Category: Uncategorized

“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.

Overload

Daily injections, steroids, and three other medications have merely helped instead of ridding us of our current worry.  New marks appear and we are left with more questions and lingering concerns.

The weeks have been long and tough to take.  The spirit of the holidays has kept up grateful and hopeful of all that we do have.  It has not been easy to endure at all times.

…not easy at all.

Then, this evening news hits of another potential worry and to quote Kelsey through some of her pain over the past few weeks, we “just can’t.”

We pray this holiday season offers you peace and joy.  We pray for resolution and answers as we work through ours.

Emotional overload is an understatement.

Giving

Giving can be a challenge.  Giving of time, giving of money, and giving of energy takes a toll on us all at various points.

Giving Tuesday was yesterday and our efforts alone on this charitable day raised almost $7000 for our non-profit organization.

Perhaps this support (following our most successful gala to date) came at a perfect time as our patience and faith have been tested during the course of the past months in virtually every way.

Then we saw the smiling faces at the gala of those who cared enough to support our efforts.  On giving Tuesday, we surpassed our goal by 3353%.  Though it is not the million or so we need to support the research efforts necessary to move research and therapy options forward for dada2, every dollar counts.

Our first gala came at a time when Kelsey’s arms were full of inflammatory markers and inexplicable red nodules.  Our third gala came at a time when round, red lesions lingered even with intense treatment and therapies.  We are trying to remain strong and appreciate all of the many who supported us over the past few weeks with words and donations.

We ask you to mark your calendars for November 23, 2019 and hope that our fourth gala does not have us facing so much uncertainty.

Gratefully,

Kelsey & Kelsey’s Kaleidoscope, Inc.

Wrong

Tonight felt wrong.  We went to bed with a child who could not walk or get up from the couch.  We were unable to receive medication due to a holiday, we continue to wait for a prior authorization for another, our incredible doctor has fallen ill herself, and we are just plain tired.

We are tired of feeling wrong and tired of not knowing why.

We seek answers but find that our decisions can be wrong.

Our hope drives positivity, but it too has a breaking point.  Sometimes our hope overshadows the truth.  Sometimes the truth takes a hold of our hope.

A morning judgement call felt wrong.  Instead of fixing it immediately, it was an all day point of worry and concern.   If anything, we always trust our instincts and feel we do right by our child.

Today, we were tired and tonight we are afraid.  We were blinded by what we hoped we saw and scared of what no one can tell us.  We feel it is wrong that the biopsy results have still not been conveyed to us.

Our medical team supports us and we are incredibly grateful to them for that care.  We are grateful for our committed doctors and their evening responses to our concerns.  We just don’t feel they know enough to ease our fears.

That feels wrong.

We are not always sure what is wrong, but we certainly wish we could make it right either way.

Rare

Rare is defined as “marked by unusual quality, merit, or appeal : DISTINCTIVE” and trust us, the life of a rare disease can be described as distinctive.

The rare and beautiful wonders of the world capture a sense of peace and awe when viewed.

The face of a rare disease or a young woman working her way through childhood with a rare distinction is heartbreaking.

A relative recently stated this journey as the unimaginable.  That would accurately describe the acute pain and uncertainty of these inexplicable lesions and the new limp that Kelsey is just smart enough to conceal from anyone who does not know her well.

Rare is never a word we want to use for our child’s childhood nor our child’s health.  Yet, here we are stunted with emotion for the lack of understanding these lesions bring to some of the brightest minds in the world.

Rare is lonely, rare is an emotional drain, and rare feels distinctively raw right now.

Please support our efforts and help us raise funds and awareness at our third annual gala: TICKETS.