I know that I should be grateful.

“I feel like I’m starting to lose my wife again” says Brendan candidly Saturday morning after I finally sit down with my coffee in silence.

We begin to dialogue about the agony a daily injection is now imposing upon our daughter’s life.  Once a week was difficult enough for me if I am being honest.  It consumes my slumber the evening before.

I wake up with a sense of urgency every Wednesday morning and painfully go through the motions.  I sneak down to get the medication out of the refrigerator before Kelsey wakes.  She wants to immediately get it over with and I do not blame her at all.  If the needle does not sit out, it will cause an even more painful and numbing scream than she typically produces.  If you heard the screams, that would be difficult to understand.  Though, sadly, it is true.

I want to be optimistic.  I want to be so grateful that the National Institute of Health saw us as an emergency case last week and helped us through this six month flare yet again.  I want to smile at the notion that this newly prescribed daily injection will help my baby girl get back on her feet.  I should be grateful for this medical advancement.  I know in my heart that I should.  I want to keep smiling and I WANT with everything inside of me to be myself, I really do.

But I just feel sad.

Starting my day by injecting a liquid into my daughter that causes shrieks of sheer agony and visible indicators of pain and swelling once complete is not helping.  Sure, these marks are hidden away by her clothes and her optimistic attitude, one I have worked so hard to show her through the face of all of this adversity.  But it is weighing heavy on me six months into this flare, and I am just tired of smiling.

When she asks questions like, “God, why did you do this to me?” and lays up at night with sentiments like, “I am just thinking about how much it will hurt me in the morning.  It’s keeping me up and I’m sad,” it weighs on me like a ton of bricks.

Today, I will have to inject her twice.  I am literally losing sleep and focus when I should be wrapping gifts and grateful.  I know that, but I can not help but hear a holiday song and think about the moment when that will happen in a few days and sit for moments on end picturing how much she will likely scream.  

This Christmas, my wants are few.  What I desire is a new sense of hope and patience through this disease.   I thought 2011 was the hardest holiday season we would face.  We were torn apart as a family and placed in isolation in a children’s hospital with a blood transfusion necessary during the wee hours of Christmas Eve.  I remember looking out the window while sitting up with Kelsey at 3:43 A.M. that Christmas Eve hoping to see Santa’s sleigh and wished it was all but a dream.

Five years later, that part seems easy in retrospect because now it is the day to day.  The little things like rushing to attend dance class after work and school, only to arrive and have Kelsey burst into tears in the parking lot that she was too tired.  She could not go in even though she wanted to dance.  She was too tired and just could not make it through the class.  How can you know that at five?  To be able to say that while standing at the dance school must have been very difficult for her to say.  Dancing brings her so much joy.  

Of course we drove home and I cried the whole way.  Without much dancing in her life, she still completed her routine at her Holiday Show.  The daily injection helped her stand tall and proud while doing so.  Her dance school, Jazz Hands Dance Academy, also donated $600 to Kelsey’s Kaleidoscope through their holiday concert proceeds.  It was an amazingly powerful moment when they called her up to select winners and explain her cause.  Kelsey smiled and said, “It’s a disease.”  That disease has caused us so much pain this year. Jazz hands has been the source of big smiles and squeals of delight.  We certainly hope that there is much more dancing in 2017.

So today, I know I should be grateful for this daily injection of energy and positive for my daughter.  I am sincerely going to try to get there: for her, for my son , and for my husband.  

Sometimes, things are just easier said than done.

Leave a Reply

Your email address will not be published. Required fields are marked *