August 2017 – Kelsey's Kaleidoscope

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.