Monday, January 28, 2013

love, life and happiness

A few days after we learned about Faith, I came across a blog - you know in the usual way when you follow link to link to link to link and suddenly you're halfway across the internet and you don't remember how you got there.  I think it started with a search for "special needs parenting" as I was trying to wrap my mind around what our life would look like.  The blog is called halfpastnormal and it's about a mom's life experience with her children who have special needs (and a hubby who has ADD!).  One post had me captivated enough that I copied down some of her words thinking I would use them some day in a post of my own.  That post has come.

In the post, she's talking about the decision she and her husband had to make when they were pregnant with their second child. They had to decide whether to test him for the same genetic markers that her older son had in order to determine if the second son would be born with the same life-threatening diagnosis, Duchenne Muscular Dystrophy (DMD), as his big brother:
When the Chief of Genetics explained the genetic ‘blip’ that causes Mr. Sensitive’s DMD she emphasised that if we choose to have another child we would be offered prenatal testing, and then went on to explain the process of artificial insemination, if we so choose. The doctor drew six circles and put dots in three of them. I leaned forward, excited about six babies, even if they were just circles. 
Envisioning myself a Canadian ‘Octomom,’ I was thrilled to have the large family I’ve always dreamed of, at least on paper. The doctor then drew x’s across the circles with dots, saying that those embryos with the genetic mutation would be culled. Killed. I shrank away horrified. I glanced down at my son, then age three, playing on the floor. 
I cannot imagine life without him. But, I know that if I did not have this experience with him I might choose the ‘healthy’ embryo. I would never know what I would miss, and am devastated by that thought. I cannot believe that I could make the mistake of selecting ‘health’ over love, life and happiness.  But I know I would have, because I did not know any better.
I read those words and I cried because we were, ourselves, being faced with a similar choice.  This was the decision with which we were wrestling.  How much weight did healthy and normal hold for us?  How much would those words cost us if we said no to unique and special?

We have talked a lot about how our lives would change - both immediately and in the future.  From filling our weeks with doctors appointments and finding baby-sitters, to deciding where we live and how we will educate our kids, Faith will change the way we make decisions and how we spend our lives.

But honestly, what I've thought about the most is how having Faith as a sibling will affect Lila.  I read articles like this one, to try to gain some perspective on how to parent Lila as a sister of a child with special needs.  I thought about what it would cost Lila if we chose to adopt Faith.  In the short term it would mean less time with us, more time running around to various appointments (doctor, physical therapy, etc).  She would have to bend to the needs of her sister who had significantly different needs than a "normal" little sister.  She might not get the built-in playmate I have always hoped for her to have.  In the long term I imagined having tense arguments with 13-year-old Lila during which she yells at me that she hates being responsible for her sister, that she didn't choose it - we did.  I imagined her having to care for Faith as she ages when we are no longer able.  I felt the weight of the burden it would be on her and her future siblings.

I realized that it would probably be easier for Lila to not have a sister with special needs.

But, when it comes down to it, easy is not what I want for my children.  Character is what I want.  Selflessness.  Generosity.  Integrity.  The ability to put aside her own desires for the sake of others.  None of those things come from having it easy.  They come from experience with hard stuff.  By my own standards, to say "no" to Faith for Lila's sake would make me a bad mother.  It would make me the opposite kind of mother I want to be.  The experience of having a sister with special needs is not something I want to protect Lila or my other children from!  It's a gift!  A unique, beautiful, awesome gift.

Of course it matters to me how Lila might feel in the future, but I realized that how she feels is much less important to me than how she is shaped by her life's experiences.  And for Faith's sake, I don't think I could manufacture a better big sister for her.  Lila is confident and smart.  She is a caretaker.  She is fierce.  She is strong and stubborn.  She is creative and intuitive.  All of these things natural giftings will give her the grace and courage she needs to handle being a big sister to a special girl.  In the short term, I think she'll be able to sense and understand Faith's limitations, and in the long term I imagine Lila watching over Faith at school, protecting her, standing up for her.  They will be a gift to each other.  And I could just cry at the thought of it.

So as much as we felt the weight of the decision - as much as we know it is no small choice - it ended up being a relatively easy one.  In the end, we felt that we would lose so much more if we said "no" to being Faith's family than if we said "yes."  In the end, we chose life, love and happiness.

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While we're on the subject of blogs I've been reading, there's a blog I've stopping in on from time to time for about a year now that I now subscribe to.  Once you click over there, you'll see why.  The mama who writes it has a little girl with Down's syndrome.  She just turned three and they are raising $300,000 for Down's syndrome awareness (makes our $20,000 goal seem piddly!).  Check out this video and prepare to wipe those tears away. (2:51 is my favorite)

Nellas triple crown from ETST on Vimeo.

6 comments:

Dana Butler said...

Oh my gosh I love this post. Everything about it. And the video is just... awesome. I love you and your stinkin' amazing heart.... so excited for y'al.

Jami Nato said...

she remained giving eye contact while swaying. that was the best.

brit said...

I have loved catching up on your adoption journey through your last couple of posts! I especially love what you have to say about Lila growing up with a sibling with special needs. you are so right-It is a GIFT. I believe this is part of her story and God will use her "special" circumstances growing up in her future to bring him glory. I will be praying for you and Faith's mom and the transition your family will soon make!

Holly said...

This is so beautiful! After reading about this journey that you guys are on, I feel more confident than ever that you will provide a very loving home for a baby like Faith. I appreciate your honesty, tackling the hard questions and weighing out the various situations you may face. We feel so blessed to be taking this journey with you and know He will "fill in the gaps" as you guys continue on!

Anonymous said...

Your blog is one of my favorites! You write with such honesty and tenderness. I am keeping the "Faith"....

Angela said...

Thank you for sharing my post!