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.

 

Ten Lessons

Ten years ago today our lives changed forever as we welcomed a beautiful baby boy into the world.  Ten years, a decade, has passed in the blink of an eye.  Lessons have been learned abundantly through the years.  These stand out as the ten most important:

  1. Life changes. Thomas Rhett sings the lyrics well.  Take each day as it passes. Some days you will yell, some days you will cry, some days you celebrate, and no two days are the same. Celebrate today and take the ups and downs as they come. From diapers to puberty questions, life changes. Embrace it all.
  2. Family is everything. We have not been strangers to challenges, nor triumphs. At the end of the day, our family is there.  No questions asked.
  3. Laugh. Anxiety can build at any age. We rush to say, you’re young, enjoy yourself. Kids can be complicated and challenging. Laugh with them and listen to them.
  4. Be present. Put the phone down and listen to your children. Play with them and let them know you are there for their stories, big and small.
  5. Show up. We do not recall each game or event our parents attended but seeing the way our children’s eyes find us on the field let’s us know they are watching.  They know we are watching them.  Win or lose, we show up and we celebrate their effort either way.
  6. Make the milestones memorable. We missed our child’s first Christmas because she was hospitalized.  Since then, we enjoy every celebratory milestone and make some traditions up to celebrate just because… Missing one makes each one to follow more important to remember and cherish.
  7. Don’t be so hard on yourself. We all make mistakes. Get back up and be vulnerable.  To your children, you are still the best.
  8. Be grateful. We are grateful for all we have and want our kids to look on the bright side, strive to be the best version of themselves, and celebrate their natural talents and strengths.
  9. Capture the moments. Traveling through ten years in photos makes it all seem more surreal (& real!). Technology has made it easier today than it was ten years ago to capture the moments with clarity for today, tomorrow, and the future.
  10. Don’t Blink.  Kenny Chesney’s words bring a tear to my eye because ten years have gone by in a blink.

Here is to listening, loving, and savoring the moments.  Happy birthday to our baby boy.

Salt

Experimenting is a new favorite past-time for Kelsey. She is either baking with chocolate, making slime, mixing pantry products, or combining kitchen ingredients for a variety of fun and curious reasons.

A recent day of baking and cooking led to some interesting conclusions from our persnickety girl.

Today’s ice cream sandwiches smelled delicious until they were ready to taste. The amount of salt was difficult to stomach, and we realized our error with the butter after a review of ingredients.

Dinner was the opposite. The taste seemed to be missing something. It was, most obvious to our connoisseur, salt.

Later that night, she equated our salt disparity today to her medication recently.  “I guess I’m like a recipe the doctors are trying to figure out,” she pondered.

And continued, “some think they have the right medicine and doses, but it is missing something.  I hope they figure out the salt for me soon.”

As do we.

____________________________________________

To support our salt intake and enjoy a fun event, consider attending our inaugural golf outing:

INAUGURAL GOLF OUTING

International Women’s Day

To celebrate International Women’s Day and Women’s History month, Kels worked on a project at home.

Together,  we colored and read about a few special women.  Then laundry and chores consumed our Saturday.

A few hours later, the page was more closely examined and revealed the following:

When asked why she added herself, the answer was simple and direct, “there was an empty box for me to use even though I’m still writing my story.”

Smart girl.

Here’s to strong woman- May we know them, may be be them, may we raise them.

To all the woman still writing their stories, those who fight battles every day and still strive to be the best versions of themselves, we acknowledge you and wish you Happy International Women’s Day (a few days late).

Oh, the Places…

Oh, the Places You’ll Go! is a family favorite.  Recently, while reading aloud before bed in anticipation of Dr. Seuss’s birthday, we thought, not only of all the places we hope our children will go.  However, we also considered Oh, the Places We’ve Been…

You’re off to Rare Places!
You’re off and away! (Like it or not)

You have genes in your body.
and a rare disease to face
You steer yourself
in directions you don’t choose

You’ll look up and down google. Look it over with care.
About some you will say, “I don’t want to click there.”
With your legs full of scars and your joints full of pain,
you wish for the smartest to keep you all sane.

And you may not find any
who’ll want to treat you.
Rare can scare doctors
Rare means something new.

OH!
THE PLACES YOU’VE GONE!

You’ve been admitted and poked!
You’ve had labs and IV frights!
You’ve transfused Christmas Eve right through midnight.

Sometimes, you’ve lagged behind, because you’ve lacked the speed.
You’ve cried with the gang and hoped for a new lead.
Wherever you’ve traveled, you’ve wanted the best of the best.
Wherever you’ve gone, you sometimes just want to rest.

I’m sorry to say so
but, sadly, it’s true
that Hang-ups and Bang-ups
have happened to you.

You’ve had some unpleasant bumps.
And you’ve been in a Slump.

And when you’re in a Slump,
you’re not in for much fun.
Un-slumping yourself
is not easily done.

You have been to a place where the docs are not sure.
Some think to test this way and others want to treat that.
A place you could biopsy your groin or your chin! Thigh or ankle, please carefully pick.

Simple it’s not, I’m afraid you will find,
for some med-maker-uppers to make up their minds.

Sometimes you move toward a most useless place.
The Waiting Place…

…for people just waiting.
Waiting for a call to come
or a lab to process
or waiting around for a Yes or a No
or the results to show.
Everyone is just waiting.

Oh, the places you’ve been!
But on you will go
though the needles be foul
On you will go
though your vessels may prowl
On you will go
though the dosage is due
Onward up many
a frightening path, too
though your legs may get sore
and your body feels weak.

So be sure when you step.
Step with care and great tact
and remember that Life’s
a Great Balancing Act.
Just never forget to positively think.
And never mix up your white pills with your pink.

So…
be your name Kelsey or Maggie or Hallie
or Trey Ali Vanessa Anna Maria,
you’re off to Great Places!
Today is your day!
Show your stripes and get on your way!

Rare and Far from the Shallow Now

#rare

Defined as “seldom occurring or found : uncommon.”

When #rare is your normal, you seek comfort in #gaga and #shallow from #astarisborn to show the world what rare can do.  An #oscar performance so rarely gains so much interest and attention that it must be uncommon and it must be #rare.

@BradleyCooper and @ladagaga – an exceptional performance like yours and a speech from @ladygaga reminds our family to keep fighting.  A reminder of our journey is perfect timing as we near Rare Disease Day, 2019.

Rare Disease Day is held on the last day of February each year to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

Building awareness of rare diseases is essential.  Statistically, 1 in 20 people will live with a rare disease at some point in their life.  Many go undiagnosed and few have a cure.

Our rare is difficult.  Our rare is painful.  Our rare is far from the shallow now…

To quote @ladygaga “What it’s about is not giving up.  If you have a dream, fight for it.  There’s a discipline for passion: it’s not about how many times you get rejected or you fall down and get beaten up, but how many times you stand up, and are brave and you keep on going.”

To all those who keep on going in search of a cure and awareness for the rare diseases they face; stand up and keep on fighting!

Kindness Hero

As she sat creating her kindness challenge poster with rainbows, peace signs, and wonder woman in the center, a tune was sung over and over again.  She made up this song because she was so happy and filled with joy.
She sang:
“It’s a sunny day.
It’s a sunny day.
Kindness on my side.
Nothing in my way.”
To know Kelsey is to love Kelsey.  Though she selected Wonder Woman as her kindness hero this year, she continues to be ours.
May you have a sunny day today.