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.


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.


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.