May 252012

[Alisa’s Note: After posting Sarah’s story about her son, Gideon, just before Mother’s Day (See May 12th), I received an email from her with this story attached.  She explained that this had been “brewing in her head for some time” and recent circumstances had urged her to complete it.]

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 his passenger seat. His friend drove that car into a tree and Michael didn’t survive. Michael’s parents knew that my sister, Sheila, had a special relationship with him and, although she didn’t know them very well, she agreed to speak at his funeral.

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’s parents and with 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 husband and I gave birth to our first son, 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 have a baby with Down syndrome seeing older kids or 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. 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 are 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.

 Posted by at 16:06