Musings on Faith and Down Syndrome

There's a blog hop happening every couple of weeks this summer, hosted by Meriah.  The topic for this time is "Faith and Disability."  The big question:  How has your faith (or lack thereof) influenced the framework within which you view/experience disability?  How has that "Faith Lens" affected your perspective?

There are some wonderful bloggers - excellent writers - who all have different opinions and perspectives on faith.  I'm not sure how well I can articulate my perspective, but I will try.

I can only speak to the disability that affects my life: Ben's Down syndrome.  And then my faith:  I'm a Christian, raised in the church, asked Jesus to be King of my life in junior high.

The main way that faith impacts my view of Down syndrome is that ... I believe that God is sovereign and that Ben's life has value.  This is not to say that I didn't - or don't - struggle with Ben's diagnosis sometimes.  I definitely cried a lot when Ben was first born.  And I still have days when my spirit feels tender and easily bruised.

At the same time, I haven't felt punished by God.  Ben is a rock star.  Anyone who thinks he's some kind of punishment has obviously not spent any time with him.  I haven't felt specially chosen either.  ("God gives special children to special people" is silly, I think).  I mostly feel like God designed our family, and He thinks that the 5 of us - me, Emmett, Evan, Corrie and Ben - ought to be together.  We will love and challenge and laugh with and encourage each other as best we can.


My "Faith Lens" lets me see God's fingerprints all over my life.  He's introduced me to amazing people in unexpected ways.  I met a Talk Tools-trained speech pathologist at a Pampered Chef party.  One of our neighbors down the street has a little girl with Down syndrome.  My doctor recommended I meet one local mom, then another friend mentioned the same mom, then I met her for real when we happened to be at a birthday party for one of her 4 year old neighbors.  And among all these new relationships, God has given me longtime friends and family who have listened and asked questions and tried hard to be there and understand.

While I was pregnant with Ben, our family was trying to learn verses together.  We read Psalm 139 and chose a section to memorize (vv 7-11):

"Where shall I go from your Spirit?
    Or where shall I flee from your presence?
If I ascend to heaven, you are there!
     If I make my bed in the depths, you are there!
If I rise on the wings of the morning
    or dwell in the far parts of the sea,
even there your hand shall lead me,
    and your right hand shall hold me fast."

When Ben was first diagnosed, I prayed and thought about Psalm 139 a lot.  Even there!  Even here, with this vulnerable baby, God is here.

On the days when I feel lonely ... or incompetent ... or angry ... or overwhelmed - and there are many days when I feel one or more of those! - I find rest and security in knowing that He is present.  I may be a mess, but He is not.  

I want so much to do everything right - to parent wisely, to be a thoughtful and compassionate wife and friend, to be faithful and responsible, to improve the world around me, to say the right thing at the right time - and this year has hammered home to me that I cannot meet that standard.

Faith allows me to be OK with not meeting the standard.  Faith tells me that HE will take care of my kids, my family, my hopes and dreams and plans.  Faith tells me that I cannot run from Him or hide from Him.  He sees me and loves me even at my most inadequate moment.  And He loves Ben and all of his 47 chromosomes!  Just like I trust God to hold me fast, I choose to trust Him for Ben ... and Evan ... and Corrie, too.