This was my tiny baby.
My firstborn.
Our first Christmas as a family.
This was before SMA.
Before “medically fragile” or “profound disability.”
Before terminal and dying and no future together.
This was a scary time of not knowing what was happening.
Of worry and fear.
But also hope and expectation of doctors being able to help and it not being so final.
This was hospital life.
This was joy and making the most of things, like a take-out dinner in the hospital hallway.
This was appreciating the kindness of strangers, like Santa visiting on Christmas Day to lighten the spirits of us all.
This was learning to live in the moment.
To rejoice in small steps of progress.
To dig deep when in the midst of crisis.
This was gratitude and perspective.
Feeling blessed to have a Christmas together.
Knowing so many around us were leaving without their child in their arms.
This was the beginning.
Of seeing things in a new way.
Of learning the depths of NEVER GIVE UP.
Of finding my voice and how to use it.
Of focusing on the good in the overwhelming.
Of that good always being our darling Gwendolyn.
If you are in the hospital during the holidays,
I hope that you can make memories and cherish every second with your loved one.
Even when it is a scary time.
This likely feels more bitter than sweet.
And I understand.
But there is still so much sweet here.
When you feel overwhelmed just know you are growing under the weight.
You are changing.
You are learning.
You are becoming.
And I hope for you that you lean into all the ways this new life makes you kinder.
More empathetic.
More aware of the whole world and not just the shiny parts.
This is life, too.
And the holidays exist in hospitals.
If you know someone in the hospital,
I hope you will remember them.
Find a way to make them feel supported and loved.
Help them make those precious memories.
And become who they are meant to be.
NEVER GIVE UP.