Tag: #gratitude #newviewforpan

Golfing Glory

Monday, April 29, 2019 was a beautiful day.  Crisp air made the red BMW at hole 7 sparkle as it awaited a hole-in-one that never came.  It sure was fun trying.

Supporters drove as far as three states to attend our inaugural golf outing.  Tee markers showed the generosity and laughter was heard along the green.

The love and dedication of our organization and those who support our efforts is overwhelming to witness.

Monday was no exception.

While drinks flowed and friendship was visible on every cart, our hearts are heavy with the mission we seek to attain.

Kelsey developed a new limp over the weekend to remind us once more of our why.

We are constantly reminded of our why and thank those of you who care about it, too.

Our gratitude goes out to all who helped us make our inaugural event one we will continue as an annual outing.

 

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.

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.

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

INAUGURAL GOLF OUTING

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!

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.

Golfing for a Cause

In the midst of questions and concerns, we find hope in our generous family and friends.

Our inaugural golf outing is fast approaching.

If you are interested in attending, making a basket for raffle, or donating something for a basket, please let us know.

We are grateful for you.

Click on the link below for more information:

Golf Outing

Eight, Please be Great

In a few short days, we turn the page on another year and hope for a great year of eight.

Seven has been challenging, to say the very least.  Though we have been showered with love and support, questions remain unanswered, therapy options are still in conversation, and the unknown overwhelms us at times.

We look behind to another year of lesions, biopsy scars, and pain.

We look behind for joyful moments and laughter that have kept us whole.

We look today into the eyes of a child full of joy, uncertainty, and love for all she does.

We look ahead craving hope and answered prayers.

May eight be as great as she wishes…

May all of her dreams come true…

“Am I fat?”

Body image and confidence can be a struggle at any age.

Impeccable words and explicit attention to building confidence in our children is incredibly important.  We work hard to craft language that helps our children feel strong and healthy, along with encouraging exercise, activity, and healthy habits.

Tears of anguish brought the house down on this topic the other night.

“Am I fat?” was the question because a young man in Kelsey’s class said she was fat and she was deeply upset by his inquiry.

“Of all the challenges I have right now, I do not want fat to be one of them,” was her eloquent expression stunning us right there before bedtime.

Teaching our children kindness and love could never be more imperative in our world.  Helping our children understand to be kind and full of love when someone tells them otherwise is more difficult than we imagined as parents.

Steroids cause a moon face and a puffed look that an eight year old child cannot help but misunderstand.  His comment may have been with ill intent or perhaps it was simply innocent.  Either way, we want our children to love themselves for who they are and never let one feature define the young men and women they will be today or become in the future.

We call her strong and brave.  Of all the challenges she faces, those are the words we hope she sees when she looks in the mirror.