The Weight of Wednesday

Funny how a day of the week once so arbitrary holds the weight of the world for us these days.  Last week, Wednesday brought relief through an injection.

So far, so good.  The dose did its job for now.  Labs were not great, but they did not signal any further alarms.  Observation and instincts guide us now.

This Wednesday, we wait to see if the dosage is right.  We wonder if it is enough.  We feel immense gratitude for the prayers and well wishes we have received over the past few days.  The worry and waiting have been a struggle, to say the very least.

If you read these posts, we thank you.  You are aware of the weight of Wednesday and the range of emotion it brings.  Sometimes the weight resembles fear or anger, other times it is a sense of gratitude or courage, and every now and again, it echoes strength.   Each Wednesday is also a time of reflection.  These words help release the strain and stress.  Each like, view, or comment reminds us that there is always a community to care for us and stand by us.

May the weight of your Wednesday be sparse today.  We catch our breathe today and hope our weight is light, too.

Strength

The brave words below are from a young woman with dada2 (Kelsey’s PAN is a manifestation of dada2).  She is an inspiration to me, and I am proud and honored to share her words with you.  Thank you, Anna Maria.

My name is Anna Maria. I’m 24 years old and in February, I had a bone marrow transplant.  I can say what I experienced and what I live by myself. In July 2017, I was told that I had to undergo bone marrow transplant therapy and that I would have no other solutions other than that.

I found myself facing two paths: one was to decide to continue in the disease which would soon bring me to death, or decide to fight for a living and then undergo the bone marrow transplant. If I am still here, it is because I have decided the second way. When I was told all this, I was very scared because it meant postponing my degree, university exams, enrollment in specialist university, the carefree age, the outings with friends, and many other things.

I cried a lot, then I told myself that without health and the transplant, I would have renounced all these things and much else, I would have renounced life itself. In short, I would have faced a few years, always spent in hospital to feel bad. While with the transplant, I would have made some sacrifices in this first year, but then I would have had a beautiful life and I would have enjoyed all the things I lost.

So with courage, I took this choice or the choice to live. I immediately understood that it was an important step in my life and I am very happy with this choice.  I will always keep it in my heart and I will be able to tell it to others. Of course now my path is not finished yet. I’m halfway, but I can tell you that I’m very well. I came to a point where the white blood cells were no longer produced because the lymphocytes had taken over.  I suffered from very strong vasculitic episodes. All these problems had invalidated my life, I was not really well.

Transplantation is the best weapon currently available to eliminate vasculitic episodes due to DADA2 and is strongly necessary, if not indispensable, to refurbish the immune system.  To give courage regarding the issue of hair loss: I obviously lost them too, but if I have to be honest, I find myself much more beautiful like that!

After about two months from chemotherapy, my hair is already growing back. We who face all this, the pain, the suffering, we are special, and we are brave.  This gives us a march more than the others. I can tell you that I’ve never been so happy in all my life.

Whatever It Takes

Picture a day of quality time in the happiest place on Earth.  You see smiling faces and a little bit of magic awaits you around every corner.

As grateful and happy as I was to spend time in this land of happiness, I could not escape a hint of sadness as my seven year old could not take it.  Sensory sensitivity is becoming apparent in various ways and there was certainly a great deal of that happening at every turn.

The standing, the walking, and the lines were just too much for her to take.

Though she looked the part in every way, her body told her it was on overload.  We found many magical things to do while waiting for her brother to ride and explore with sheer delight.  We took a much slower pace and took many breaks.  While we waited, Make a Wish kids and others who were also facing a challenge passed by us.  For those children and my own daughter, I struggled at times to face a cold, hard fact.  My child could not experience this trip like many other children her age do.

Her legs could not handle the walking and the weight of her on my back more times than expected was just a realization that careful considerations and thought must go into every thing for Kelsey; happy times included.

In the end, she found  a heroine in Star Wars’ Rey and there was one souvenir she just had to have.  Holding her father’s hand at a point when she felt strong and confident, she strolled with pride.

In this moment, I was happy.  She is a warrior and for her, I will do:

“Whatever it takes
You take me to the top, I’m ready for
Whatever it takes,” Imagine Dragons, Whatever It Takes

Whatever It Takes. For you.  Always.

My Heart is on the Mat

I once saw a shirt that stated My Heart is on the Mat.

To any mother who has watched three periods of sweat, endurance, and passion in their wrestler’s eyes, you know exactly what that shirt means.

Win or lose, the young men and women shake hands, give it their all, and often times leave the mat with raw emotion on their faces.  It is a mental battle and a sport that creates mental toughness.  

Mental toughness can be difficult to achieve.  Few activities create or work on mental toughness in 2018.  Wrestling, however, is all about the heart and soul of small failures leading to great victories and tough losses that challenge the competitor to work harder.  Stamina, sportsmanship, and pride are developed and fostered with every passing week.

Though my typically weekly thoughts express my worry and serve as attempt to gain clarity, share hope, educate, and raise awareness, today my gratitude is for a sport that helps my family focus and my son escape.  It is the sport that gives my son an outlet for all that I know he cannot understand in this world and all that he questions about what he sees. 

On the mat, it is him against the world.  He stands there strong and tall, ready for battle.  

It is a time for him to shine, focus, and I watch as he places his heart on the mat, minute after minute, period after period.  Win or lose, there is always something gained.

To all the mothers who watch their sons on the mat, I support you, and I understand you.

My son does not always win, though I kiss him and tell him how proud of him I am each time he gets out there.  I am so proud of his progress, his intensity, and his effort.  The truth is that no matter what the score at the end of the match, he has gained a new skill, level of confidence, or insight on a skill or position to work on in the future.  Each match helps him to grow and better himself as a person and as an athlete.

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

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.

Finding Solace Together

The perfect storm of few positive changes, new marks, less sanity, more daily or double injections, little sleep, and an uncertainty of when those medications will end has not been easy on my marriage.

Sometimes, I want to be calm when I cannot.  Other times, I want to cry when I cannot find tears.  I often hide behind a book or try to sleep because I am out of energy and out of words.  We both do this at times even though we try our best to stand together.  Sometimes it is exhausting.

We try our best to communicate naturally and normally.  Most days, it happens with ease.

Other days are not so good.  We both find our own ways to cope and sometimes it is not in unison.

For a few weeks, it felt like we were more out of sync than ever.  It was troublesome and created new stress for us.  I’m sure many who have been married for a long period of time have had similar glitches over other reasons.  Not us.  Brendan and I have always found a way to be in sync.  Our secret has been to somehow be exactly what the other needed at precisely the right time.  So this was scary and strange, uncharted territory that I did not want to travel.  We were our sadness instead of our solace.

Sometimes, finding time to say the words that are difficult to speak is all you need.

This weekend, we were given the gift of laughter and time together to celebrate Brendan’s birthday.  Though the weather was fiercely cold, our puppy grew ill, and our restaurant choice turned out to be a comedy of errors, it was precisely what we needed.

I realize that every day moments are full of surprises for everyone.  No one ever said marriage was easy.

Happily, this week, I celebrated the happiness and health of my husband who grew another year more handsome and wise.  I fondly sat beside him and we laughed like we have not laughed in a long time.

It was just what I needed, and I thank the village that helped us manage to sneak away.  We remembered to take time to love one another and laugh together, in unison.  I am grateful for the patience and the strength of our marriage and all that it helps me accomplish day in and day out.


Join us for a St. Paddy’s Day Happy Hour on Friday, March 17 from 5-9 P.M. at Phily Sports Bar.   The night will feature games, contests, and fun.  Win some liquor, share a toast, and help us raise money for our cause.  $35.00 will get you an open bar from 6-8, food, and festivities. 

 

The Art of Kite Flying

Saturday was unseasonably warm.  The sun was shining and kids were outside gleefully playing.  The kids rode their bikes, enjoyed a soccer game, and even played a few rounds of the classic, hide-and-go seek.  It was glorious.

Smiles were wide and we all shook off some winter blues.  The timing could not have been better.

After a while, Kelsey emerged with an unopened kite box.  She was on a mission to fly her kite.  Step one, open the layers of tape and packaging to locate the kite and its many components.  A multi-color butterfly appeared before our eyes at completion.  Kels was overjoyed.  The only problem I saw was a lack of wind…

Kelsey saw no problem at all..

She eagerly and patiently helped me affix the thread and metal springs.  It seemed that she found joy in every step of the process and squealed with delight as the flat material transformed into majestic butterfly.  

Truth be told, Kelsey’s daily injections have been tough to endure this week.  We are all ready to find a new routine.  Though we trudge through the motions because of their importance, we feel a little defeated by 7 A.M., too.

Thus, the return of the sunshine and warmth did us all a world of good.

We still had to fly our kite.  And when Kelsey is on a mission, there is no stopping her.  Persistence could truly be her middle name.  The child will not quit.

Every new attempt to fly made her focus even more on her goal.  She lengthened the rope, held it tightly, tried, and tried again.

Her determination inspires me.  Her strong will found a way and though it was only a few yards of successful flight, her joy was infinite.

Saturday, I thank you for the breathe of fresh air that I desperately needed.


Looking for a fun and festive St. Paddy’s Day event?  Join us for a St. Paddy’s Day Happy Hour on Friday, March 17 from 5-8 P.M. at Philly Sports Bar for games, drink specials, and fun.  Win some liquor, share a toast, and help us raise money for our cause.  Save the date.  More information will be posted in the coming days.

Six and Full of Sunshine – Happy Birthday

Six years ago, I awoke full of joy and excitement over the soon-to-be arrival of my baby girl.  2011 was the best January of my life.  Hope sprung eternal, snow piled high, and a true gift to our family was born.  

Kelsey’s sweet face was alert and full of wonder.  Her tiny hands clutched our fingers.  Her brother stared at her with curiosity and awe (maybe a tinge of jealousy, too).

We brought Kelsey home to a nursery of brown and pink flowers, infused with butterflies and symbols of love.  Her name was rhythmic and powerful.  She was strong from the start.  It seemed that she was everything I had hoped for in a baby girl.

Some how, some way, Brendan and I were unlucky enough to pass along a condition that depletes us at times.  We cannot help but remove our rose-colored glasses and face the facts.  The truth is, Kelsey makes it easy to wear those glasses most days.  If you look at the world through her eyes, it is a place filled with wonder, beauty, and kindness.

Every morning, there is a true glimmer of hope that wakes up seemingly full of more sunshine and happiness than when I kissed her goodnight.  Her name is Kelsey and though her six-year journey has been arduous, grueling, and a daily struggle, she makes it easy to forget the health woes and worries.  One ecstatic smile can easily replace the worry.  You just feel better being near her.

When you speak to Kelsey, you can lose sight of how young she is because of the depth of her understanding.  The complexity of her vocabulary astounds you, and you remind yourself that her life experiences have given her a perspective that most others simply do not have.  She is always looking on the bright side.  Sometimes I actually find myself lost in a smile and she will ask me why I am feeling so happy.  My answer is simple, “It is because somehow, you are mine.”

Every day I am so grateful that she is mine.  Heartache and insurmountable worry aside, she is the “sunshine in my pocket.”

She involves other children in play, never wants to leave a friend out, and always thinks of others.  Sometimes, our dinner conversations are more about how she can help a classmate (with something the person likely does not wish to be helped with…) more than they are about herself.  She is just remarkable.  Even her choice for plate color and peanut-free treats for school were all about the other kids.  She wanted yellow and pink so the boys and the girls would be happy.  Then, she picked out DEEP BLUE plates.  The girl who loves pink and purple chose dark blue.  I had to ask for a rationale.  “Mom, the boys will not want to eat off of a pink plate.”  That is Kelsey.  I bought pink plates anyway.

I bought you those plates because today is your day baby girl.  Bring in those PINK plates and have your PINK cookie with a huge smile.  Soak in the songs and smile as only you can.  

Today, my wish for you is a year that does not try to break your spirit like the last few months of five did.  You did not let it, and I will make it my goal to let your positive spirit guide mine today.  There is nothing sweeter than watching you smile.  You are jumping for joy today.  

Happy sixth birthday!  You are my girl, my sunshine, and my strength.   Stay strong, compassionate, and positive.  May your every wish come true.