Faith

It is such a tiny word.

Five little letters.

But such an enormous impact.  Do you have faith? Do you struggle with faith?

I keep asking myself these questions.  Where does faith fit into my life?  I have been surrounded by religion since birth.  I’ve always believed in God. 

But, while it is next to impossible to put yourself in someone else’s shoes, I’m fairly certain Jenn and Chris Hawn could run faith rings around me.

They buried their six month old son today.  They stood at his tiny casket and greeted friends and family one by one.  They cried together, they hugged, they accepted condolences.  As I touched them, I found myself tilting my head, looking for the faith dust that must surely be sprinkled on their shoulders.  They were smiling slightly through suffering. They were talking about the moment Ryan passed late Monday night - in their arms, in their bed. They are sure Ryan smoothly took Jesus’ hand and with the most amazing vision, left one life for another.

I am in awe.  Strong faith appears to bring clarity and personal healing in a way I can hardly fathom.  I am envious of a trait I am certain I do not possess.

Again, I believe in God.  I pray daily.  We talk about religion. My kids sing songs about Jesus and God with the most pure voices. It often moves me to tears. I see God in them.

But somehow I don’t think you truly know where you stand on faith - on true, honest, I-feel-God-in-my-soul faith until you experience something that makes you question.  It is at that moment that you decide: Can my faith carry me through this?  Do I believe enough?

I imagine Jenn and Chris ‘questioned’ when they found out Ryan had Spinal Muscular Atrophy.  I imagine they ‘questioned’ when they understood they would have less than a year to absorb his existence.  But I believe they got the answer they needed on Monday.

And that answer, that faith, is what gave them the iron clad strength to wrap a blanket around Ryan today, looking for all the world like he had just gone to sleep, to say goodbye, and to believe in their hearts he is in a better place and they will see him again.

(If these had not been sentiments they actually expressed to me, I would never presume to say them. I think I am too selfish to be capable of wrapping my brain and heart around this level of faith - hence I am amazed by them.)

As they both leaned in and kissed Ryan goodbye, a silent roar filled my ears. As they closed the casket, a two ton elephant took up residence on my chest, pressing all the air from my lungs. As Jenn lay for a moment across the casket, I closed my eyes and silently willed her the faith she needed to stand up again. And she did it.

Tucked neatly beside their little boy, a small piece of their souls will keep him warm and loved until they can see him again.

I most certainly have faith in that.

(A final note - please stop by Jenn’s site to sign the petition on the right hand side - your signature will help to battle SMA - the disease that took Ryan away from his family. Thank you for caring.)

Ryan Michael Hawn - 1/27/09 - 7/28/09

There are small, wet circles covering the surface of my black desk. 

I didn’t even notice them until my typing arm shifted through what felt like a spilled glass of water.

After a second of confusion, it made sense. I am writing through tears.

RYAN MICHAEL HAWN
1/27/09 - 7/28/09

Ryan Michael Hawn passed away overnight.  He was this sweet little guy.  I introduced  you to him here. (Short video included) He was struggling through Spinal Muscual Atrophy - trying his hardest to give his parents and older sister every single minute he could. Yesterday was Ryan’s 1/2 birthday.  He was only 6 months old.  In that tragically-short time he gave his parents millions of amazing memories, touched thousands of people, and has encouraged hundreds to sign the petition to fight SMA.

I knew him for only a small portion of his short life. 

I can’t even imagine.

I am praying, deep down in my heart, that Ryan’s parents, Jenn and Chris, and his big sister Charlotte, are surrounded by enough love to guide them through this.

If you get a chance - would you sign the petition to help end SMA ?  Maybe someday, families won’t have to lose a child to this disease.

Edited to add: I just spoke with a mutual friend.  Though Jenn and Chris were terribly worried Ryan’s passing would be physically painful for him, it was apparently very peaceful.  He lay in bed between the two of them.  He opened his eyes, smiled and went to sleep.  This is how Jenn hoped he would leave them.  I am grateful her one small wish was granted.

I wish…

I wish there was no such thing as Spinal Muscular Atrophy.

I wish sweet Ryan Hawn would be physically with his family forever.

I wish Jenn and Chris Hawn didn’t have to suffer the pain of knowing they would have have to say goodbye to their young son.

I wish treatments for SMA were a reality and a cure existed.

I wish that the numbers would change from 1 in 6000 kids affected by the disease to 1 in 100 billion.

I wish there was something we could do.

Wait, there is.  It is something small, but it just might help.

Sign this petition to help end SMA.  Experts think they are close to a viable treatment - wouldn’t it be wonderful if your signature helped to create that reality?

Tonight, I am MCing a fundraiser for Ryan’s family.  I am blessed to know this family.  I am amazed at their strength, courage and grace.  Keep them in your prayers.

Do it for Ryan

Last Thursday I met the sweetest little guy in the world.  His name is Ryan.  I am lucky to have met him.

Ryan has Spinal Muscular Atophy, a disease I had never heard of until the Hawn Family came in to my life.  And now, I can’t get Ryan, his parents Jenn and Chris, or his little sister Charlotte, out of my head. Read more