A Decade

With the tenth anniversary of the day our lives changed nearing, I looked at the calendar and cringed.  Seeing May 3rd on the page didn’t bother me nearly as much as the swarm of events that week.  There were two in particular that I knew would be challenging.  The first, on May 2nd, was a celebration for the completion of the capital campaign to build a new NICU/PICU building at Kapiolani.

 This has been a five-year effort, where amazing people and a generous community came together to ensure children and families would have the space they need to stay together during the healing, or the letting go, process.  I cannot count the number of dinners and events I went to in support of the campaign, and many of them included well-produced videos which required tissues be placed on every table.  There is absolutely nothing as heart-tugging as hearing a family’s story, in their own words, about their child’s illness, difficult birth or injury, and then the joy of a good outcome.  I loved the stories with every bit of me except for that empty space in my heart and the pit in my stomach.

It is not too strong to say that I dreaded this event.

I walked in to see the theme of the evening lit up the curtains behind the stage:

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The irony did not amuse me, as I recalled that ten years ago on this night I rocked a freshly-bathed Abbie to sleep on my lap as I read to the other kids.  On that night, I didn’t even know how to get to Kapiolani, had never seen a child with a trach, and had no inkling that this would be the last night of “normal” for  the rest of our lives.  I would have lingered just a bit longer in that chair, with that precious girl melted into me, had I known.

Yea, I’ve got a “Journey of a Lifetime” for ya….

Over these ten years I have gotten very adept at putting on a game face, however, and I was able to appreciate the achievement marked by this night, and the hope it holds for the future.  I smiled, made small talk, and posed for pictures, while holding my breath and biting my cheek.  This was an evening that challenged even an old pro like me.

As we were seated for dinner, I began to brace for the beautifully brutal videos, and vowed not to make this night about me in any way.  I would not break down.  I would not.  It turned from a promise to a plea, but I was committed.

Then, the chaplain took the stage, and the whole night changed.  I want to share the blessing he gave, in its entirety, as I felt he, and the Author for whom he’s a scribe, were speaking straight to me in a very profound way.

“Let’s take a moment

  as spiritual beings

  to truly “enter the room”

  before we receive tonight’s blessing.

In order to be fully present

in this time of celebration,

to truly appreciate

the journey we are on together

let’s let go of the things

that are keeping us elsewhere.

So, let go of two minutes ago

and the attention of people and pictures

Then let go of two hours ago

and the fray of our workplace

or the fracas of family life.

Now let go of two days or two weeks ago

and that unexpected high

or that embarrassing low.

Just let it go, but don’t let me lose you to Frozen, that latest and greatest Disney theme song.

Now, the journey of which we speak

can be mapped out with a convincing degree of exactness

but the conditions we face on this journey

 are never certain,

and in this 

we are reminded

that we rely on the blessings of our Creator

to sustain and drive us.

And in being reminded,

          we are thus able

                to tie the blessings we receive

                           with the giving of our blessings to others.

Open your hearts and minds and receive God’s blessing:

When the journey begins and we leave familiar shores,

          may we be blessed with the confidence

                   that we will find our place on new shores.

When the journey affords us times of calm and quiet,

         may we be blessed with the attentiveness to rest

                  and thus have strength for what lies ahead.

When the journey leaves us disoriented,

         may we be blessed with a sense of what’s true

                  so not to lose sight of our core purpose.

When the journey surprises us,

         may we be blessed with an openness

                 that allows for adjustments and growth.

When the journey finds us feeling alone,

         may we be blessed with a group spiritual force

                 that comes from those who share the vision.

When the journey affords us new opportunities

          may we be blessed with the courage

                  to take ourselves even further

                          than we could have ever imagined

And when the journey seems unsustainable

            may we be blessed with the full understanding

                  that the greatest blessing of all — love —                                             sustains every worthwhile endeavor.

Amen.”

— Joshua Almanza, Chaplain, Kapiolani Medical Center for Women and Children

He had just unknowingly recited our decade-long journey, and consecrated it for me once again.  I had been consumed by pain and loss when I walked into the ballroom, but Joshua reminded me of the blessings, of the growth, of the joys, and of the truth that we have never ever walked alone through any of this.  We have been surrounded by love and support from “that day” to this one.  We are so utterly thankful.

I am working on a video to capture these last ten years, but did not want to let too much time pass before I expressed how grateful our family is — for Abbie’s life and amazing progress, especially as of late; for our family bonds that have been strengthened and continue to flourish even as our sons leave home, and for the steadfast, prayerful, kind, and persistently loving friends we treasure.

Here’s a a few photos from this “journey of a lifetime”:

Second week in the PICU.  May 2004

Second week in the PICU. May 2004

After she got her tracheostomy, we were overjoyed to see her face again.  PICU, May 2004

After she got her tracheostomy, we were overjoyed to see her face again. PICU, May 2004

 

RJ and Abbie shortly after Abbie came home from the initial hospitalization.  July 2004

RJ and Abbie shortly after Abbie came home from the initial hospitalization. July 2004

 

Fall 2004

Fall 2004

The day the trach came out!  What a victory that was.  March 3, 2005

The day the trach came out! What a victory that was. March 3, 2005

The girl still loves bathtime!   2005

The girl still loves bathtime! 2005

First real haircut, 2008

First real haircut, 2008

In her power chair, 2011

In her power chair, 2011

Abbie Kyle leaving for college

The day Kyle left for college, 2011

The most beautiful butterfly...inside and out.  2011

The most beautiful butterfly…inside and out. 2011

Besties!  Claire is the most phenomenal friend and pen pal.  2012

Besties! Claire is the most phenomenal friend and pen pal. 2012

Turning 11.  2012

Turning 11. 2012

Surrounded by her princes.  June 2013

Surrounded by her princes. June 2013

My Valentine!  February 2014

My Valentine! February 2014

Now Abbie has braces and Claire doesn't!  July 2014

Now Abbie has braces and Claire doesn’t! July 2014

Checking out Superman, April 2014

Checking out Superman, April 2014

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Enjoying the plants and flowers outside. May 4, 2014. Ten years a SURVIVOR!!!

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Pondering May 6, 2014

 

And one last photograph.  It’s not of Abbie, but it symbolizes the “how” of this journey. There is no way that I could have made it, that our family could have not only made it, but thrived, and there is no way that I could look forward to the next decade of this adventure with anticipation, renewed purpose, and joy, without this man:

Indeed!

Indeed!

 

 

 

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