February 16, 2021 - Five Years Later

Our Dearest Avery,

Today marks five years.  

Five. Years.

Just the fact we’re writing this, again, is heart breaking and soul crushing.

But five years? It feels like an eternity.  It feels like yesterday.

It’s impossible to fathom that it has been five years since we sat in your childhood bedroom, the room you went to sleep in each night, dreaming of what you wanted to be when you grew up, only instead, it was to say good bye, those dreams never to be realized.

Five years since mom, dad, Alex, Cade and Addison, and even Coco, gave you one last hug and kiss, where you could see us, where you could hear us, where you could feel us.

Five years since “Good, Good Father” and “Walk By Faith”, two songs that we have clung to for five years, played in your final moments.

Five years since that moment the nurse looked at mommy and daddy, at 11:11 a.m., after your final breath taken here on earth.

Five years since your body left your childhood home for the final time, before your final resting place, the surreal moment as your daddy carried your lifeless body down the stairs, as your mommy followed behind to say goodbye, the ride no parent ever, EVER, anticipates their child taking.

But you did.  There was so much you did during your fight.

You loved, you hoped, you persevered, you inspired.

Medications, trials, treatments, we did everything we could to give you extra days.  You never complained.  You hated the pokes you had to get, the shots, but you did it, because you were a fighter.  You trusted us.

You had plans, dreams, goals.  Big plans, big dreams, big goals.  

All which you pivoted to, of smaller, daily goals, because dangit, you were not going to let this monster named cancer stop you.  

Remember that time the boy twice your age stole your pool noodle at the YMCA? You didn’t stand there.  You perfectly executed your fight back.

Most parents would teach their kids to let someone take their pool noodle, just let it go.  Not me, I knew that kid made a huge mistake.  So like a proud father, I sat back, I watched you calculate in your mind, exactly how you were going to approach him, surprise him, grab that damn pool noodle and let him know, it was YOUR pool noodle.  He had no idea what hit him. But he was in tears. I knew you had it under control. I knew you’d get the last word. I thought to myself “oh, that kid done messed up.” And you made me proud. You did it without violence, but you left a clear message, you do NOT mess with Avery Huffman.

That’s how you were.  Oh, you want to challenge Avery? Bring it on, she relished the fight.  She would fight the fight.  And she would win the fight.

Because, Avery, you won the fight against cancer.  You became cancer free, five years ago.  You were free to run, free to jump, free to be you.  And while we wish so much that it all happened here on earth with us, that wasn’t God’s plan.  

And God’s plan, Avery, was greater than anything we could have even considered.

But still, when you had a plan, you did it.  Your daily lists, your daily tasks, you were determined to do. And if time ran out? We’d do it the next day.

You shared your happiest moments during your scariest fight.  You wanted to make sure mom and dad were doing ok.  You wanted to make sure Alex, Cade and Addison had a memorable time at Disney World on your Make-A-Wish trip.  It was your trip, but you made it for all of us. 

Funny thing- we were planning to go back to Orlando this February.  The plan since Addison was born was 2021 would be the year we, as a family, all went to Orlando and had a trip of a lifetime.  

Then after you passed away, we wanted to make the five years with a return trip.  We would go to Give Kids the World and volunteer, the place that so graciously hosted us on your trip.  We would give back and spend February 16th there honoring you by helping others.  

And once again, life threw us a curveball, this thing called quarantine and covid (don’t ask).  Long story short, there was no Orlando.  And frankly? There will probably never be one.  Because the further away we get, the more we realized that treasuring that family trip that all six of us wanted to take, albeit under very different circumstances, would never be the same without you there.

Every July, your video of becoming the honorary Princess of Arendelle, when Kristen Bell called you, makes its rounds. It’s kind of funny, the last thing as a family that we did prior to quarantine was to go see the Frozen musical.  You would have loved it.

Life has changed dramatically for our family in the last five years.  

You would be 12, in sixth grade, in middle school, probably begging us for your own phone, since, after all, Cade and Alex got one in sixth grade, so why shouldn’t you?

But what else would have been the daily parts of your life? 

Those are the questions we have no answer for. Because, frankly, Avery, you were robbed.

You never got to experience all that elementary school had to offer.  You never got to experience middle school.  There will be no high school or college.  No motherhood or being a wife.

Because one day, five years ago, on February 16th, 2016, at 11:11 a.m., you finished the race you ran here on earth, to spend eternity running with Jesus.

And the hole that our hearts feel every moment of every day, that you are no longer here with us, and it has been five years so you last were, those holes are now filled knowing that you are in heaven, free from cancer, never to experience DIPG, victorious over it and free to be the Avery we so treasured and cherished here on earth.

Avery, you fought so bravely, so fiercely, so passionately. 

The least we could do is to fight back for you.

In the five years since your passing, we’ve moved mountains. There are more to move.  This year, in fact, we went out on our own, and after being a part of other families honoring our children who so bravely fought DIPG, we struck out ourselves and launched the Avery Huffman DIPG Foundation, ready to take the next step of mountain moving.

We are motivated, determined, passionate and driven to keep your fight going for as long as we need to be, so that no mommy, daddy, brother, sister, grandparent, friend, has to hear those horrible words we heard on June 30th, 2015, or experience that final moment on February 16, 2016.

Avery, you have our word- we will find a way to End DIPG once and for all.  We will never, ever, stop fighting for you, sharing your story, saying your name.

You are daddy’s hero, you are mommy’s hero, you are Alex’s hero, you are Cade’s hero and you are Addison’s hero.  And the best way to honor our hero is to fight back the way our hero did.

We love you Avery, beyond any possible words that could be written.

We so wish you were right here with us, physically in our presence.  But you have the best view of all of us, in the kingdom of God, free, healed and whole.

And here on earth, you are always in our hearts.

We love you forever.  We love you for always.

#AveryStrong

Dad, Mom, Alex, Cade and Addison.