Month: May 2017

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.