Friday, August 12, 2011

Quality of Life

I wrote the post below last October...but I'm revisiting it again today, because it really does speak to the issue of prenatal diagnosis of Down syndrome. So much is changing on the medical landscape..the new test MaterniT21 will be available in late 2011 or early 2012. Will we see a rise in the abortion rate for babies diagnosed in the womb with Down syndrome? It's hard to imagine, given that current statistics put that number at above 90%. But a test that provides a diagnosis in the first trimester will most certainly make it "easier" in the minds of many, to choose termination.

It's a slippery slope, but so far America seems content to make that inevitable descent, all in the name of choice. Once we as a society find that we can eliminate a whole category of humans from our midst, simply by targeting them through a first trimester blood test...what is to stop us from finding a "cure" for any other disability or condition? What if a test is developed for autism? Or Fragile X syndrome? Will we as a society choose to only allow perfect and problem-free babies to be born? Or will we, like other nations, decide that a "[Down syndrome screening] programme will be cost beneficial for the population and the health system ... the economic costs of screening outweigh the high costs associated with the long-term care needs of an individual with Down syndrome."

It's my hope that Lily's blog and so many others like it will make a difference in the way others view individuals who share her extra chromosome.

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Quality of Life   originally posted October 25, 2010
Dearest Lily,

A year ago this month I was up late many nights, contemplating your future. The month of October was spent waiting for a second level II ultrasound to see if there was a change in your heart. The doctors had told us they were 90% certain that you had an AV canal defect.

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In hindsight, that heart condition- or the prospect of it- was a blessing in disguise. It kept me focused on what was really important...

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...your life.

I hear and read so much talk about "the quality of life." Babies are aborted every year- millions of babies- because their parents don't believe their quality of life merits keeping them.


What is quality of life? Is it based on how intelligent we are? How able to relate to other people we are, whether we can read, write, drive a car? Who determines...the quality of life...
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All those nights I spent awake, a year ago.. when I sat under our big picture window, while your brothers and sisters and daddy lay sleeping in other rooms...what I was thinking about, crying about, praying about, was not- quality of life.

I was just thinking about....life.
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I wanted so much to know you were going to be okay.

Down syndrome- if in fact it was going to be an issue- we could handle.

It was your heart I prayed so hard about. I was so fearful we were going to lose you, Lily.

I prayed and prayed and asked God to take care of my baby girl. I told myself we would cross the special needs bridge- if and when we came to it.

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And we are.

I lost count of how many nights I spent staring out at the stars in the sky, those stars that are without number. I stared at the moon, told myself- if God created all the heavens and the moon and the stars and this world- He could take care of us.

This universe didn't just happen. It was carefully designed, and looking out at the vastness of the night, the brilliance and beauty of those stars just reassured me- God was in control.


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When my world seemed to be spinning out of control, when my heart felt like it couldn't hold any more scary news, God was there. He was carrying me through.

And somewhere along the way....your heart was fixed.

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Was it a miracle?

Or were the doctors wrong?

There are other babies- many babies- who we've come to know along the way. Babies who faced heart surgeries, sometimes more than one. Would God choose to heal my baby's heart and not theirs? I don't think so. I don't think God plays favorites. But... it's also hard for me to deny that a miracle took place.

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Because ultrasound after ultrasound showed no AV canal...no defect...no surgery needed...And when you were born and had your first echocardiagram outside my tummy- the doctors could find no defect.

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So was it a miracle? Or just chance?

We won't know until Heaven, dearest Lily.

But I know that the waiting made me so very aware that your life was in God's hands, not mine.

And some might say that your quality of life is less than others.

But your daddy and I would disagree. Your brothers and sisters, your grandparents, your cousins and aunts and uncles, and even strangers who have come to see your sweet face here...

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..have all seen a life that is beautiful and ordained and lovely and full of grace..and full of quality.

And it's late tonight, Lily. The rain is beating on my window as I type, and you are fast asleep in our bed beside me. And the moon is shining brightly behind those dark, rain filled clouds, and when I contemplate your future, I know...

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...it is good.

Loving you always,

Mama oxox

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P.S. If you haven't had a chance to yet, please don't forget to vote HERE for Lily. Thank you!

15 comments:

Lori said...

I am so emotional reading this post - not quite sure if it is the memory of you going thru all of that, or the total frustration I have been feeling lately watching our nation and our world evolve into a place where human life - at every level of development from conception to adulthood - is so disrespected. I think of conception - the fact that cells can join and create something as beautiful as our children....all the cell reproduction that forms our bodies in such a miraculous way - eyes to see, ears to hear, a brain to think and process information and also direct functions in our bodies, and a heart that keeps us alive but also thinks - it is all an unbelievable miracle...toss into that an extra chromosome that makes life a little more challenging and it makes that miracle even more miraculous!!!! I am in awe of God's amazing creation...

cathy said...

It was incredible the 1st time you posted this entry, but somehow, even MORE of an impact. Maybe because Lily is growing into a magnificent toddler, or because of all the children you are saving across the world, OR the babies you are SAVING from being terminated...I guess it is all of the above. As I have said to you before, you are moving mountains & saving lives. You are helping miracles, now. I am honored to call you my friend.with love & prayers
xoxo
cathy

Ginger said...

It is so sad to think about the "choices" women are being given for genocide. You mentioned autism, but autism isn't developed in utero. It develops later after some type of neuro-toxin has been given to the child, such as the mercury (thimerosal) that is still in so many vaccines.
http://www.whale.to/vaccines/ingredients.html

Kitty Kay said...

Beautiful, your post and your Lily. :) My greatest fear is the prenatal testing and what that may mean for kids. Couldn't imagine my life without mine. Which is why I will not support autism speaks as they are funding the research for a prenatal test and to me whats the purpose of that?

Jonana said...

Ok, I'm crying and it's too early to be crying but I am. What a sweet, beautiful post! And in my opinion, either way it was a miracle from God. He either miraculously healed her little heart or He miraculously allowed that machinery and/or the person reading the results to be wrong. When things like that happen, I count it a miracle either way!

Mrs. K said...

I am buying stock in Kleenix! Have I ever told you how proud I am of you? For bringing so many wonderful grandchildren into our lives, for fighting for orphans in foreign lands, for spilling out your heart, thoughts, and feelings for all to see. Not being ashamed to express your love of God, your praise of Him for giving you the chance to bring up a "special" child with that extra little something that makes her unique and yet, quite normal.

Miss Lils, Grammi loves you cupcake. xoxoxoxoxoxoxo

Mama Keene said...

Such a beautiful post! And such a sweet Lily! Your blog has allowed me to take a step back and truly see things in a whole new light. Though none of my little ones are sporting anything extra, I realize how much it wouldn't change my love for them. It saddens me to think anyone would end the life of their own child over the fear of what may be, when what may be will bring such beauty to this world! Keep doing what your doing, keep opening eyes, your making a differnece! Give your sweet Lily a squeeze for me, she is so adorable!

Katrina said...

Patti,

I am sure you have probably read this article

http://www.nytimes.com/2011/07/31/magazine/a-fathers-search-for-a-drug-for-down-syndrome.html?_r=1

But wanted to post it in case some of your readers have not.

Here is a man who had his wife have an abortion because he thought his child would be born with DS and that child did not.

Then God gave them a child with DS the next time and now he is trying to make a better life for them and completely loves his daughter.

I just can't believe that the world is sooo blind to what these children and adults have to offer.

But because of blogs like yours, more and more people are learning that DS is a blessing not a curse.

Thank you Patti.

Katrina
Carlene's soon to be momma
www.operationorphannomore.blogspot.com

Katrina said...

So sorry. I was wrong about the article. He made his wife get the amnio and it made her miscarry.

I read the article a few months ago and should have reread it before making unfair comments on it. So sorry.

Katrina
Carlene's soon to be momma
www.operationorphannomore.blogspot.com

Rochelle said...

Hi Patti!
I'm so glad that Lily's heart was repaired without surgery! Our daughter had the AV canal defect, and she was a trooper after her surgery at 3 mos! God gave us great peace during that time, and she's been fine ever since. :) I experienced the same thing as you when I found out about her heart. I was concerned about her having DS...it was her heart that concerned me. I just asked that God would use her to His Glory, and he has. I'm concerned about these tests, too. Very concerned. Thanks for your great words! :)

Rochelle said...

OOPs! I wasn't concerned about her having DS!

nicole said...

This was definitely worth re-posting. Mrs. K ~ I've often thought you must be so proud of your daughter and good job yourself!

Momma Jorje said...

What a timely post for me! Our unborn son was diagnosed as having Down Syndrome via amniocentesis on Monday.

Terminating was not an option that ever entered my mind. My husband made it clear when we married that no child of his would be aborted - it was part of the deal.

Anyway, I'm preparing now, researching, learning, and finding support (including blogs like this one!). We'll have our first echo-cardiogram via ultrasound in a couple of weeks. I'm a little nervous, but whatever life throws at us, I know my family will get through it together.

All that said, I think you're right... I think detection in the first trimester will lead to more terminated pregnancies. I honestly didn't even know you *could* terminate after the amnio diagnosis because it is so late in the pregnancy. Even so, we'd already been telling our girls about their little sibling and loving him. How could we then go and end it? But first trimester will make it easier for many.

Momma Jorje said...

Oh! Forgot to mention... I have been blogging for going on two years now, but DS is becoming a new topic of focus for me. Today I posted Part I in a series that I do hope will help other parents waiting for their amniocentesis to be prepared for their journeys.

Amniocentesis - What is it *really* like?

Jennifer said...

Lily, you are a beautiful little girl! I thank your mother for posting this and allowing a complete stranger to feel love like no other! You are a blessed little one, as is your family! I truly hope I can teach my four little girls the love that you experience every day from your family! It's hard to believe that this day and age, we see people turning away from the gifts God gives us and it could get so much worse. I pray that His hand be in everything in our lives and that we don't lose touch with His miracles! Thank you so much for touching my heart today! I hope this message reaches many MANY more!