Month: April 2019

This is Me

The showstopper, This is Me, brought down the house and led to few dry eyes at a recent chorus concert.  Our first every concert of this age group was filled with wide-eyed children singing:

“When the sharpest words wanna cut me down
I’m gonna send a flood, gonna drown them out
I am brave, I am bruised
I am who I’m meant to be, this is me
Look out ’cause here I come
And I’m marching on to the beat I drum
I’m not scared to be seen
I make no apologies, this is me”
This is Me.  The power of broken parts and scars struck a cord with#thisour family along with the likes of all present.
This weekend, we opened the New England Journal of Medicine to read, Treatment Strategies for Deficiency of Adenosine Deaminase 2.  This is Me resonated differently reading this article.
Grateful for attention on this grand scale in a publication read by so many, we could not feel a strange new chorus…
This is Kelsey and she is simply who she is supposed to be:
Look out ’cause here she comes
she is brave, she is bruised
she is who she’s supposed to be
This is She.

Dream Big

This week, our well visit led to Kelsey conversing with our doctor about how she hopes to be a professional basketball player and a doctor when she grows up.  We always encourage our daughter to dream big and hope she always aspires to do so.

Anyone who couples a headband tiara with a dry fit basketball tee deserves to follow her dreams.  Right?!

We smile and laugh as we dream of the future for our children, with our children.

Then we reflect on recent news and feel it hard to process reality sometimes for those challenged by Kelsey’s disease.  We learned about another patient whose marrow transplant donor backed out.  We are hit hard with that reality. We pray for that family and hold on tight to our hope for our daughter and all the other children we know who suffer.

Another family reached out to ask us about their challenges to discuss treatment options. We try to stick together because learning from others gives us strength and comfort. We pray for our friends near and far and wish them well in their treatment plans as limited options exist right now.

We send positive vibes to anyone who struggles to dream big today, and we continue to hope that someday all of our children’s dreams will come true.

Four Steps for Success

Spring has sprung and Kels has been practicing her basketball shots for a few minutes each night.

Tonight, in a cotton floral dress and sparkle shoes, she was determined to take a few shots.  Her will and desire to reach goals always inspires us.

She was making one basket after another and saw our pride as she swished in this outfit (made for anything but basketball).

“Want to know my secret?  There are four steps to success here,” said the sage.

”Bend your knees.

Eyes on net.

Focus.

Follow through.”

On our way inside, she reminded me that those four steps are always with her.

”My family bends for me, keeps their eyes on the prize, never loses focusing, and they keep following through.  Do you think that will bring me a cure someday?”

We all hope those four steps get us there.

Let Your Wings Fly

Busy. Complicated. Life.

These days are flying by us all.

After a few recent days where we all faced small challenges, the following was found on the counter to “brighten our days.”

Celebrate the small moments.

Let those wings fly!

Be as HAPPY as possible today.