with
Down syndrome after diagnosis in utero. We are taught that anything less than
typical isn’t valuable and is easily disposed of.
But the passing of Timmy and the passing of Michael are
COMPLETELY EQUAL. Timmy with Down syndrome and Michael – college bound - are totally and wonderfully fearfully
made completely EQUAL in God’s sight, my newly liberated sight and their
parents sight.
I want to shout from the rooftops that I don’t care how many
surgeries Gideon has to have or how many years it takes him to read or how many
diapers I have to change – Gideon’s value is just as amazing as Quinn’s. His
diagnosis was not what we expected. And Gideon our little boy is NOT what we
ignorantly expected. If we had done what the 91% do and abort out of our grief
and ignorance I would have lost the most amazing gift God had ever given to me.
Gideon and all kids with Down syndrome are here for a reason. Down syndrome is
the most commonly occurring genetic anomaly since the beginning of time. That’s
not a mistake. I love and appreciate both my kids for their amazing abilities.
But this article is about Gideon. And his abilities are his tenacity, his
amazing ability to love without prejudice and the joy in which he approaches
his life. Things that are sometimes really hard for us typical people.
So how do we change society’s perception, the unspoken
thought that kids who have special needs are worth just a little less? I’m not
sure. But the only way I know I can help is to write about my ignorance and the
child who cured me of it.
