Ezrah May Harney

You are 15 years old today.  Sadly, you broke tradition and rushed out the door in a hurry for basketball practice…the number 15 pancakes will be here when you get back…

If this morning, isn’t an indicator of what life is like with you lately…I don’t know what else could be.  We are all just thankful to be in your sphere when your busy schedule allows.  More than anything, you have kept us on our toes this last year and we feel like narratives of your story have been flipt, by the only TRUE script writer, God.

Your dad and I have found ourselves bracing tears in public places, as your journey of health and independence have flourished.  And you know how we feel about crying in public…but truth be told I have found myself crying publically…ugh…with you…and yet these haven’t been tears of sadness. 

Flipped script…remember?

(If you don’t recall, I shared in a prior blog this year, after our Make – A – WISH experience in the Bahamas.  If you didn’t read about that…and you want to…you can head to the main page and find the blog there )

Your story, Ezrah, has reminded not just our family, but many others, of God’s loving kindness.  Living with a fatal disease, spending so much of your life marginalized in ways, because of the dyer needs of safety…you persevered.  You told me this year, “it’s all I knew mom, I didn’t know anything else”.  I held your tiny 8 yr old sister yesterday, looking at her small hands and thinking about how I held hands that age and smaller with you in the hospital.  Waiting, praying, hoping for a miracle.  Not sure to dare to hope at times if I was honest.

Fatal. A term you came to grips with and processed with our children’s pastor at the age of 8…

Chronic…we haven’t lived a day where CF hasn’t impacted our family in some way…

No cure…

Life expectancy has been drilled into us. 

But then…you started this new gene therapy.

Little did we know that, Ez, you again were meant to share your story with others.  An email I saw in passing, but didn’t really understand, ended up taking us somewhere I never knew we would go.

Washington, DC

Children’s Hospital Association, along with Seattle Children’s Hospital, requested Ezzy be a patient advocate on Capitol Hill.  Helping lobby 3 important bills that would impact pediatric dosage for critical meds, access to accelerated Medicaid for Alaskans with chronic or fatal disease , for the rare population of those with cystic fibrosis.

There we were 2 small town girls, with big city hearts, walking the streets that heros of our country walked for generations.

It was your eyes that found our Tribe’s flag at the National Museum of American Indians.  You braved the Holecaust Museum with me and many others and watched with reverence, the atroscities before your eyes.

When the business meetings started…I braced myself for the strong soul I know you to be.  Strict rules, high expectations, little control…all trigger points.  Your life has been so goverened by these things, thanks to Cystic Fibrosis.  Our harsh words exchanged in the cafeteria in the Senate…showed that we had both reached our limits of smiles, small talk, lobbying, extroverting and required business attire.

Even though the days were filled with meetings after meetings.  Running from the House to Senate to the Hill, using the underground transit or ubers, in muggy DC.  

Running into another small town local girl, doing her thing, was a special ordained moment.  

Sitting in the House of Apropriations with Senator Murray, listening to you tell your story. Ended with me being hugged by the Senator…while we both wiped our eyes.  

Our special visit out on a private balacony, garnered you the title, “our little Alaskan good-luck charm”.  I lost count of the times it was said, “this never happens” by the team.

Ezrah, everytime you spoke, I watched the demeanors change of congressmen, congresswomen, senators, representatives, lobbyists, aids, political advisors, the hospital CEO, PR teams…they all felt it…they all saw it.

You my child shine so bright.  There is something about you.

I am preparing myself for an insanely packed few days because you, yet again.  Will not let anyone put limitations on you.  You have some more moments where yes, I am sure, there are going to be plenty of public tears from your parents…

Even tho you didn’t grow up playing this type of ball, you did have a small taste for it the year of your last big hospitalization.  I didn’t ever think you would go back to it.

But I have watched you put in the time and dedication, these last 2 years and its paid off!!!

Ezrah May, our little miracle, number 14 (just like her mama was) will be playing in the Clarke Cochrane Christmas Classic Basketball Tournament.  As a VARSITY player.  

First game is tomorrow @ 7.  If you want to cheer our girl on and her brother, who is stunt guy on Cheer.

But Ez, truth be told whether you made Varisty or JV, played the whole game or learned the character-building seat of the bench.  We would have still sat there in tears.

You want to know why?  Because what you are experiencing today and what the doctors hope we can keep experiencing with the furthering of drug research, trials (many that you have been a part of), we don’t take a single moment for granted.  We know this last year has been a complete miracle.  Baby girl, it’s going to be pretty amazing watching you sit bench or play your heart out!!!

I wrote down in my journal the song that kept going in my head while I walked the streets of DC watching my 14 year old, embrace such big moments like a pro.  And I can’t help but smile that when I started to write this, the song came back to me again…

“this little light of mine, I’m gonna let it shine,

This little of mine, I’m gonna let it shine

This little light mine, I’m gonna let it shine

Let it shine, let it shine, LET SHINE”

Shine bright Ezrah May!!!!