The kids facetimed with me tonight, and even though she was half asleep, when Sunley heard her brother’s voice, she yelled out, “Ruger!” It was the sweetest thing, so they got to talk for just a little bit until Sunley started hurting again.
We are so impressed with the staff here, as always. It’s amazing to me how many people remember Sunley, considering how many patients they have over the years! It really speaks to their compassion and their dedication to do good work here. Sunley is very loved, and that makes her parents feel very loved.
I have already started decorating her room, although we hope to move out of ICU in just a couple days. Having a sweet, happy space is the only way I know how to help Sunley, so decorating is usually one of the top priorities. I wrote this sometime last year, feeling all of the frustration of not being able to do more for our little one:
I wish I was an artist
So my feelings I could paint
When I watch my children suffer
And all I can do is wait
I wish I was a doctor
So I could understand the words
They use to justify the wounds, the pain, and all the hurts
I wish I was a funny clown
I'd always make you smile
Even in the hardest journeys
With never-ending miles
I wish I was a dragon
With a cunning mouth of fire
I'd fly you far away from here
To wherever your heart desired
I wish I was a scientist
Who fixed all the broken things
You never would have worn the scars
Or had a single scary dream
I wish I was the tallest tree
Up which you'd come to hide
We'd spend the day with yellow birds
And never go inside
I wish I was an angel
I'd whisper sillies in your ear
I'd guide the hands of surgeons
And show your eyes that God is near
But here I sit, just your mother
Wishing there was more that I could do
I'll say it more than you can stand
A thousand I love you's
Just your artist mother
Hang some decorations
Just your doctor mother
Gather information
Just your funny mother
Sing some silly songs
Just your dragon mother
Tell the doctors when they're wrong
Just your science mother
Fundraise to find a cure
Just your tree branch mother
Make you feel secure
Just your angel mother
That's the easiest to be
Cause when all is lost and stripped away
God is just so clear to me
{ Time to move mountains, sweet girl }