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...) 

The Tsunami

When it comes to emotional topics, I like to write a blog post after I've reached a conclusion, when the emotion is past and I feel I've resolved something within my mind. 

But my emotions are running high right now and I feel there is no solution. There will be no tidy package with a neat little bow for this crisis.

My heart literally aches over the 92% termination rate for Down syndrome pregnancies. I am burdened for the women who have made the choice to have their young killed out of fear, ignorance, and, yes, selfishness. I am burdened for the lives of children eliminated and tossed away simply for being different than what was expected. 

And I am terrified for the many yet to be targeted. A test is coming that will guarantee the almost complete annihilation of a whole class of people. Right now, many women give birth to babies with Down syndrome unaware. They are surprised to discover soon after birth that their child is sporting an extra chromosome. While they are usually shell-shocked initially, love for their child saves the day and they come to learn that life with an extra 21st chromosome is a life worth living. Most eventually discover that they wouldn't change a thing, even if they could.

Soon, a surprise like that will be almost unheard of. A simple, non-invasive, accurate blood test will be available within the year to diagnose Down syndrome during pregnancy. Some women will still choose to continue the pregnancy. Most will not.

You may think I am being overly dramatic, but I have heard too many mothers of children with Ds, honestly confess that they are glad they didn't know. They don't know what they would've done had they had a prenatal diagnosis. I have read too many negative comments following news articles about the new test to pretend like it is good for women to have "all the information available to them." And I have read too many stories from women who were pressured to terminate in subtle and blatantly obvious ways from the healthcare professionals treating them, to believe that these women are being given accurate and current information and making informed decisions.

Honestly, I barely see people with Down syndrome in my community as it is now. 

I advocate all the time. I spend more time than I should on birth boards, the amniocentesis board, the prenatal testing, and poor prenatal diagnosis boards of Babycenter.com giving accurate information, showing pictures, and sharing snippets of normal life in an effort to dispel some myths and fear surrounding Down syndrome. I blog about our life and our boy. I post articles and facts on Facebook. I take Eon out into the community and "show him off".

I fear it does little good.

I feel like I am standing on the shore with a cup, trying to hold off a tsunami.

There is a tidal wave of ignorance, bigotry, misinformation, deception, convenience, ambivalence, and fear threatening to wipe out people like my son. My cup of truth seems paltry in comparison. 

I feel discouraged and helpless.

At Peace

Perhaps, with postpartum hormones a swirling, I'm a little more emotional than usual. Maybe, because our recent delivery of Keturah was a little scary with a partial placental abrubtion, I'm more sensitive to the preciousness of life. Or maybe it's just that I am so tired of the trite platitudes that women use to justify their decision to kill their babies with Down syndrome. I'm tired of not being able to respond to the ill-informed reasons they give. I'm tired of reacting with compassion and "tolerance". I'm tired of reading that I'm the selfish one for giving my baby life. I'm tired of hearing that my child is "suffering" when clearly he is not.

Yesterday, I read a comment by a mom who terminated her pregnancy for T21. She wrote that her little boy is "at peace". Well, guess what?!? My little boy with T21 is at peace, too! He's at peace when he's sleeping safe and secure in his crib. He's at peace when he's playing trucks and cars with his brothers or wrestling with his dad.
He's at peace when he "holds me" at the end of a long day. He's at peace when he's coloring pictures at the dining room table or eating his favorite dessert. He's at peace as he embraces life at full-throttle. He's lived a full 21 months now, with many years to come...all of them "at peace".

We are blessed that he is not a memory, but a living, breathing, joyful little boy...at peace!

Just writing the above changes my heart to one of compassion for the women I started out so angry at. That's all they have...a memory of some kicks in the womb, a trip to a clinic or a hospital induction, all cloaked in a shroud of fear and grief. Of course they hold steadfast to the platitudes, it's all they have. To face the truth at this point, to have their carefully crafted lies fray even a little, would cause them unbearable pain.

My anger is misplaced. I wish I could see people through the eyes of my Jesus who grieves as I do for the injustices done to those little ones that He created, and yet, who loves and sees with compassion the women who caused the injustices to occur. It's difficult this despising of sin and setting aside pride to embrace the one who sins. I'm not very good at it when anger and bitterness seem so much more satisfying. Pointing the finger is easy; reaching out a hand is decidedly not. Maybe someday, I'll have the opportunity to do the latter. I hope that I'll be willing to do so.

This is a post I wrote last year at this time. I read something recently that made me dredge it up again. Not specifically related to Down syndrome, though.

We don't like the term "anti-abortion". It's a term the media and those "prochoice" coined to avoid the term "prolife". And yet, for most of my life, anti-abortion was a better descriptor of who I was than prolife. Oh, I called myself prolife, and I had the republican voting record to back it up. I was against abortion. Isn't that what "prolife" means?

I don't think so. Can you call yourself prolife and make comments to a mom with a large family like "better you than me" or "don't you know what causes that?" Can you call yourself prolife and fail to offer sincere congratulations to a newly pregnant mom who already has a 5 month-old baby? Can you call yourself prolife and scorn the pregnant teen, more interested in how she found herself in that position than with the precious baby she's carrying in her womb? Can you call yourself prolife and honestly think that the struggling mom with four under the age of five has too many children...even if part of her struggles are financial? Can you be prolife and look at my new baby and see anything less than a perfect gift from God?

NO! The answer is emphatically no. See, prolife means to be for life, not just against abortion. We have to support life and be certain in our own minds that God is the author of life. Let me say that again. God is the author of life, regardless of the foolish choices or less than desirable circumstances surrounding it. He alone decides who should be. Every life that He creates is cause for celebration.

Pro means "for". Being truly prolife is much more difficult than being anti-abortion. Being against abortion means voting our conscience, emailing elected officials, speaking out against it, etc. Being for life involves so much more. It means loving people as Jesus does; hating the sin, but embracing the person. It means giving time, money, and support to those who are in the field ministering to someone with an unwanted pregnancy. It means stepping outside of ourselves and offering help to those who were brave enough to choose life. Most importantly, it means taking a long, hard look at ourselves and asking the Holy Spirit to reveal any thoughts, attitudes, or actions on our part that are not consistent with the Word of God regarding life.

That last step is the hardest. I know. There were many for me. But God is able to change the most ingrained paradigm for those who are willing to adopt His perspective. Choose life!

I would add that considering adoption of one of the 147 million orphans worldwide is an excellent place to start. If you are not in a position to do so, support someone who is!