September 25, 2013 · Personal

Back in August, we realized it was creeping toward the anniversary of Owen’s time here on earth.  I could feel this pressure.  Like I was supposed to come up with some way to honor and remember our son.  This pressure wasn’t from any outside source.  Just the pressure I put upon myself, as his mom, to celebrate his little life and the impact he made (and continues to make) on our lives.  I wanted something tangible, that caused us to pause from the busyness of life and intentionally remember Owen.

But I couldn’t come up with anything.  I couldn’t think of a tradition that I really felt called to start and continue for our lifetime.  I also lacked the energy to organize anything extravagant.  The clock was ticking.

When we first considered forming a team for Cleveland’s Congenital Heart Walk, I felt awkward.  I felt alone.  An emotion I have felt many times in our journey with Owen.  I thought about all of the teams that would be participating.  Survivors.

I wanted so desperately to participate in this event, but I had this fear that I would be a symbol of a painful reminder.  A reminder that Congenital Heart Disease is real, and not all heart babies live.  I didn’t want to cause any pain for these families.  I wondered if this event would be better off with us not going.

We decided to just do it.  We signed up and got the ball rolling to form our team.  “Owen’s Fighters.”  Shirts were designed, family members booked flights, donations came pouring in.  We were doing this.

The day came before we knew it.  We arrived at the walk and started weaving our way through the crowd of people toward the registration tent.  I started noticing people’s shirts and recognizing team names I had previously read on the event page online.  As I approached the tent, I saw her.  A woman…another Mom…wearing a shirt honoring the memory of her baby boy.  His picture looked surprisingly similar to Owen’s.  The same tubes.  The same wires.

I was caught off guard, and I froze.  I couldn’t go up to her.  I couldn’t say, “I lost my son, too…”  I wasn’t strong enough this year for that.  The fact that I showed up at all maxed out my strength for the day.  But in that moment, I was comforted without a word being spoken.  A simple t-shirt reminded me that I am not alone.

My photography client, Emily, was one of the speakers for the event and shared her story about her son.  I heard her voice choke up over the microphone as she began to talk about their days in the hospital and the reality of a life with a heart baby.  I teared up.  Knowing all too well what that all feels like.  I worked my way to the front of the crowd so I could see her.  To remind her, in the chance that her eyes scanned the crowd and saw mine…filled with tears…that she was not alone.

As I listened to these stories of hope, I heard medical terminology mixed in.  Terminology that used to be foreign to us.  Overwhelming.  Confusing.  I now understand heart terminology like stenosis, tachycardia, ECHMO, SATs, prostaglandin…  But I easily remembered a time where I didn’t.

Within the last two months, two friends of mine found out that their little ones are going to need open heart surgery by the time they are 6 months old.  One baby is already here, the other is still in the womb.  These parents are entering into the scary world of cardiology appointments.  Echo’s.  Doctor upon doctor appointments which become this other world packed full of unknowns and delivered to you with a big scoop of anxiety on top.

I remember walking out of these appointments.  Confused…scared…emotional.  Feeling like I had no one to talk to.  No one who had been in my shoes who could validate what I was feeling and offer the best possible comfort.  A simple phrase.  “I’ve been there.  I’m here now.  You are not alone.”  I have the opportunity to try and break that cycle of loneliness for these families.  Just by being a phone call or text away.  Families who, by this time next year, will be able to form their own teams.

As we started the walk, the team in front of us had shirts on that caught my attention.  The backs had a list of statistics and conditions that children can be born with.  Reminding us how common Congenital Heart Disease is.  One in 110 babies are born with some sort of heart defect.  Their daughter’s condition is one in one million.  A number that seemed so high to me.  I began to calculate our situation, and smiled as I thought about my “Young Fighter.”  Breaking the odds and spending 3 weeks with us here on this earth.  Owen was one in 7 BILLION…

In that moment, I realized we were right where we needed to be.  We were honoring our fighter by continuing his fight.  Raising funds and showing up to unite and embrace these families still living out this reality.  Remind them that they are not alone.  We may not have the exact same circumstances, conditions, odds or end results, but we are all walking the same walk.  So symbolic.

There was something so healing and uplifting about coming together for this event.  On September 7th, we walked for Owen.  With a team of almost 70 friends and family members, we walked a one-mile loop in honor of my son.

Even Dr. Stewart was there and spoke to the crowd.  He took the time to visit with past and current patients, pose for pictures and wear pins in honor of the kids he has worked with.  It was so good to see him again.

There were smiles.  There were tears.  It was a beautiful day.  A sunny day.  A day of healing.  A day of hope.

“How Great Thou Art” was playing from the church bells ringing at the noon hour.  The crowd grew quiet or I just couldn’t hear them anymore.  I’m not sure which.  Either way, God spoke to my heart through the final verse of that song.  A verse that reminded me that some day I will see the big picture.  But for now, all I need to do is keep walking…

“When Christ shall come with shout of acclamation
And take me home, what joy shall fill my heart
Then I shall bow in humble adoration
And there proclaim, my God how great Thou Art.”

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Click here for the very beginning of our 8 year journey through life, loss and our unexpected struggle with secondary infertility.  Starting with what we shared at our 3-week-old son’s funeral.