Month: June 2017

Another Year

Today marks another year for me.  

Each celebratory day means a great deal to me in terms of presence and not presents.  I am trying to truly make the best of every day and cherish all that I have surrounding me that is joyful.

The past year has marked the start of Kelsey’s Kaleidoscope, Inc., advances in research around the globe on PAN and the gene deficiency causing the manifestation for Kelsey, dada2.  In addition, over the past year, we have had the chance to connect with other families and other children who suffer as Kelsey does.

As a family, we have endured daily injections, four hospitalizations, not to mention the typical day-to-day challenges: the boy who was mean on the bus, writing the number 5 properly, mastering 30 subtraction problems in 90 seconds, and learning to tie shoes.

As a mother, I witnessed the magic of a child who connects print to meaning and the endless possibilities that open as a result.  My son learned how to play the violin and I must admit, hearing him play Twinkle Twinkle Little Star brought me to tears.  I met a mother who lost her son in a tragedy and watched her strength.  She taught me about her Choosing Love movement that was born as a result of her suffering.  

I have laughed with my kids, yelled at my kids, and snuggled with my kids.  Every morning hug and afternoon homework struggle has been worth it because it has been uniquely mine.

As a wife, I have learned to be more open and appreciative.  Though I cannot change circumstances, I can change how I talk about my feelings regarding them with those I love.  In truth, I learn something more to love about my husband every day and I am grateful that he gives me strength, confidence, and the support to follow my personal and professional goals. 

This year, I hope for peace, love, and happiness for all of the people who I know and love.  

If we let it…

Perseverance; the will to do anything you set your mind to in life.  This is what Kelsey teaches me every single day along with patience and gratitude.

When Kelsey wanted to read, she tapped every sound out on her hands just as her incredible teacher Mrs. L. taught her to do in school.  Kindergarten closes for Kelsey today.  What a year it has been for her.  Hospitalizations, scares, and daily injections aside, Kelsey now reads with conviction and expression.  She has far exceeded the goal she set earlier in the year.  She is delighted to share her connections with print and the strides she has made this year.  If other kids are doing it, so can I.

When she swam in the pool with her cousins and they could swim without a life-jacket or a puddle-jumper, that strong and determined will set in yet again.  Off went the life jacket and with close supervision, off it stayed.

The power of the mind, the will we all have, and the pulse it has over us all.  It can make or break your day if you let it.

I recently heard a speaker who brought me to tears with his story.  He was illiterate at the age of 15.  At 32, though dyslexic, he spoke in front of 200 guests about the power of a positive attitude.  While he spoke and encouraged, I thought of Kelsey.  Decades apart in age, they share the same drive to do whatever they will to do in life.

They could teach us all a thing or two.  We should all listen a bit more to the universe when the positive vibes around us are high.   They can easily change with the weather and we can all become focused on what we do not have, what is wrong, or what another person or professional has that we desire.  When we reflect on ourselves and all of the good we possess, the power of positive will set in and change our view.

I have stopped to do so several times recently and the view looks a great deal brighter as a result.  The negative can allure us, drawing us in if we allow it.  The positive can also enchant us and motivate us to believe in ourselves each and every day, too.  As Robert Frost reminds me, “Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.”

Let’s travel that road more often together.  

Just Like That

Just like that it comes back.

The fear, the worry, the why.  Of course it never actually leaves.  I’d kid myself to say so.  However, waking to see a few red patches on your daughter’s arm does not just signal an allergic reaction or a rash.  You are never sure what the marks or lesions mean but you never stop thinking about them.

When they spread over the extremities and down to the legs, the night is uneasy, the rote and emotional calls are made though you try to remain calm and steady.  Blood-work is ordered and the waiting game begins once more.

Daily injections start to be safe.  

It sure was easy to forget them and how difficult it was to start the day off with that burst of that painful necessity.

I know that if is helps, it is necessary.  I am immensely grateful for the swift response and concern of Kelsey’s doctors. They ease my mind, listen, and consider what is best for us all.

Sheryl Crow said it best, “No one said it would be easy, but no one said it’d be this hard.” 

Ticks

Brad Paisley sings a song I’ve always enjoyed with a line that states, “I’d like to check you for ticks.”

Brad, though I know you will not read this, I will never hear that song the same way again.

This weekend, I saw two of those little buggers up close and personal.  If you have pets, you may have had the pleasure of seeing them before.  However, when I saw one in the center of my daughter’s belly, it sent me into a tailspin.  It was a calm and internal tailspin to keep her calm and comfortable.

Those little creatures are odd, eerie, and exactly what you have read about or heard about in a Public Service announcement.  Somehow, through a barrier of spray, one tick made its way up to Kelsey’s belly and one found its way onto Brendan’s.

I know that I am not calm about most issues regarding Kelsey though I make a conscience effort.   This one made me frantic inside.  We removed our new-found friends with tweezers and saved them (just in case).  We doused the locations with alcohol and read about ticks on google for the rest of that evening.

We alert the docs, pray, and try to stay calm for ourselves and for our kids.

As always, we pray, remember to breathe, and hope for the best day in and day out.

Brad, I have no interest in checking for ticks again.