Loving a Child with Down Syndrome

This child. Her name is Eurydice.

Eurydice. Courtesy Cristina Nehring. (c) 2012
Eurydice. Courtesy Cristina Nehring. (c) 2012

The following was written by her mom:

Leaving aside the question of whether one can measure happiness in coffee spoons and, more troublingly, compare the real happiness of an existing child to the potential happiness of a nonexisting child, it is a cliché of developmental psychology that kids with disabilities like Down syndrome often outstrip their peers in joie de vivre. Something about their trust, tenacity, and tenderness—as well as their often uninhibited engagement with other people—seems to equip them for lives that are not darker than the lives of sensitive intellectuals but brighter.

Cut to: Paris, fall 2012. I am sitting next to my cherry-lipped, porcelain-skinned daughter, now 4 years old. I step out of the medical transport van that has ferried us home from her preschool and heave her onto the sidewalk. She giggles and extends two fingers to stroke my cheek. Before the driver can pull away from the curb, I gather her against my heart, draw back a few inches, smile in wonder into her radiant smile, and kiss her face and hair and temples as holiday shoppers stop and stare.

There’s more…

My kid looks like John Franklin and is just as smart and outspoken. His father doesn’t have a very good opinion of Ms. Coulter.

The World of Special Olympics

The following is a guest post in the form of an open letter from Special Olympics athlete and global messenger John Franklin Stephens to Ann Coulter after this tweet during last night’s Presidential debate.

Dear Ann Coulter,

Come on Ms. Coulter, you aren’t dumb and you aren’t shallow.  So why are you continually using a word like the R-word as an insult?

I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow.  I am not either of those things, but I do process information more slowly than the rest of you.  In fact it has taken me all day to figure out how to respond to your use of the R-word last night.

I thought first of asking whether you meant to describe the President as someone who was bullied as a child…

View original post 260 more words

As a Parent

Share

(Editor’s Note: A post by a guest-blogger who is the only person in this world who loves my son Nicolas as much as I do — maybe even a little more than me — his Mom, Anita).

Down Syndrome, Parenting

My son, Nicolas, was born in September of 2006.  I was 43 when I got pregnant.  I had miscarried a few years earlier and the doctors weren’t sure if I could get pregnant on my own.  So when it came time for the screenings for Down syndrome I chose not to do them.  I felt this was the child I was meant to have.

While I was in recovery from the delivery my husband came to tell me that a geneticist had looked at the baby and was sure that he had Down syndrome.  They needed to do a chromosome test but the doctor was pretty certain.  I don’t think I was entirely surprised; something in the sono pictures had looked a little off and one of my OBs had hinted that there were indicators.  But in spite of my suspicions I was disoriented by the news.  There were so many questions and I had so little knowledge. I was tired and overwhelmed and grief stricken.  Friends sent me books that I couldn’t bring myself to read.  I was lost.

Then two things happened that began to change everything for me.  I fell in love with my son.  He was so tiny and so beautiful.  I would let him fall asleep in my arms and I felt so at peace.  In that moment everything was perfect.  Then, when my son was just a few days old, I got a visit from one of the Parent to Parent moms.  Her son attended Stepping Stones and he was three years old.  She brought photos and began telling me stories about her son.  “We went skating this past weekend,” she said.  “He couldn’t really skate very well but I picked him up and carried him around the ice with me.  He said, ‘Mom, I’m flying.’”  The woman told me other things, about her son attending church and fishing with his dad.  But while she was talking about her son on the skating rink I realized that I would have an involved life with my son.  I felt assured that I would do baby things with him and children things with him.

Nicky is three years old now and he is an amazing boy.  He is funny and curious and busy, busy, busy.  Far from being disappointed, I have been delighted and blessed.  He is a special kid in the best sense of the word.  And even though we haven’t tried skating yet, we do everything I would have done with a son who didn’t have Down syndrome.  We go to the playground and make pizza, we read and draw and play with (and eat) Play-doh.  He loves Curious George and Dora the Explorer.  He loves our dog and cats and his sister.  But most of all, he loves running around outside.  That sounds like a three year old boy to me.

The Greatest Baseball Game In 37 Years, (Part 2)

Share

EDITOR’S NOTE: This article was first published this past July. I’m reposting it in joyful anticipation of Game 3 in Philly. Go Yanks!.  (Here’s Part 1).

It was the Spring of 2006. I had accompanied my wife to the OB-Gyn’s office for a visit. An ultrasound had been scheduled along with the regular check up. We had been told that it might be possible, at that stage in my wife’s pregnancy, to discover our baby’s gender. The technician told us that a lot depended on baby’s position and his or her willingness to cooperate.

It’s impossible not to be awed by the incredible sight of your developing baby. Especially when you add to the improbability of it all, the fact that you and your partner were in near-fatal –and separate — car accidents. Surviving those had been, in itself, a miracle. A previous miscarriage made the moment terrifying and mystical at the same time.

The technician is describing what we’re seeing on the monitor in the same monotone cadence of a tour guide that’s seen the same sights hundreds of times:

“And here is the male genitalia,” she says.

“Honey!” my wife yelled.

“What?”

“She just told us it’s a boy!”

Of the torrent of emotions and thoughts that overwhelmed me at that instant, this is the one I remember most clearly:

“Will I have time to take my son to Yankee Stadium before they tear it down?” Continue reading

Worth Repeating

Sarah Palin:

The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil.

Publius counters, “It’s evil, alright”:

It’s goes without saying that this statement is an outright demonstrable lie.  And it’s coming from a former candidate for Vice President of the United States.

But that said, Palin is sort of right on one point — there are people who weigh whether children like Trig are worthy of insurance.  They’re called insurance companies, and they have decided that these children are not in fact worthy of coverage.  That’s because Down Syndrome is a “pre-existing condition.

From a post at Obsidian Wings, August 7, 2009

Bookmark and Share