Our Dearest Avery,
Today marks four years. Saying goodbye to you wasn’t anything we were ever ready for. We had hoped and prayed for a different outcome for your battle with DIPG, as surely you could fall into that less than 1% of survival. We tried everything there was available to us then. EVERYTHING.
We asked you to take strange medications and we encouraged you keep pushing through any physical therapy we could find, even while your body was failing you.
You didn’t like any of it, but you did it because we asked you to and you believed in us.
We bought you patterned eye patches so you could feel your same fashionable self, because those plain tan ones you hated.
We purchased temperpedic pillows for your bed and your wheelchair to make things comfortable.
We made lists and lists to satisfy your goals and desires to accomplish as much as possible each day.
We allowed you to make the rules, and we followed and cared lovingly beside you all the along the way.
We took your paralyzed body swimming and down waterslides, because you were a thrill seeker and sitting around wasn’t in your repertoire.
Gpa made you a wheelchair ramp for the house so you could easily come in and out of the house when you lost your ability to walk so soon.
You traveled to your dream vacation with Make A Wish, to Disney World.
You became the honorary Princess of Arendelle, when Kristen Bell called YOU!
We had a special brace made for your failing right hand, and right foot, to help you try and rebuild strength.
We scoured the internet for special creams, hairbrushes and comfortable clothes to help aid in your daily care with the least amount of added pain.
You were the recipient of a special Doug Baldwin visit at school and your fundraising event!
We helped find the prettiest and most comfortable wheelchair for you because you were not satisfied with basic boring black.
We worked with aids at school so that you could continue to go to class just like all the other 1st graders.
We made your meals of choice, and listened to playlist after playlist of all the songs you loved most.
We researched medical trial after medical trial hoping for an open door that you were eligible for.
We brought you countless times back to that place, the place you hated, the hospital, for endless pokes, surgeries and palliative “treatments.”
We started home hospice care to allow you to be at home, your treasured place.
We had a massage therapist come and give you massages each week.
I learned how to flush and clean your picc line so that this was easier and we could be at home.
Through it all, you still believed in us.
We ordered all the “what-if” supplies the experts suggested we might need if your last days came.
You lost your voice and your ability to laugh and smile, and yet you still managed to communicate with us.
And then, one day, a day all too soon for us, we had to say goodbye… We whispered in your ear for you to go, and run to Jesus.
And again, you believed and trusted us.
I hope and pray you still believe in us and the work we are doing in your honor, love.
In the four years since you have been gone, there are more options available to children with this disease than you had and we are helping make some progress in the right direction with the work we do with other mommies and daddies like us.
We share your story and your pictures anywhere and everywhere.
We love you beyond measure and miss you terribly.
There are so many milestones ahead you will never experience, and that breaks our hearts too.
You are always in our hearts.
We love you forever.
Mom and Dad