I am with Lulu at Children’s this week for more treatment. She’s been the life of the party here, and hosted her own rainbow fiesta at rounds this a.m. One of our favorite docs brought supplies for her to decorate her room in a rainbow theme, and she made each doctor a rainbow drawing. She also gave away bead necklaces and leis. It was so cute and, although the toughest round is still ahead, it reminded me how very far we’ve come in 6 months.

Hubby Jimmy’s gone for 3 days this time, so he will get back tomorrow when we hope to be released. I have friends stopping by with dinner each night we are in the hospital, which helps tremendously in passing the time. If everything continues to go well for Lulu, we are planning a little family camping getaway this weekend. Cabin camping, no roughing it for us right now!

Max has become an adopted family member in some of our friends’ homes. We are eternally grateful for their generosity. He’s still very quiet about what’s happening with his sister, and I sometimes worry that he’s stuffing it all. – but he surprised and touched me last week when he told me there was a song that always reminded him of Lulu. He quoted some of the lyrics which proved just how deeply he understands. I bought and played the song on the spot. It is called “Rise” :

I used to be afraid of giving up
The road was just too tough
Out here on my own
My path was so alone

But now I see clearly
Everything within me
Is reaching out to the sky
I can see the world with open eyes

You can’t let it pass you
Just take hold and grasp it
Now’s the time to take a chance
With the strength of a thousand men
Climbing to my feet again

So dry those tears from your eyes
And everything will be alright
You know the rainbow’s just in sight
Dust your wings off as you rise
If your heart feels overwhelmed
Just know you’re never by yourself
Put your hands in mine, hold your head up high
And together we’ll rise

That’s what left your head up to the sky
And find yourself asking why?
Never see them out at night
With the hardships of life

But faith is where my heart is
Let energy replace my doubts
Won’t my trials get the best of me
I’m marching forward towards my destiny

You can’t let it pass you
Just take hold and grasp it
Now’s the time to take a chance
With the strength of a thousand men
Climbing to my feet again

So dry those tears from your eyes
And everything will be alright
You know the rainbow’s just in sight
Dust your wings off as you rise
If your heart feels overwhelmed
Just know you’re never by yourself
Put your hands in mine, hold your head up high
And together we’ll rise

Together we can do anything
We’ll rise
We can make it through anything
We’ll rise
Together we can do anything
We’ll rise, we’ll rise, we’ll rise

You can try to hurt me, doubt me and desert me
I feel the will of kings, with my mind I’ll build the sea
And you know a tree will grow and take me in
To safety’s arms, I will descend

So dry those tears from your eyes
And everything will be alright
You know the rainbow’s just in sight
Dust your wings off as you rise
If your heart feels overwhelmed
Just know you’re never by yourself
Put your hands in mine, hold your head up high
And together we’ll rise

Together we can do anything
We’ll rise
We can make it through anything
We’ll rise
Together we can do anything
We’ll rise, we’ll rise, we’ll rise

Yeah, I was tearing up too. Jimmy listened with us, and it was one of those moments when our bodies were pulled powerfully to the earth, and we were completely grounded and accepting.

I’m feeling, dare I say it … Hopeful? Please knock on wood as you read this! I think hope is the difference between thriving and existing. In any circumstance.

Love,
a.l.l of us