Category: Uncategorized

A Four Leaf Clover

Perception.  Happiness.  I guess these are relative terms.

I have had a few moments recently where “Kelsey looks so great” has been at the crux of conversation.  That is how most people naturally perceive Kelsey.  As a result, I see that they truly do not understand that the pain and the disease are hidden deep inside.  

At first glance, Kelsey is a complete dose of sunshine.  I am grateful for that every single day.  You truly cannot help but smile in her presence.  I am guilty of calling her my sunshine because she radiates happiness.

Except when she doesn’t.  When she screams in agony with her injections or shrieks in pain because she cannot stand on her leg.  Most only see the sunshine.  Trust me, that is my preference.

We were recently granted an incredible experience to see a National Park from the air.  We were equipped with headphones to learn as the pilot narrated some of the most noteworthy sites along the tour.

While the overall ride was tremendous and once-in-a-lifetime, some of the most memorable moments came from the underlying voice in the headphones.

The lighthouse was lovely, but even more enjoyable was the tune of “I’m looking over a four-leaf clover” that embodied the moment.

Kelsey sang, hummed, and dazzled the skies with song during our flight.  The words are uniquely symbolic as I read them now:

“One leaf is sunshine, the second is rain.

Third is the roses that grow in the lane.” 

The pilot was a true professional who tuned her out entirely (or pretended too, at least).  However, she added a bit of laughter and a fond memory of that incredible flight for those on board.

No wonder the world sees Kelsey for the happy and energetic little girl that she is, it is what they see.  Her visible layer is sunshine.

The second is rain.  Kelsey’s illness is not one that can be seen.  That is why we began our journey one year ago by launching our website and our foundation.  

The unseen is where the pain lies and where the help is needed.  

Hopefully, our research efforts and your generous support in helping these efforts will lead us to a cure sooner than later to bring the roses that grow in the lane for Kelsey and all affected patients of PAN  and dada2 .  

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.

Sharp Taste

It seems that life recently gave us a sharp taste of reality.  Wednesday mornings are often enough.  We lost two family friends and watched a pop concert turn into tragedy.  

We found ourselves full of sorrow, questioning much, and understanding little.

We held each other tightly, reminded each other how much we loved one another, and shared a few laughs together.

We discussed how we were brave, how we were kind, and how we appreciate one another.  

We smiled longer and hugged tighter.

We celebrated a milestone birthday.

We honored those who served and prayed for their families.

We dreamed and we remembered.  

“Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.” Harriet Tubman

For those who wrote to help The Open Act, we thank you! 

To changing the world and dreaming, one day at a time.

SAVE THE DATE – DESIGNER BAG BINGO- JULY 13, 2017

St. Charles Borromeo * 176 Stagecoach Rd, Sicklerville, NJ 08081

The Open Act – Call for Action

Rare is defined as marked by unusual quality, merit, or appeal.  We live through “rare” daily with Kelsey, some markedly easier than others.   Sometimes it is the familiar that can help our “rare” become more usual.  Today can be that day.

The EveryLife Foundation advocates for the rare disease community in Washington, D.C.  A proposed bill, The OPEN ACT, that would help double the number of affordable treatments available to rare disease patients.    This is a bipartisan bill that is supported by over 220 patient organizations.  If put into law, it could bring hundreds of safe, effective, and affordable medicines to rare disease patients like Kelsey within the next several years.  How?  It provides incentives for drug creators to re-purpose therapies to help treat patients with life-threatening rare diseases.  You can read For Rare Disease Patients: A New Pathway To Hundreds of New Therapies, in Health Affairs to learn more about The Open Act and the hundreds of new treatments it could provide for patients like Kelsey.

I was lucky enough to hear from Nancy Goodman, leading pediatric cancer advocate, founder, and executive director of Kids v Cancer, at the DADA2 Conference this past November.  During her presentation, Ms. Goodman stated, “if there is a bill on Capitol Hill that will help your rare disease, then you should advocate for it!”

This is one of those times.  If you feel inclined, please help our cause and thousands of others like us.  You can click on this link to send a letter to your representative.  It only takes about two minutes to complete the form.

SAVE THE DATE – DESIGNER BAG BINGO- JULY 13, 2017

St. Charles Borromeo * 176 Stagecoach Rd, Sicklerville, NJ 08081

Motherhood

I’ll never forget the morning I learned I was pregnant.  Instinctively, I just knew.  I felt “different” and dizzy for at least a week.  The lines confirmed what my body knew to be true.  I also knew without a doubt that it was a boy.  

That moment will stay with me as one of the happiest moments of my life.  New life, excitement, and happiness.

Since that early morning excitement in July of 2008, I have watched friends and family members suffer loss.  I have seen that absolute excitement fade into depression and deep distress.  I have witnessed close friends struggle to conceive.  I thought of every one of those moments this Mother’s Day.

On Sunday, I walked alone into Shop Rite.  As I crossed the pedestrian walkway, the crossing guard wished me a Happy Mother’s Day.  Sans children at that moment, I thought about those losses, about those friends, about the women who would make incredible mothers but have not been given that gift yet.

The woman meant complete and sincere well wishes.  Was she a mother herself?  What if I was currently attempting to conceive and struggling?  I thought of those woman.  I prayed for those woman.  

Though it was just an act of kindness, it truly made me reflect on motherhood and all of its joys and challenges.  

I thought back to that moment when the positive lines surfaced.  The thrill of that moment and the knowledge that life was developing inside of me; it was pure excitement.  I can remember my own mother fearing every single day of my pregnancy straight through to my difficult delivery.  Knowing what I know now, I understand her concern and worry.

I realize that it is my opinion that the squeal of delight, genuine hug, or kind word from my child cannot be equally matched by anything else in the world.  However, that unmatched, genuine love comes with great responsibility.  The reality of motherhood is much less regal than I dreamed it would be.  It is often thankless, difficult, and tiring.

Most mothers I know would have it no other way.  I proudly stand among them and pray that the woman who wish to become mothers will soon know the pain and the glory that comes with the title.

To moms everywhere, thank you for being you.  To my mom, thank you for giving me strength and courage when I need it most.

Cleaning House

It’s funny how we hold onto things.  (Or maybe it’s just me?!)  I love clothes.  Sweaters, jackets, dresses, and shoes.  I love one more than the other.  I have a mix of memories from joy to tremendous pain when I look through my closet.  It is tough for me to get rid of the memories.

I recently cleaned out five bags of donated good that included the shirt I wore in 2004 when I met my husband (sad that I still own it, I know), the outfit I wore when I learned that I was first pregnant, and other various nostalgic gems.  I realized how much I hold on to happy moments and memories through material.

I also found the sweatpants I wore for the better part of a month while I was in the hospital with Kelsey in 2011.  I have not worn them again, and they were the easiest item to purge.  Yet, I wondered why I held on to them this long.  Clothes clearly connect me to moments.  I have never realized that before.

I closed my eyes and sent myself back to the memories and times as I placed the sentiments in the donation bag.

Some were easier than others.

It was not because I want to rid myself of those moments.  However, the past few years have opened my eyes to the ability we all have to do things we never dreamed possible.  I am trying to only keep clothes that focus on my strengths and represent the woman and mother that I strive to be.

Sometimes, I am asked how I do it “all.”  How I give that dreaded needle and then start my day with a smile?

Some days, I honestly do not know.  Some days, I fake it because it is easier.  Other days, I truly feel grateful for the injection because of the energy and strength it gives my girl.

I do my best to find strength within every morning, even though I often do so through shrieks and sobs.  I have learned to endure, take a breathe of fresh air while I walk my puppy, and attempt to find blessings every single day.  Those silver linings make the impossible much more manageable.

What I know is that we do what we need to do when we need to do it.  Sometimes there is no choice.  There is no how.  There just is.  I believe those moments define us.  Looking through a decade of clothing and accessories to see the woman I am in 2017, by choice and circumstance.

While my husband and I both wonder why I held on to the items, and he wishes that I donated them before we moved… the answer is unknown.  It was enjoyable to stop and look back through so many life-changing moments and materials.

The Good-Will happily accepted, and I felt cleansed.

Today, I choose to look forward with hope and much more space in my closet.  I hope to fill the shelves with more positive moments and happy memories instead of dwelling on those that I cannot control.

I’m Glad I’m Me

When April wraps up and celebrates poetry for a school poetry day, it warms your heart.
My children are lucky enough to have an amazing librarian who set up a program where students could select a poem and read it local businesses for a prize.  My two kiddos were thrilled at this prospect!  A lover of poetry myself, so was I.
Kelsey selected “I’m Glad I’m Me.”
I’m Glad I’m Me
By Jack Prelutsky
No one looks
The way I do.
I have noticed
That it’s true.
No one walks the way I walk.
No one talks the way I talk.
No one plays the way I play.
No one says the things I say.
I am special. I am me.
There’s no one else I’d rather be!
But in the end, her brother was given the task of reading this poem.  He read it confidently and everyone he read it aloud to shared a smile, an “Aww” or said what a brilliant poem it was.  Kelsey selected one about love that she made up to a familiar tune.  She proudly sang it aloud everywhere we went.
The following day, I woke up to see Kelsey carrying the poem I’m Glad I’m Me around with her everywhere she went.  She read it to family members, her dolls, and our puppy.
There’s no one else she’d rather be, and for that, I am glad.