#newviewforpan – Page 6 – Kelsey's Kaleidoscope

Toothpaste Suspicions Prove True

Toothpaste suspicions were accurate. Something inside was brewing. My son and I knew it through out unspoken bond.

The irony is that we had a well visit scheduled for that evening. I was happy to have a set of professional eyes on Kelsey to assure all was well. All seemed well so my fears were squelched.

That was until 2:00 AM when a child awoke agonizing in pain. It was her ear. It went on until 6:00 AM when I could provide another dose of a medicine that I hoped would do the trick. My choice in the middle of the night did anything but the trick and the pain just grew at a steady pace.

In those moments, though an ear infection seems to have developed over night, the mind still drifts. The worry increases as do the screams of pain. You hope the morning will bring her relief. You hope your family will have a sense of relief, too.

It was only an ear infection, thankfully. Four days later, the pain finally dissipated. A few days of medication left, you hope that will be the end.

Toothpaste

When rain turns to snow and your husband leaves an hour earlier than usual for work, the day starts off interestingly.

The dog wants no parts of a walk nor do you have an umbrella handy. You want to make the best of the morning.

You sing a few of your favorite songs with your kids over breakfast and you talk about what fun awaits them today.

You worry about a cough Kelsey has developed. You do not like the way her eyes look. You don’t want to say aloud the worry you have every day, but feel acutely today.

You all head upstairs to brush your teeth when fighting ensues in the bathroom. They are concerned about toothpaste. They are mad about the duration of each other’s brushing.

When you question your son about the rationale for being upset, he says it is because Kelsey is not brushing her teeth long enough. I always tell the kids how important dental health is to overall health, and we have been working very hard to help Kelsey care for her teeth independently.

Perhaps it is more than that, though, and perhaps that acute worry of yours is coming off in a way you cannot realize.

You hug your son and thank him for his concern. You hug your daughter and pray the day goes well.

You hope the weight of the worry will not stick like the snow causing uncertain travels on the roads ahead.

Venom

Field trips are a time for fun and discovery in elementary school. Kelsey went on her field trip today and her father was able to accompany her. He was proud to share the day with her.

Throughout the day, I received pictures and updates of the excitement. They had a wonderful time.

One memory from the day stuck out regarding inquiry and discovery.

The curiosity of snake venom led to a discussion with a museum employee. The knowledgeable exhibitor shared the common and less known uses of snake venom. It has led to scientific breakthroughs and enhances medication.

Kelsey looked inquisitively at her father after hearing these words and said, “Dad, snake venom helps make medicine. Did you hear that?”

“Yes. Very cool,” he replied.

“Snakes might help me with my disease someday? What do you think?”

A girl can dream…

Snakes… though I know little about them, I hope we can do better than venom.

Designer Bag Bingo ~ April 5, 2018

St. Charles Borromeo Church Hall * 175 Stagecoach Rd.* Sicklerville, NJ 08081

7:00 PM (Doors open at 6:00 PM)

$30 for 10 games, Raffle for baskets

Translation

With much happening and yet nothing all at once, I smile and log on to Facebook.

I am sad to read about another diagnosis across the ocean in Italy, but I am in awe that her words in Italian were translated for me in English. Unfortunately, the disease keeps spreading as does its global awareness. Language and cultures are neither a barrier nor a shield.

Our medical advisement can vary state to state, region to region, and continent to continent. However, our mission remains the same.

We are lucky to connect with one another patient on a global scale, but our message should remain consistent and clear.

Tonight, I will sleep well knowing that more cases and more children are being evaluated, treated, and diagnosed.

Now… we continue to search for more wisdom and effective solutions to assure a better tomorrow for us all. Italian, French, English, American, and everywhere in between, we are hear and we are working hard.

Translation = Gratitude

Save the Date!

April 5, 2018

Designer Bag Bingo

If you bring your daughter…

If you bring your daughter to your office,

you will feel guilty.

You will want to make it up to her,

though she will happily explore the space.

If you bring your daughter to your office,

you will smile the next morning

when you read when she left for you to see.

If you bring your daughter to your office,

you will feel grateful that you did.

You will marvel at her thoughts.

You will savor the sweetness.

You will feel gratitude.

Spread kindness. Spread happiness. Spread love.

My Valentine

Though my girl steals my heart on a daily basis, I must admit that my son stole my heart on the day he was born.

He is serious. Though he is more reserved with his feelings than I, he quietly displays kindness, care, and thoughtfulness when you least expect it. His emotional caution makes me question my parental choices, and I always try to figure out what that handsome face is thinking.

He recently logged into his school account to submit an assignment. Though the task he logged in to create and submit was incredible, my heart broke a bit reading through his writing.

He always makes me proud, and I hope I tell him that enough. However, reading his free choice writing made me feel disappointed for my son and what he quietly endures. The two times he was asked to select a free choice narrative this year, he wrote about his sister and her disease. Of all of the topics and all of his options, he chose her.

His first writing was about the remarkable softball tournament the Britto Agency hosted in September. He wrote about all of the people who attended, the low skill set of our team, and the money we raised for Kelsey’s Kaleidoscope, Inc. He wrote about having fun.

In the second task, he described the day his sister was born. He wondered if he would ever be special again when he saw the attention she received. He discussed his sister’s disease, her hospital stays, and how the entire process is difficult for him at times. He assured me he feels special and that was just how he felt back then, and I will work harder every day ahead to assure that is the truth.

He is my heart, he is special, and today he is my Valentine.

Worth a Thousand Words

The artist in Kelsey cannot be contained. She loves to write and draw before she falls asleep, and I typically enjoy reading her words and seeing where her mind drifts before she falls asleep. I came across these and felt that her words and thoughts spoke volumes.

7 Years

Seven years ago, a beautiful girl was born named Kelsey. She came into the world with grace and her umbilical cord wrapped around her neck. “We will consider it her first necklace,” laughed the doctor as her Apgar test showed health on all levels.

The course of her first 3.5 years is almost indescribable when we look back. We had constant signs and indicators of worry and trouble. We had surgeries, hospital visits, biopsies, rashes, and red marks. We had so much hope that “this would just go away,” though we knew in our hearts that 3.5 years of worry were not going to simply do so.

Almost 3.5 years to the day, on a June evening at 5:22PM, our world changed forever. Our 3.5 year old was diagnosed with Polyarteritis Nodosa and everything we knew has been more difficult since we left the hospital that night.

Understanding what a rare disease does to a person and her family is something you cannot understand without enduring it firsthand. It gives you perspective, it creates constant doubt, but it also helps you feel tremendous hope for what you learn and discover (depending on the day).

The second half of Kelsey’s 3.5 years have been equally trying. “At least we know what it is,” we sometimes say, because we now know what we are worrying about. Sometimes, that only makes it worse.

When Kelsey blows out her seven candles, we will be filled with hope and wonder. She is a child that lights up the world with grace, beauty, wisdom, and energy. Her love of life cannot and should not be contained. Keeping her body strong, filling her brain with more wisdom, modelling character virtues, and choosing love in the face of the rare illness we first learned about 3.5 years ago is the journey we travel every day.

Seven years and so much of a story to tell.

Happy birthday to a girl that has taught us so much and continues to sparkle and shine in so many ways.

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.

Doctor In Training

When you have a child with a rare illness, specialists are kind and curious. Pediatricians are cautious. Those who know hug a little tighter and they mean it.

When Kelsey was in isolation and quarantine, a yellow stethoscope was left behind as doctors had to utilize this specific tool each time they came in to check her and assess her progress. She took it home in December of 2011 from the isolated room as a “souvenir” of sorts.

I have considered getting rid of it as it reminds me of a difficult time in our journey and there are also days that I look at it more as a yellow badge of courage for my brave girl.

This weekend, she checked us all out with the souvenir and made us call her “Doc” while doing so. It was joyful.

She wore the tool with pride and assumed the role of a doctor with grace.

During my check up, she spoke about her future. As I remain hopeful, I also fear the future and the unknown. When your six year old tells you that one day soon, she will consider being a doctor, the future looks brighter.

You smile and ask her why.

She responds, “Well that way, one day I can help find a cure while I’m at work. Then, I’ll take some home and give a little bit of it to myself.”

While I pray and hope that we work to assure that a cure is found before her white coat ceremony is possible, the sentiment sure made me smile.

To dreamers and believers everywhere, I hope your future looks bright this morning.