Saturday, October 2, 2010

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; "~Psalm 139



I was 20 weeks along in my pregnancy with Zoey,when our Level 2 ultrasound detected a heart defect.Too small to give it a name at that point but nonetheless,a defect,a tiny hole.Which later would prove to be not so tiny after all.Previous to this ultrasound I declined any prenatal screening.I was 42.I knew what the medical data said,having a baby at my "advanced maternal age"..This was my 6th child and I just didn't feel the need for tests,especially an amnio.

Two weeks after the initial finding,we were given a definitive diagnosis of an Atrioventricular Septal Defect.The pediatric cardiologist doing my exam said it was a repairable defect but followed with,"we need to know how you want to proceed,you only have 2 week window of time to terminate."I sat,bolt upright,wanted to run from the room.Wanted to throw up actually but instead, gathered my wits about me and said,"I'm having this baby."The doctor asked me if I was a person of faith.I said I was.To which she said,"It often makes the the decision easier."

And for me,for us,it was that easy.From the moment we knew Zoey had a heart defect,that was all that mattered.We had one goal and one goal only and that was to get her here and get her to surgery.Her type of heart defect,AV Complete,told us all we needed to know anyway:she was most certainly going to be born with Down syndrome.The chance she wouldn't be,were slim to none.

When I followed up with my regular OB the next week,I told him how taken off guard I was by the cardiologist's comment,to which he said:"You shouldn't be."What I learned that day and what I have learned since,is that my family is indeed in the minority when it comes to continuing a pregnancy when they know they are having a child with Down syndrome.That blows my mind.What blows my mind even more, are the staggering statistics worldwide:upwards of 94% of pregnancies,of precious babies carrying that designer gene,are terminated.My heart aches just writing that.

When Zoey was born I was asked one thing over and over,time and again,and it was:"Did you know she was going to have Down syndrome before she was born?"For the longest time I didn't give that question much thought until one day it dawned on me.You see,i am convinced, that many are asking that question because they want to know if we had a heads up or did we just get "stuck"."Did we have a choice?To which I proudly say today:"You bet we had a choice." And if we had the opportunity to choose again,our choice would be the exactly the same.Even knowing the incredible obstacles that Zoey would have to find her way through.Despite the extras that came along with that extra chromosome.Regardless of the uncertainty of her future.That choice would be the same.

Because after all,are not each and everyone of our lives filled with uncertainties?When our other 5 children were placed in our arms, with their seemingly "perfect" genetics,we had no idea what the future would hold.In my 23 years of raising children, I have seen a great deal when it comes to the lives of typical children around us and the paths their typical lives have sometimes taken.Alcohol and drug abuse,mental illness,tragic accidents and yes, even cancer.Our children with Trisomy 21, came with some infinite,indisputable truths,that is for sure.But ALL life holds much of the same.

This excerpt is taken from a piece called "Through Rose Colored Glasses",written by Zoey's big sister Caitlin,and I thought it was the perfect way to end this post:"

"But how did such a little baby know about these glasses? How did she know to give them to me. The amazing thing is, Zoey has a pair of rose colored glasses herself.

She was born wearing them.

The blueprints for Zoey's glasses were located on her third 21st chromosome, and they genetically formed right into her very being. Within her genetic makeup, she contains the secret to living a beautiful life: optimism, perseverance, and joy. She does not choose these traits, they are in every cell in her body. She exudes beauty and faithfulness because this is her nature. Zoey's rose colored glasses are not a mark of her ignorance or her foolishness, they are a symbol of her ability to strive in an unfair world. And she didn't have to buy these glasses, shop around for them, or try them on for size, they just came perfectly tailor made for her."

And I cannot say it enough.I cannot be any clearer.The choice today would be the same.How could it not?

21 comments:

ANewKindOfPerfect said...

It always blows my mind when people ask me if we knew about Emily's medical problems before she was born. The answer is no, but like you, there would have been no choice anyway! I wouldn't trade in a single minute of Emily's life. I love this post, and Zoey's sister wrote such a touching piece!

To Love Endlessly said...

What a beautiful post! Brought me to tears reading the other post. How perfectly put...

Cammie Heflin said...

You write so beautifully!!! I LOVE reading all of your posts! Caitlin came by it honestly!

Reagan Leigh said...

That picture may be the best yet! Could she BE any cuter?!?! I just LOVE the piggies on her! What a scary statistic that was...I can't believe the percentage is that high. I was just telling someone the other day about how most people who have a down syndrome child (or a child with any disability for that matter) experience a period of mourning...for the loss of the perfect, "normal" child they were expecting. And then I said...that is everyone except Heather. You found out and immediately you were accepting and you just continued on just as if you knew all along. You are an amazing person Heather and Zoey is lucky to have you as her mother!

Elizabeth said...

You are wise and have very wise children. I am glad that Zoey is here.

Tina said...

What a beautiful post...made me so happy to read. I know I found out only after and I did have to deal with some emotions but I never had to make a choice which I am so thankful for only because I live in a society where so many people (extended family) would have tried to make the decision for me. I knew I was in the high risk after my triple test but I refused the amnio eventually because I knew I couldn't get rid of my baby so what was I doing it for? My mom-in-law asked me for a long time after why I didn't do the amnio, she was obsessed with knowing why I didn't do more tests, she hounded me with that question till I had to cut off contact with her. She told me in plain and simple words that we could have avoided this and that after Saira was born, she never held Saira she would hardly look at her, so I am happy I didn't have to fight these people while I was pregnant because it would have been an ugly fight. The society here is only coming to accept and understand people with special needs, I could go on and on but the sad thing is 99% of people would end up aborting such a child. I loved your post, just reinforced to me that there are still people in the world who think the way you do and I'm not the crazy one here for thinking that way, at least I have a choice now to surround myself with that kind of positivity in my life.

Ruby's Mom said...

I didn't know Ruby had Down syndrome until she was born.I was offered an amnio when I was pregnant with her and refused it because I knew no matter what I would never abort.
I love the piece by your daughter about Zoey's rose colored glasses.Simply beautiful.These special children bring so much to our families.

molette said...

Wow, how wonderfully written. Your daughter/s are beautiful. I love what she wrote, what a gift.

Kristin said...

Beautiful. I am, obviously, so thankful that Max's birthmom didn't choose abortion.

SECRET PEPPER PERSON: said...

I just found your blog through your comment on my blog and I'm so glad I did! I read this post and it literally gave me chills thinking about the "termination." We have so lost our humanity which seems to be a theme for me this week in my reading and viewing travels. I just watched a documentary called Food, Inc. never dreaming that I would come away with more shock about how we treat one another...yes even in the food and seed industry! Why should I be so surprised when we treat human life like it is something to be tossed aside without a thought? Zoey is a jewel and you are the foundation she has been "set" in.

Cheri said...

Loved, loved, LOVED this post! I want to shout the same thing.... The choice would be the same...we'd choose these loves of ours all over again, and again, and again in a heartbeat!

...I remember reading Caitlin's Rose Colored Glasses a few years ago when she first shared it during 31 for T21 and being blown away then.... and am still blown away, I love reading it!

Cheri said...

BTW....interesting about the ASD, I never thought about it in the terms you described that if a child has this heart condition chances are slim that they do not also have Ds. Never thought of it in that way I guess rather they have Ds so chances are likely they have a heart issue as well. ....I may be rambling not sure if that made sense but trying to share I had a light bulb moment ;) (and of course Reid had an ASD as well)

Proud Grandma said...

What a beautiful post - Zoe is so lucky to have you all as her family.

Googsmom said...

I love Zoey!!!

Angi said...

I don't think people should have that choice...I shared with you before that we were told (and given options...such as amnio...uhh NO THANKS!!)our little Miss Mazzelyn was at a high risk for being born with Downs, for me I was concerned more for the "heart" issues children w/ Downs so often have...they said her heart was perfect! I knew I would never terminate...but I had grown up with brothers with DS...my husband had not...the day my husband came to me and said "no matter what happens she will be ours" I think I fell in love with hima all over again! Acceptance is the only option...

The VW's said...

Love that verse!

Absolutely LOVE that picture of Miss Zoey!!

And, I love that you are in the 6-10%! This world is a better place because of families like yours and because of Ds children like ours!!

Love and Hugs!!!

Bea Braun said...

94% how is that possible? It is truly mind boggling. Zoey brings such joy to all that meet her. She is a gift from God, how can anyone even consider terminating such a beautiful gift? Caitlin's words say it all.

Dora's Daddy said...

Wonderful post. Thank you for that. I learned recently that there are many types of trisomys...trisomy 21 just happens to be one of the ones which doesn't result in miscarriage...in other words, to me, those with trisomy belong here.

Melissa M said...

Beautiful post! And even though I know the statistic it always breaks my heart to see it in black and white like that. I'm proud to say yes, we knew Claire had Ds, and we choose her, just the way she is. And we love EVERY bit of her to pieces.

Peter Olson said...

I love that verse: Psalms 139:14
And, we are all created in God's image. (Genesis Chapter 1)

Heather,
You are beautiful! Zoey is beautiful! Everyone in your family is beautiful! You are surrounded by beauty. :-)

Thank you for sharing all that beauty with us.

We are blessed!

Melani said...

Some doctors are just like that...letting you know you can terminate the pregnancy...I was 19 yrs old and pregnant with my 1st child and the Spinal Bifida test came back abnormal and they wanted to do an amnio...well being 19 I didn't know anything and the dr said and I quote..."if the tests come back as positive I can send you to a doctor in Los Angeles and they can do an abortion." I was already 5 months along, are you kidding me??? I never even told my parents this until just recently...I would have kept my baby NO MATTER WHAT. in my opinion dr's suck sometimes...