strength

Kindness for a Cure

Random Acts of Kindness followed a week dedicated to spreading cheer and joy at Kelsey’s School. Then we were humbled with gratitude and our community’s support for Kindness for a Cure. Kelsey lives in a community where she and another student suffer from a rare disease. This year, one dedicated secretary (with the support of all around her) committed to supporting our local non-profit organizations for a school-wide fundraiser. Wow. The letter that went home is below:

One School’s Kindness for a Cure

February 10, 2020

Dear Parents/Guardians,

In coordination with the Great Kindness Challenge, students, staff, and families raise funds for special causes each year. This year, our school will raise funds and awareness for two rare conditions that affect two very special students in our district. We will donate all the funds collected to the Shwachman Diamond Syndrome Foundation and Kelsey’s Kaleidoscope, Inc. Each organization will receive 50% of the funds.

To learn more, click on the links below:

Kelsey’s Kaleidoscope, Inc.

Shwachman Diamond Syndrome Foundation

Many of you may not be aware of these conditions and how they impact two local families, so we wanted to bring more awareness and attention to the rare conditions affecting Kelsey, a third-grade student, and Maggie, a fourth-grade student in our district.

We ask that families who want to donate coins, have their child bring them in a disposable container or baggie. Anyone who wants to donate via check, can do so by sending in a check written to either organization listed above. Donations can also be made online using the links above.

Our School is proud of the awareness we bring to our families and hope this fundraising effort can assist in bringing more attention and a possible cure to Kelsey, Maggie and all of those affected by these illnesses.

Thank you! (All!)

We are blessed and grateful for this initiative of kindness.

Nine Lessons in Nine Years

Kelsey soon celebrates nine years of life. Each of her nine years has been unique. She has endured so many inquiries, tests, and circumstances, many of them we as adults may not have experienced. To put it another way, it has been a journey. Each year of the journey has taught us something new. We are grateful for each year and the lessons we learned.

Year One taught us resilience. We spent 16 days hospitalized and torn apart as a family, each in pain with worry, concern, and lacking a diagnosis. By the first birthday celebration, we bounced back ready to learn more and find an answer. Each one of us was forever changed by the experiences that we can never fully explain.

Year Two taught us to advocate. In year one, we listened to poor medical advice and waited on others to seek solutions. Year one was painful. Year Two was the year of advocating. Remember to be your own advocate and advocate for your children’s needs, always. No one will ever care as much as you. We did not accept, “she is fine!” and we sought answers instead of waiting for them to come to us.

Year Three taught us to listen. Year Three gave us a diagnosis. We thought that would make life easier, but instead, it led us to more questions and further complexities. Medication battles with insurance and a true inability to process how little we knew made us listen more and savor small moments. Upon one biopsy that resulted in a huge incision on the neckline, the surgeon soothed a mother’s worry about the scar to say, “We have to make sure she sees her next birthday. This scar will help us figure out how to get her there.” Listen. Trust. Breathe. That was Year Three.

Year Four taught us promise. There was so much promise in the medication we were using and so much happiness and joy brought back to our life when the medication started to work for our child. A child who was once lifeless and listless was running and climbing stairs. Promise and joy were restored in many of Year Four’s moments.

Year Five taught us Vulnerability. We began this journey with Kelsey’s Kaleidoscope and we started to tell our story. We put ourselves out there and started to spread awareness and raise money for our foundation. We connected with others who shared our story. We were weak when Kelsey took a tough turn and faced the return of frequent hospital visits and scans. We had a fridge full of medication that no longer eased pain or brought joy. We were vulnerable and scared.

Year Six taught us patience. We trusted and prayed and after eight months of changes, a calm came for Kelsey. She was walking, running, and smiling with ease. We were patient and we were grateful.

Year Seven taught us endurance. The road had been long and pain Kelsey started to feel emotionally and physically transferred to each member of her family in some way. We laughed, we cried, and we got each other through. It was not without a long road and another failed medication. Spots, weakness, and pain returned to bruise emotions and bodies.

Year Eight taught us hope. We were beyond touched by the community efforts and new faces that learned of our journey and cared. We published a book, we went on television, and we reflected on where we are at this time. We have hope and gratitude.

Year Nine is unknown and undefied. Together, we are ready to persevere and lift each other. We plan ahead and dream big. We thank you for your support and kindness. We wish Kelsey a happy ninth birthday and pray for all of her wishes to come true.

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.

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.