#newviewforpan – Page 9 – Kelsey's Kaleidoscope

Wishing

Wishing Hoping. Running deep with prayer.

This photo was captured just before heading down to The National Institutes of Health for testing and follow-up visits. This prayer was not brief nor was it light. You could see it in her face and feel it once she was finished.

Perhaps like me she prayed for a status quo visit, perhaps like me she prayed for her doctors to make the best judgments and decisions regarding her health, or perhaps like me she prayed for strength while we visited the NIH facility.

The NIH is a truly remarkable place where miracles happen and lives are saved. The reality of the condition you have leading you there is the one you need strength to handle.

You look left, look right, and pray for strength. You pray for answers. You pray for a cure.

You chat with other patients and parents; you wonder how they are feeling. You see their stress and wonder if you are wearing yours. You smile meaningfully and listen carefully.

You see a concert, performed especially for the children, and inside you break down a little bit because you realize that each of those children is there with a special condition, disease, or affliction. You smile and clap, but tears stream between claps as you see your child being there among them. Praying for all of the beautiful children who gleefully danced, who are all in the same boat.

You leave with more questions than answers and hopefully sighs of relief. You know the doctors do all they can to help you and the condition that brings you there.

You can imagine your daughter’s wish at the fountain.

Your wish is the same.

Kelsey’s Kaleidoscope, Inc.’s wish is the same.

Anger or something like it

Anger. Sadness. Fear. Sometimes, it is difficult to sort through those emotions. Channeling our mind to a point where we can change our mindset to change the outcome can be easier said than done.

Lingering pain in all of us can feel like anger at times, though it is typically the shadow cast by other emotions and fears that triggers a sense of sadness.

A brave, strong, and confident woman I had the pleasure to meet addressed these feelings in her movement, The Jesse Lewis Choose Love movement. Her goal is to promote social-emotional learning around the world to help children (and all of us, really) chose love over fear and anger.

I thought of her beautiful message and mission tonight in the way that anger typically breeds something else under the surface. Is it fear? worry? confusion? frustration? disappointment? It is clear that we need to correct the underlying issue in order to choose love effectively.

Tonight I found a true struggle to find balance and deal with the underlying issue when I saw my child choose anger.

As I witnessed the pain inside my child, I could not help but feel a small bit of anger coupled with a large dose of disappointment. I was not disappointed for the emotions or feelings that surfaced, but rather that I was unable to help the child choose love and deal with the worry and frustration. I could not help channel it with positive energy. I felt lost and uncertain.

Anger emerged on a random Tuesday afternoon and lingered with a bit of rage. It is unsettling to know that a child is unable to conceptualize and deal with the emotions behind a rare disease and the effect it subtlety takes on a family daily, but forcefully overtakes on others.

Tonight was a defeat in an emotional strife. The battle is far from over.

We worked to draw, talk, and channel energy through physical activity to choose love and work through pain.

Our basic need to feel supported and loved can surface when we least expect them to and some nights it must be a conscious decision to choose love and lead your family with love.

The more we model our courage to choose love and work through our emotions, the stronger our future generations will be.

Tonight I lacked complete awareness on how to best do so, but I will never stop trying.

Choose Love.

Despacito Desconcertado, Embarrassed Slowly…

As a mother with two young children, I consider myself to have some wicked dance moves. Though that may only be true in my mind, I love to get out on the dance-floor regardless. It can be a release and gives me a sense of stress relief.

My son’s new favorite song is Despacito and I requested it for him at a family function this past weekend. I heard the opening notes and awaited his presence on the dance floor.

I was lost in the beat and Kelsey’s lyrics when I looked up to see him in a far corner, grooving to the rhythm and beat with his cousin.

I tried to get his attention. I tried to show off some of my moves. Nothing. He stayed in the corner and did not even look my way.

Part of the parental struggle is knowing which battles to pick. Though I could tell this was something more than met the eye, I waited to broach the subject until bedtime.

I slyly asked why he did not join me on the dance-floor for his favorite song. His answer at eight-years-old was honest and a sobering dose of reality.

“The truth is that it is too embarrassing to dance with my mom in public. I’m sorry. I will still dance with you at home. OK?”

“Did that just happen!?” I wondered in sheer and utter internal distress.

I thanked him for his honesty and sang him his lullaby.

Eight and embarrassed. A battle among many others, that I cannot fight.

The following night at bedtime, he asked if we could dance to Despacito together. Kelsey cued the music and I smiled.

I know he did that for me, and I’ll take it.

Why Me?

I was called in again to tame the fear of Mr. Needle and its lurking presence in the life of my daughter. It is never easy, yet it has become part of a routine in many ways unfortunately. As parents, we will do whatever we can to ease a bedtime woe.

Tonight’s conversation brought me to a full halt. I would be lying if I said I have not picked up on similar questions in the past or awaited this very one from Kelsey herself. Sometimes the reality of a situation is far different than we imagine it will be.

This one had my put on all of the mom courage I could muster to get through the discussion before running out to have a long cry myself. The reality of it all hit my like a ton of bricks.

Three simple words escaped my beautiful child’s mouth. Three words you do not wish to hear from your baby: “Why me mom?”

I have asked that question a great many times myself. Through sleepless nights, hospital stays, and countless tests. I have wondered. I have prayed for answers. I have prayed for strength to explain it to my child if she ever wanted to know. There it was.

I was silent and tried to remain strong and steady to truly answer the question in a way that she deserved to hear.

She continued in her wise little way, “I’ve been wanting to ask you this for a while, Mom. Why only me and not my brother. How did he get lucky and I did not?’”

I tried to use visible signals that she could understand. “You have blonde hair, he has brown, etc.” She seemed to get it. But to explain that deep inside, something so powerful, so life-altering, and so invisible was missing from her body that her brother was lucky enough to “get” and she was “not” was tough to say aloud.

I did start filling up a bit with tears as I explained, but I think that is ok. Our emotions make us human and as strong as I try to stay in her presence, she should know how deeply upset it makes me at times, too. She wiped my tear and told me not to feel upset by it. “You cannot change it. I know you would take it away if you could,” she said. Wise beyond her years.

But oh Kelsey, if you only knew how hard your family, your doctors, and your unknown friends around the world are trying to change it for you. Someday, I hope that you not only know, but you feel it when we figure out a way to cure you all.

Speaking of Friends and Wonderful People ~ Please SAVE THE DATE!

September 30, 2017 ~ Softball Tournament for A Cure! Pennypack Park on the Delaware

MORE DETAILS TO FOLLOW!

Entitlementality

This week, I was fortunate enough to attend a workshop entitled, Entitlementality. I must admit, I judged a workshop by its title. I was intrigued.

While I sat and listened to a discussion about the entitlement our society feels in 2017, I thought of all of the children growing up in this age of entitlement. A world where we have the ability to respond to a text message in the middle of a face-to-face conversation, answer a phone call during a workshop, meeting, or class session, and immediately feel gratification with food anywhere, anytime. Our technological addiction grows daily. I once again thought of the children.

I realized that we can model for them all of the good we want to see in the world. We just have to make a conscious effort to do it. We can be thankful and kind. We can make eye contact. We can be present more often. We can put down our phones and silence them!

One year ago, we began the conversation about Kelsey. I was scared to do so. Prior to the winter of 2011, I thought that I was entitled to a healthy child, a “normal” dose of parenting, and all of its wonders. My largest dose of perspective and loss of faith in everything I believed up to that point in my life came to a state of denial and fear of the unknown in 2011.

Years passed without an answer and I still felt entitled to that same dream for myself and my family. I held on to faith but stood in silence hoping that it would all pass.

Here we are in the real world.

We feel entitled to many things, and I still feel entitled to that right for my child. My family’s support and fearless efforts to expand our fundraising efforts, explore new technology, and find a cure for patients who suffer from PAN and dada2 is unwavering. We still fear the unknown, but we are also entitled to hope.

When you fail, you learn. When life knocks you down, you can lie there in denial or get back on your feet and change the course.

Thank you for helping me voice my fears, share my concerns, and address my hope for the desire I still feel entitled to have for my child.

To more research, more hope, and a cure…

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.”

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