An Open Letter of Grief

Dear Culver Family:

I cannot imagine your loss. Your reality is our fear.   It's a fear all parents of a child with an illness or disability harbor deep down.  We rarely give it voice but it lurks in our mind - how can we bury our child?

I do not know you.  I did not know your son personally.  But our paths have crossed.  We lived not far apart in Oklahoma for several years.  Maybe shared the same doctors and been in the same hospitals.   I've seen his name on the Board at Adaptive in Durango.  He was on the mountain at the same time as our daughter.  Enjoying the Mountain.

Ashley and two of her ski buddies.

Any psychologist would say I'm projecting my own grief.  I know that.  This past month, my daughter Ashley had her 6th surgery.  Yesterday, I scheduled her 7th.  The day before I scheduled her umpteenth botox injection.  And I have to schedule allergy testing.  And her arm is bothering her in the cast.  And there is no end.

Ashley and Me before Surgery #5

Children's Hospital of Colorado, Denver

As my dad read your son's obituary to me I was bewildered.  Why?  It was sad but I didn't know you.  Then he read where all gifts were requested to be donated to the Adaptive Sports Association of Durango, CO.  Suddenly the world grew small.  This Association, so near to your son's heart, has meant the world to our family.  They gave our daughter speed!  After always being last - last in line, last down the hall, last in a foot race -  she declared, "I am first!  I can go fast!"

In your grief, you thought of how you could help others.  And the tears began to flow.  I held them back while I called Ann Marie at ASA to make sure she knew of your son's passing.  Then we cried on the phone together.  One of our own had found freedom from his broken body -he's running in Heaven now!  Then I stuffed the tears again.  Later, I sat in the shower and cried.  I cried for your family.  For your grief.  I cried for my daughter and mostly I cried in fear.  The fear of laying my own child to rest.  I think the tears ran out.


So today I pray for you.  As your family members go home and the silence becomes deafening may the peace of God wrap around you.  May the God of creation remind you of the wonderful gift your son was to you and to so many others who knew him.  May the Spirit of the Living God be so real to you that you feel his presence against your cheek.

And I also thank you.  Your kindness will introduce the mountain to so many others.  When you are back in Durango, I hope to meet you.  And if not Durango, let's meet in Heaven.  Our kids can run together and join Jesus in a foot race!  I bet He lets them win.

Pre-Surgery Parents

Ashley took this photo before her wrist arthrodesis in May at The Children's Hospital in Denver, Colorado.

We're sporting the latest styles in nervous, tired, praying without ceasing Mom and Dad Daily Wear

Trusting

It seems that each week presents a new challenge.  Legs, arms, muscles, teeth, toes, even hair - they all seem to be connected to Cerebral Palsy.

We learned early in our marriage to never ask, "What else can happen?"  That question is usually followed with an answer that leaves you gasping for breath!

We take each day as it comes.  But some days, I dream of waking up and everyone is healthy;  no one hurts;  everyone's bodies function well;  no tummy aches, medication reactions, sports over-use pain;  no joint swelling or wheezing.

Dream on!

Grace of each moment.

That's a dream that's a reality!

God's grace.

Project Loving Arms

Wanted: volunteers to go to Children's Hospital willing to assist families by sitting with their children so they can rest. I will be talking with Vhikdrens in the next few weeks and want to give a head count of how many we may bring.

Playing with ideas but looking to be in Denver for 48 hours with the ability to take sleep breaks on a rotating basis. Very much a blitz. Then come home and plan another trip!

Also looking at Project Loving Arms service in Durango.

Let me know!