Uncategorized – Page 25 – Kelsey's Kaleidoscope

The Warrior

She does whatever she seeks.

She achieves whatever she sets her mind out to do.

She is strong, powerful, and fierce.

Soft on the outside but tough as nails inside.

She perseveres.

She endures.

She is kind.

Wise beyond her years, she stands tall and proud.

As she and I stood still in Warrior Two pose, I smiled as I watched my strong, fierce warrior whose strong exterior fools the world with the inner pain and angst she faces.

But the joke was on me as we completed our workout and she said, “Mom, you remind me of the warrior because you are strong and always reach your goals. I’m so proud of you.”

I guess the apple doesn’t fall far. I was left speechless.

To my warrior and greatest goal yet to be reached, we pray, hope, and continue to research a way to cure your warrior body’s inner battle.

The Merry Go Round of Life

The lights, the sound, the motion.

Nothing quite like a merry go round to make you feel nostalgic and carefree.

While feeling like a kid on a carousel, an ear shattering shriek was heard.

The ride stopped.

Panic (unnecessary, but truthfully) sunk in.

“What was that??” everyone peered and looked around.

The operator smiled on her microphone, remained calm, and said that all was well. It should only be a few minutes before it was up and running again.

In those few minutes, I watched two technicians come around to correct the problem and could not help but realize how parallel the experience was to life.

The ride starts full of smiles and sunshine.

The pause and ponder happens.

The worry, the fear, the panic.

You hope the voice of calm appears to ease your mind and support the endeavor.

The support comes in to identify the problem.

Hopefully, a solution can be found and corrected.

If so, the merry go round keeps spinning.

The smiles resume.

Sometimes they appear with uncertainty because the ride may just stop again.

When it’s over, you realize that good or bad, you have to get off and keep on going.

We thank the Almoras for joining us on the Merry Go Round and supporting our cause as we spin in hopes of finding a cure.

Zen

The past few weeks have presented several challenges to us. Some have been emotional and some physical. With each new roadblock, we try to learn and grow as a family.

Spending quality time with my son can be a challenge with basic activities, interests, etc. Throw in a few other changes and balance can be hard to find. It is something I make a conscious effort to do, but it is also a personal goal of mine to do better in this area. Life can stretch us all too thin at times.

By request, my son and I recently went on a date. He beamed from ear to ear for the duration. He calculated our scores carefully during Dinosaur mini golf, hugged me between each of the 18 holes, and picked the coziest corner available for our ice cream treat. He put his arm around me and talked far more than usual. He made me feel special, and I hope to always do the same for him.

While we were enjoying our sweet, he said that it was the day of zen. I marveled at his vocabulary until I realized he combined our names and it was literally the day of “Zen” to him. He was so proud to make up that clever little nickname for us.

My sweetheart.

Today, my heart was full of this new “Zen” as I watched my baby boy, the one who is too cool to dance with me and prefers play over talking, need me.

My mind went in many directions as something routine forced me to celebrate my family and our blessings.

I had more snuggles than ever and was even unable to leave his room without him stopping me to say, “Mom, I need you.”

Maybe it is just me, but those three words were all I needed to hear.

Zen, I need you, too.

Smoking is Bad

“Smoking is bad. There is no question about that, Mom.”

“Absolutely,” I thankfully stated.

“Mom, I’m so disappointed by the people I see smoking. Don’t they know how bad it is?” she replied.

“Well that’s a complicated question, Kels. Not everyone knew the risks and concerns when they started. Many would like to quit but have a tough time with it,” I respond with far too much detail.

“Oh, ok. What would happen if you smoked with a baby in your belly?” she fired back with quickly.

“Well smoking could hurt a baby and cause problems,” I answered.

She sat in the back seat pouting. I wondered if she and a friend were discussing this and exactly what would come out of her mind next.

“Oh. I see,” she finally stated.

“Everything ok Kels?” I wondered.

“Yes. It’s fine, mom. I didn’t know that you smoked while you were pregnant with me, but I guess it explains the bad stuff inside of me. It’s ok,” she forgave me.

“Kelsey, Mommy did not smoke with you inside of her belly,” I reply and you know the tears stream behind my sunglasses because I knew that the next question was about to be asked.

“So what made the bad things happen inside of my body?” she asked.

When words of wisdom fall short, and life is harder to explain than seems reasonable… you try your best.

“Kelsey, it is a bit complicated. Something inside of your body is missing, but Kelsey’s Kaleidoscope, Inc. and the dada2 foundation are working to find a way to replace it,” I said full of anger, sadness, and hope intertwined.

“Of course, Mom. That’s fine. I forgive you,” said my sweetheart.

A few minutes later, she continued with one final thought.

“The sooner you can get that replacement for me, the better. OK?”

“Ok baby girl. Ok.”

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 .