Wednesday, June 22, 2011

What's it like? (Part 2)

You can find the beginning of this post here.
No one can truly appreciate another's life experience. Who should decide whose life is valuable?

The Angelina Jolies of the world - with their excessive wealth, nanny for every child, globe trotting lifestyle, etc - might consider my life to have less value than theirs. 

We work hard for every dime we bring in (and by "we", I mean Shawn because he certainly works harder than me. And brings in more dimes.:) We have a small, starter home...that we've lived in for 13 years and have squeezed seven children into. We are raising these kids without outside help, nor do we have a housekeeper, a driver, or a chef. We drive vehicles that are over 10 years old. If the fuel pump goes out in the mini-van, we just don't drive it until we can afford to get another. Our vacations consist of camping in nearby parks in our tiny little camper...that leaks. 

But our reality is so much MORE! We have love and laughter (daily). We have great friends and actually enjoy the work or our hands. Our children are a blessing (all of them) and we delight in them! While I prefer 5-star resorts, gourmet coffee, and theatre performances, I've learn to LOVE camping, McDonald's ice cream cones, and the $1 movie. :) My life is full and rich, even though, at times, suffering has been a part of it. (Who has never suffered?)

Wouldn't have been a shame if the Angelina Jolies got to decide my fate based on the first description?

Just because Eon will never father a child, might not marry, go to college, hold a job, etc., does not mean that he will suffer. Just because his life will not be like mine, doesn't mean he shouldn't have one.

How did we come to this - where we can project our hopes for our own lives onto our children to the point that, if they can't meet them, we decide that they must die?!?

We give women, in their darkest hour, a list of all the possible health issues their child might face and ask them to make a heart wrenching choice. They are supposed to take a gamble on what kind of life their baby might have based on a list
It breaks my heart.

The list never told me that my child with Down syndrome would:

* make me laugh every single day
* eat with gusto everything his momma cooks
* learn to use sign language
* wrestle with his brothers
* be everybody's favorite sibling
* be such a great problem solver
* introduce us to so many wonderful people
* love music, Blue's Clues, and pizza
* have a smile that lights up the room
* be so active (and fast!)
* have so few health issues
* charm everyone he meets

No list of diagnoses and potential problems could EVER accurately describe the life of a person! I don't know what the answer is. I do know that education and advocacy help. So does prayer.  I'll continue to do both. I hope you will, too.

Sunday, June 12, 2011

What's it like? (Part 1)

Someone recently asked me what having a child with Down syndrome was really like. She freely admitted that when they were considering having kids, they stated they would terminate if found to be carrying a baby with Ds. She did clarify that, after having kids, she is appalled at having had that thought.

When people ask me about Eon, I often don't know how to describe my feelings toward him. I certainly don't want to present the idea that I love him more than the other kids. I don't. Yet, there is something special/different about my feelings toward him. My friend, Mary Grace, sums it up perfectly in describing her relationship with her own child with special needs. "He has my heart in a way the others don't need to," she says.


I'm sad that the world is sold a bill of goods when it comes to special kids. I've heard women say that they couldn't handle parenting a child with special needs because of finances, lack of support, or because their life was already too complicated. 

These poor women will never know what they are made of. They will always see themselves as weak or as victims.  They will never experience the joy of plunging in and learning the water is neither as deep nor as scary as they once thought. They will never come to the realization that, while sometimes the water is murky, there are moments of great clarity and supreme beauty. They will only know that they ran from fear. And a small piece of them will die, too.

It makes me sad.

Currently, Down syndrome is diagnosed during pregnancy one of two ways: CVS or amniocentesis. Both tests are invasive and both carry a significant risk of miscarriage. There are screenings that are done through a blood test, but they only convey odds of T21 and are incredibly unreliable. The only way to know for sure is to have the invasive testing or wait until birth.

Until now.

All of my friends in the Ds community already know about this, but a new prenatal test for Down syndrome has been introduced in Great Britain. It is a simple blood test given around the 12th week of pregnancy. It is reported to be about 99% accurate in predicting Down syndrome in utero. It should be available in the US by April of next year.

I find this terrifying.

Currently, there is a 90% termination rate for confirmed Down syndrome pregnancies. Keeping in mind there are many women like me who know they have increased odds, but refuse the testing, this number is still unbelievably high. Many, many women are simply surprised at birth to discover their new baby has Ds. They either declined the screenings, or the screenings showed they were at low risk.

What will happen when testing for Down syndrome becomes routine and women discover, perhaps before they've even announced their pregnancies, that they are carrying a baby with Down syndrome? I'll tell you. They will abort in ever increasing numbers. The number of babies with Down syndrome born each year will drop dramatically.

It breaks my heart.

These babies are being targeted for termination. Don't let anyone tell you that this testing is to help expectant parents to prepare. That is a wonderful side benefit for those who choose to carry to term. But that is not the intent of this test. It's just not.

I've heard too many stories of my friends with a prenatal diagnosis (and many with just increased odds) being pressured to terminate. I've read too many comments on articles about this, denouncing the "cost to society" those with Down syndrome represent. (Lest you think I'm being dramatic, I calculated the ratio of positive to negative comments about Ds on a mainstream article. It was around 1:8...for every one positive comment, there were eight negative ones, usually focused on "suffering" and "burden".

(To be continued...

Saturday, June 11, 2011

Update on KJ & Eon

I spoke of our concerns about Keturah in my last post. I'm happy to report that her echo came back normal and she appears to be gaining some weight from the supplementation. Yay! Our follow-up visit is on the 22nd, so we'll see where we go from there.

Eon is doing great! He is 2 years and 4 months, now. He is so typical in some ways...asserting his independence, throwing the occasional tantrum, running away when called, hiding when eating stolen candy, wrestling his brothers, pretending to "die" when shot with a toy gun, etc. 

In some ways, Down syndrome seems more apparent than ever before. We are working hard on "inside voice" as he vocalizes loudly in public sometimes and I cringe. He's responding well to that, and will quiet down when I remind him (unless he's tired or hungry).

He is starting to really imitate more and more signs and we are even seeing him request things not given as a choice. For example, I asked him if he wanted to watch Barney or Blue's Clues. He thought for a minute and signed, "Signing Time". I didn't even know he could do that one! The other day, he heard the door slam and thought it was Shawn. He signed/said, "dada?" I told him that Daddy wasn't home and he signed, "Where?"

He seems to have trouble with the motor planning involved in signs and some issues with proprioception (knowing where his body is in space). Sometimes he'll attempt a sign and do it on the wrong part of his body, or make it look just like another sign when he clearly means the new one. Also, lol, he can't pick his nose. :) He will put his finger up there, then has to move it around to even find his nose, let alone the nostril, and by that time, I've put a stop to his intentions. Cracks me up!

We are adding OT back into the mix in hopes of helping him with these issues. (well, not the nose picking. LOL!)

Gross motor-wise, the kid has got it going on. He has some mad sliding skills. I was so impressed at our first outing to the park and he was able to climb right up to the slide, turn himself around and shimmy down, and then exit the slide to do it again...completely by himself! He's also learning to run and jump in PT. Even without full-on running, that kid is fast!

His receptive language skills are really good. He seems to know what we are saying, even when we wish he didn't. The kids like to quiz him. For example, they'll say random words and then throw in a food item. He'll say, "Mmmmm" every time he hears a food choice, even if it's something we rarely have! He also has very keen ears for the words "nap" and "quiet time" and will immediately start fussing if we utter them. :) 

Here's a pic from a meet-up. Eon had a wonderful time hanging with the princesses! :)