A Gift

(For those looking for an update: Eon's EEG is scheduled for Wednesday morning. We have not witnessed anymore seizure activity. We'll keep you posted.)

Today, I am incredibly grateful to be Simeon's mom. I'm lying on my bed typing on my laptop and Eon is in the tv room right outside mine. He's playing ball with his big brother, Ben. His pants are falling off and his diaper is sagging, giving him a plumber's crack. 

Any second, he's going to catch sight of me and run in here signing, "diaper" so I'll change it. While in here, he'll invariable sneak a drink of my coke (and cough...he's still not supposed to have thin liquids) and throw a book at me so I'll read to him.

This morning, he raced into church ahead of me and took off toward the stairs to go to his class. He was indignant when I steered him to the bathroom to wash breakfast off his face, instead. He kept signing, "play, play!" Big sister dropped him off at his class. She later told me that he walked up to the gate and said, "Hiiiiiiii!" and signed, "Play!" to a little boy who was waiting there, then lifted his arms to be carried over the gate and into the classroom. Once inside, he gave a backward wave to big sis and joined in the fun.

I was thinking earlier how empty my life would've been had I chosen differently and terminated my pregnancy for Down syndrome. 


Every year, on my due date, there would be tears, sadness, and even guilt. Now, there's cake, candles, presents, and laughter.


If someone with Down syndrome crossed my path, I would inwardly cringe, even as I watched, wondering if they'd confirm my choice by behavior or need. Now, there's an instant delight and immediate connection as we compare notes on our similar trails.

I might feel some measure of relief, along with my pangs of grief, from time to time that my life is not as difficult as I was sure that it would be, but I also would never know what I do now...that courage grows from meeting challenges, that depth comes from embracing hard things, and that love really does conquer all.


He's a miracle, this child of mine. In spite of all odds, he's not only here, he's thriving. He's teaching me what living really means. He's leading me in my quest to discover one thousand gifts, of which he's certainly one.


Without him, my life would have less color. I imagine the winters a little colder and the edges a little harder. The highs of life would be less high and the lows would last longer. There would be less laughter, less passion, less grace...less life.


And I would never know.


What a gift he is to me, this exuberant bundle of designer genes! I am so humbled that God gave me the eyes to see beyond the fear. How I pray that others will see, as well.

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.

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.

Exactly.

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...) 

Passion #3

I have mulled this post over in my mind and written and rewritten it and I'm still at a loss as to how to communicate what my heart so desperately wants to say.

My third passion is to reduce the number of abortions based on Down syndrome. The current numbers stand at 90%. Ninety-percent of women, when shown by amnio or cvs to be carrying a baby with Down syndrome, choose abortion. Keeping in mind that there are many of us who, when faced with indicators of Ds, chose to forego further testing, it is still a staggering number.

I recently read someone's comment that those who choose testing are only those who would abort, anyway, however, I know that's not really accurate. I have read the stories of many, many women who swore going into the test that there was no way they would consider termination and yet, that's exactly what they did.

Why?

Fear mostly. Raw terror. Not having an actual baby to reassure them, they are terrified of the unknown. Most parents of kids with Ds that I have contact with propose that education and exposure are the answer. If we just show the world how wonderful our kids are, people will get it and the fear will go away. I'm sad to say that I don't buy that.

We are a society of convenience and ease. Our sole motivation is to make our lives easier. Easier is better in western civilization. Having a child with a "disability" is not considered easy and therefore, must be avoided.

Though not easier, our lives are better because of Eon. He is a joy and delight. I could repeat this until I was blue in the face, but most people will only take note of the extra appointments, his earlier heart surgery, and his developmental delays. They will rejoice with me that I consider myself blessed..... and be secretly glad that it's me and not them.

How can you possibly convince people that you really love having a child with Down syndrome without it sounding like you are just trying to make the best of a difficult situation?

You can't.

I so wish I could see this as a simple education problem, but I can't because it's not....its a spiritual problem. People always see what they want to see. Therefore, they will see suffering where none is, they will see hardship when none exists, and they will not see joy where it is in abundance in order to justify their behavior and pacify their hearts, so that they can do what is easy and convenient.

There is one who blinds their eyes, who has come to steal, kill, and destroy. They are deceived and no amount of education will prevent their hearts from believing the lies they so readily embrace.

It is not just the unborn that suffer from the deception. I have read the stories and my heart also aches for the women who have chosen wrongly and now must face that choice every day. They are often overcome with grief and guilt. They will never be the same.

Senseless is the only word that comes to mind.

So what do I do with this passion of mine? I still educate and advocate every chance I get. But, I also pray, fervently, for those who are making the choice and for those who have already made it.

Outcomes

I recently read a comment by a woman who is pregnant with a baby with Ds. She has chosen to continue her pregnancy. She wrote, "It's terrible to have to go through this because either outcome (termination or a baby with Down syndrome) is not what you want."

I've been thinking about that for a few days. She doesn't know it, yet, but I think she will one day change her story on that. Simeon, extra chromosome and all, is a very positive outcome, indeed!

My Response to Termination Reasons

I recently jumped into the fray of a discussion on babycenter's Abortion Debate: A Fair Approach. The thread was started by a woman who wanted to explain what late-term abortion was really about. She shared her experience focusing on the fact that all the women at Dr. Tiller's clinic were terminating wanted pregnancies and had received news about horrible medical problems with the baby. The original poster did not share what diagnosis her little one faced. Here is the response I posted:

I cannot pretend to know what it's like to have my baby prenatally diagnosed with a fatal condition. That is a road I haven't walked. But, the majority of terminations for medical reasons are for T21 (or Down syndrome) and that is something I can speak to.

In listening to women discuss why they chose to terminate for Down syndrome, I'm struck by how untrue their reasons are, or at the very least, unknown.

1. My baby wouldn't have a normal life. What is the definition of normal? If it is to walk, talk, read, attend school, have friends, play sports, fight with siblings, grow into a responsible adult with the possibility of attending college and getting married, then this reason is false. We are seeing persons with Down syndrome accomplish this and much more.

2. I couldn't let my baby suffer. Suffer? Really?!? Have you seen the pics of the kids on the Down syndrome board? Have you ever met a person with Ds? This is a group of individuals who embrace life, and expect you to do the same!

2b. My baby had a heart defect and would've needed countless surgeries. An estimated 50% of kids with Ds have cardiac issues, but many of those will never need surgery. Of those that do, the most common problem is an AV Canal defect (also one of the most serious). However corrective surgery for this is so common that it is often referred to as "routine" and boasts a success rate in the high 90s. Heart surgery is not fun. It is scary for all involved, but most of us found waiting for surgery to be much more daunting than the actual event. Pediatric hospitals are experts at pain control and keeping our little ones comfortable. Most of our heart kiddos will not need another surgery and the average hospitalization is 5-7 days.

3. We decided it wasn't fair to the child/children we already have. The first person to congratulate us on the birth of our son was a man whose brother has Down syndrome. He said, "Your children are about to know a love like no other!" Siblings are a gift, regardless of the number of chromsomes they have. There may be more appointments and therapies for the child with Ds, but it's not an either/or proposition. Our youngest is just one of the bunch. He gets therapy; the others get sports or piano lessons.

4. There will be no one to care for our child when we are gone. Because of early intervention and medical advances, it is expected that kids born today with Down syndrome will live independently with minor support. That support can come from friends, neighbors, or social workers. Unfortunately, as the average lifespan for a person with Ds is only 50-60 years, it is possible that you will outlive your child, as well.

Of course, there will be exceptions to what I've written. Life is full of exceptions and completely lacking any guarantees. Those are the unknowns that I referred to. But, we face unknowns with our typical kids every day. I had no idea that my typical daughter would fall from her crib at 2 years old and break her leg, requiring surgery; or that my typical 9 y.o. would struggle with dyslexia and ADD. There was no prenatal test to inform my friend that her 4 y.o would develop a tumor and require the surgical removal of a kidney and countless hours of chemo and radiation.

But, like Down syndrome, the above challenges are just a tiny part of life. We just do what mothers do - we take them one day at a time.