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

Is that okay?

Weekends with two young children can best be described as a constant scheduling conflict.  Kelsey has lacked interested in group sports until this season, and to our delight, she has started basketball.  Her confidence has soared and her friendships on the team have started to blossom.

The first few weekends were full of joy and smiles when she made a bucket or missed.  There was always a chance to rebound.

Last weekend, a parent even came over from the opposing team to say he could watch our daughter play all day.  “She is always smiling.  She really loves it out there,” he noticed.  We noticed, too.

This weekend, when a slow pace ensued and a lack of interest was displayed, it was our first sign that something was happening below the surface.

A two hour nap followed this forty minute game and our alarms were on high alert.

We check in with our doctors to forge a positive plan.  A restful day is hers and a great night of sleep is had.

After sleeping in until 8, she wakes and laughs with her family.  Then she turns to say she would like to take a nap at 9. “Is that okay?” she asks because she knows that it is always okay to listen to her body, but she also knows that it is another signal.

Is that okay?  We pray it will be.

Emotional germs

There are so many germs surrounding us every day now.  Can you catch emotion, uncertainty, and worry, too?  Maybe emotion is as contagious as a virus?

Worry seems to be our word of 2019, though we have such high hopes for the year ahead.  Worried that warmth is more than viral, belly pain is more than surface, and all we do is just not enough.

We all need an outlet and a support system.  However, when children worry, how do we know that their worries are truly eased?  There is no antibiotic strong enough for our emotional fuel as parents.

It comes with parenthood, we guess.  When we consider how deeply our parents still worry about us as adults.  Ours, in particular, have caught the emotional virus, too.  Their worries may be harder than ours at times because the day to day knowledge is often lost.

The constant cycle of worry, it seems, will continue to run wild for now…

We pray and hope it escapes as the winter germs and blues fade, too.

 

 

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.

World Kindness Day

Switching medications and using steroids as a bandaid for what is happening below the surface is wearing us down.

Celebrating the tiny moments is what keeps us going.

Though World Kindness Day has  passed, we saw this for the first time today.

Timing is everything.

Excellent ideas baby girl:

 

New

A warm weather New Year brings hope at every corner.  The last week of 2018 was one that needed a day of sunshine and a glimmer of hope for our household.  It ended with a swollen knee and pain that preceded our dreams.

Our holiday break was full of so much family and friendship.  There is so much to be grateful for in our lives.  However, it was also filled with pain and a great deal of unanswered questions for our daughter.

‘New’ brings hope and we all feel that on January 1.  A fresh start and a new day to make new dreams come alive.

New for us has also meant uncertainty, swelling, and the inability to bear weight.  It is a ‘new’ that only prednisone has worked wonders on so far and one that resembles a stiff, soar, and immobile little girl.  New should mean bright, not swollen joints without reason.

Among the many wishes we have for the new year and the new beginnings we look forward to watching, you know what our top priority is as the page turns to the second day of the bright horizons and the promises that we hope new brings to you.

Merry Worry

Christmas morning was truly magical.  The joy on our children’s faces was one greater than usual and the amount of gratitude and blessings we felt in our hearts were many.

It is always difficult to sleep on Christmas Eve as once we spent the evening awaiting a blood transfusion.  Seven years ago, but always a time hard to forget on such a memorable evening.  Though grateful to sleep in our own beds, each Christmas Eve, it hits us one way or another.

This year, Christmas started off blissfully different.  A 4 AM wake-up and sheer bliss filled every inch of our home.  Squeals of delight were everywhere.

Then around 11AM, we could not deny the limp.  Holiday cheer waned…

By 2PM, we noticed a lack of motion and all over stiffness.

By dinner, we debated the ER.

Our hearts remain heavy, yet hopeful, tonight.  We hope your day was merry and bright.  We ask for a prayer and a wish for Kelsey tonight.

Holiday Hope

Holiday hope and festive wishes fill the air.

Our wish is that the season of magic extends to our home to bring renewed hope and health in 2019.

May your days ahead be merry and bright.

May all your holidays be bright.

Evaporation

Energy, like all things, has a limit.

Mental toughness and maintaining our “normal” is always our desire.  This week, it seems that our energy levels are depleting and evaporating by the second.

A struggle to walk for a child and daily injections have taken their toll on our family.  We still await answers and we struggle with the wait immensely.

We fear the unknown and wish our fears could evaporate.

Meeting families from around the world recently with the same struggles as ours was both humbling and scary.

Their stories are the same, their symptoms echo Kelsey’s, but underneath the surface right now, something is happening inside of a tiny body that cannot tell us why.

Another medical challenge increased its force this week and our limits are being tested.

Our energy has evaporated.

We hold on to hope but fear it will evaporate, too.