Special Needs

One year ago today our lives took an unexpected turn. 

We joined the “special needs” club.  We had no clue it was coming... 

The pregnancy had been flawless.  Both pregnancies before it had been the same.  The labor and delivery went smoothly.  Josie dominated, delivering naturally for the third time.  We were overjoyed.  Three boys.  We were calling family and friends to share our exciting news.  It wasn’t until about two hours after our celebration had begun that a team of doctors and nurses surrounded our bed and told us to have a seat.  Your son Griffin is exhibiting characteristics consistent with Down syndrome.  That statement, those words, changed everything.  It rocked us to the core. 

What happened next is hard to explain or articulate.

I experienced an overwhelming and strange mixture of fear and faith, confusion and calling, pain and purpose, grief and guilt…guilt, I suppose, for feeling grief.  Questions flooded my mind.  How am I going to do this?  Self-identified inadequacies plagued me.  I am not equipped for this.  I am not patient enough.  I don’t have what it takes.  Resistance to our new reality raged.  I don’t want to be a parent for the rest of my life.  This is not what I would choose.  Everything felt surreal and scary and uncertain. 

That first night in the hospital I didn’t sleep much.

I tossed and turned and spent a lot of time looking at Griffin.  Sometime between 2-3 a.m. I fell asleep and the strangest thing happened.  I had a dream.  In this dream I encountered every person in my life that I had ever met with Down syndrome.  A guy named Jerry my parents had befriended when I was a kid, the daughter of a professor that I had grown close to while in school, an individual I had recently talked with at the local YMCA, and several others.  It was so weird.  It was like my brain had a file folder labeled “Down syndrome” and it had been storing memories without my knowledge.  I woke up sweating and out of breath.  My heart was racing and so was my mind.  I felt trapped.  I wanted to escape.  I wanted to jump out of my skin.  I felt like a giant ball of pent-up anxious energy that had nowhere to go.  So I started to pray…God, help me...and then ever so slowly peace began to creep into my frightened heart, and God’s presence became palatable.  The key moment came when I sensed God asking me to reflect on my dream.  As I did, I noticed that every single “special needs” encounter had been marked by love and joy. 

This past year has been a journey into deeper love and joy.

But that deeper love and joy has been discovered along the path of pain. 

Letting go of a future I had imagined, receiving well intentioned but hurtful comments, dealing with development delays, heart defects, ear problems, poor eyesight…all that’s been painful.  But pain and joy are not mutually exclusive.  The way to deeper love and joy doesn’t involve avoiding pain—but having the courage to open up your heart, embrace it, and live into it. 

Within the first week of Griffin’s life I noticed something important…

Whenever I started thinking about Down syndrome without him, I’d get anxious and my mind would start racing in a million bad directions.  But whenever I’d think about Down syndrome with him, while holding him in my arms, my fears would be replaced by love.  So I made a commitment to myself that I wouldn’t do any hard thinking about Down syndrome without Griffin being present.  We’d think it through together.  Very quickly I discovered that Down syndrome wasn’t something to be feared, but to be embraced.  And the more I’ve embraced it, the more it’s taught me about love.

As just one example, consider parenting. 

I’m a way better parent to my two older boys now because of Griffin.  Down syndrome woke me up to all the subtle and unspoken ways I was unknowingly communicating to my two older boys that they needed to earn my love.  Developmental delays have taught me to be less fixated on progress and achievements and more focused on connection and personhood.  Honestly, I now strive to parent my two older boys the way I parent Griffin.  I try to see my two older boys through Griffin-eyes.   

And it’s not just in parenting…

It’s in my leading and managing.  It’s in my marriage and my friendships.  It’s in how I relate to myself.  I am now trying to see and relate to the entire world through Griffin-eyes. 

Griffin isn’t the only one with special needs.  His are just more visible. 

The truth is that we all have special needs.  I think it’s unfortunate that the label “special needs” has been arbitrarily and wrongly attached to a select few.  It should be attached to all of us.  Labels have a way of creating separation.  They create distance between those who get labeled and those who do the labeling.  Labels give us unwarranted permission to sort by difference.  They promote disengagement rather than connection.  They provide reason for detachment rather than relational engagement.  Labels are dehumanizing.  Oh, there’s a Down’s baby.  Griffin isn’t a Down’s baby.  He is a baby who has Down syndrome.  There’s a difference.  Griffin is, first and foremost, a human being.  He’s a human being who has been fearfully and wonderfully made.  He’s got a unique personality, hidden potential, gifts and talents yet to be discovered, and a contribution to make in the world.  He’s a difference-maker.  Labels often prevent us from living into our shared humanity.

I’m not saying that we need to get rid of “special needs” language.  I am just saying we should apply it universally.  What if we all woke up to our special needs?  My guess is that there would be a lot more compassion and joy and love in the world.   

Encountering Griffin’s “special needs” has helped me become more aware of my own.  I’ve come to the conclusion that I’ve got my own developmental delays.  I’ve got my own struggles and challenges, weaknesses and inabilities.  And while at times I resent and want to get rid of them, just like I resent Down syndrome, the truth is that embracing them has changed the way I relate to me.  If Griffin has to deal with his, shouldn’t I have to deal with mine?  Along the way, I’ve discovered the importance of self-compassion.  I have little problem being patient and compassionate toward Griffin.  Why is it that I am so impatient and judgmental toward myself?  The same patience and compassion I so easily extend to Griffin, I’ve started offering to myself…and to others. 

I believe our lives and our world would be better if we universalized the “special needs” label.  We’d be more compassionate and loving not only of ourselves, but to one another.  Our lives and relationships would be so much richer if we all related to one another as we are—as people with special needs worthy of unconditional love and acceptance.