courage – Kelsey's Kaleidoscope

Difficult Decisions

How do you explain the importance of protecting your immunocompromised child to the sibling of an immunocompromised child? This question is one we are not answering well in July 2020.

In March, April, and May when the quarantine restricted all of us, the discussions about what we were missing were easier than they are today. Now, we are all able to make decisions and choices to our own comfort level as Disneyland, amusement parks, and other public areas open with limitations and restrictions. We learned that a slice of pizza could have led to transmission over the weekend. We are scared.

As comfort levels adjust and invitations have come our family’s way, we find that difficult decisions and choices are ahead. These decisions are harder than we anticipated they would be. Multiple impending imaging studies and pathology appointments remind us of our why as a family unit. However, we are also trying to help an eleven-year-old understand. Receiving invitations to inside gatherings and parties should be exciting. Instead, we have to help him understand our fears and our need to protect the most vulnerable member of our family. Anger and sadness have followed. We understand and empathize, but that does not make it any easier for us or allow us to waiver from our choices.

We second guess our decisions over the past few weeks as a resurgence in cases appears around us. We fear the weeks ahead and what is to come. We pray that our fears are incorrect. However, we cannot take that chance.

Our hearts are heavy in mid-July for the difficult decisions that surround us as a family and the number of cases rising. Who would have thought that normalcy and its return would have been so difficult? We certainly did not see this coming. We bravely walk together and openly discuss our fears and family concerns to make the best decisions for us.

Be brave and make the best decisions for you. Stay healthy and mask up! If we all do our part, perhaps the road to return will not be as long or as difficult.

Kelsey’s Fight Song

Easter 2014 went from an Egg Hunt to the hospital. Kelsey and her mom drove to admit Kelsey because she could not walk. As Kelsey slept off some pain, her mom cried for the unknown. Then, a new artist shared her new song. @RachelPlatten shared the story of her fight and Kelsey’s mom went from sadness to hope. A powerful song can do just that…

A 2019 Thanksgiving family talent show had many displays of talent. Kelsey selected Fight Song and the words speak volumes. Though her voice was faint due to respiratory struggles and croup in the preceding days, the message is clear.

Storms we hope will pass

Each Tuesday night is unique. The worry is constant and fear, worry, and sometimes anger are typical discussion points for most of the evening.

Tuesday evening was no different this week. The marks all over the belly and the back were. After a nice walk around a park and calming conversation, we thought our bedtime ritual would contain the easing of fears and the notion of sweet dreams ahead.

Instead, photos were taken, prayers were issued, and we are once again reminded of the mixed emotions we know the morning will bring.

The thunder outside echoes our inner fury and angst.

We hope the rain relieves the heat and our morning medication subsides our worry for another day.

Wednesday on Saturday

Wednesday Addams… a classic television character was the recent choice of a party we were invited to with an Addams Family Theme.

Wednesday, “the dreaded day” seemed fitting in many ways for Kelsey. The mention of the weekday sends a jolt of fear and frustration to Kelsey each week. We were surprised that she decided to dress the part, but being Wednesday “the worst day of the week” on Saturday made her smile.

Kelsey said that this was the first and probably last Wednesday she would enjoy talking about.

Wednesday on Wednesday does not have the same sentiment, but at least she found a way to smile for Wednesday (on Saturday).

Balance

It can be difficult to slow down during the hustle and bustle of the holiday season. However, I find that is what we need right now more than ever.

We try to mix in holiday fun, quiet reflection, and a sense of gratitude for all that we do have in our lives every chance we have to do so.

At times the balancing act of work, play, and family can be a challenge for us all.

I think back to this week six years ago when I held a febrile child void of energy in my arms. She was nine months old and she was in need of serious medical attention. Docs convinved me it was teething. I was easily persuaded because I wanted to be. I wanted balance and I wanted to believe.

Standing in the doctor’s office demanding more, demanding testing, demanding results was not easy. It took bravery and perserverance.

The sixteen days we endured in the hospital following that moment were even harder.

Finding courage, finding strength, and finding balance in all things has taken effort then and now.

Kelsey’s disease helps us evaluate priorities, give thanks for blessings, and pray for balance in all facets of life. We pray for answers and we pray that we connect families and help others so that balance can be found.

I hope this holiday season helps you find comfort, balance, and love.

Courage when you least expect it

“Strength and growth come only through continuous effort and struggle.” -Napoleon Hill

Almost exactly one year ago, my mother convinced me that silence was not the answer. With the help and guidance of dear family members, Kelsey’s Kaleidoscope, Inc.:A New View for PAN was born.

Part of me feared the perception my family would receive after we revealed the rare disease in our home. Part of me feared that people would look at Kelsey differently because she has a rare disease. The funny thing is, if anything, people are more kind and generous than I ever could have dreamed.

Last week, the ten-year-old student who joined forces with his family collected $300 at his stand. He stood in a crowded room full of parents, families, and students who were there to understand the world of business: how to create a business model and successfully see it through. As I looked around the variety of business models and concepts, they were very similar in every single way.

Only one had a group of family members adorned in pink, a band of bubble-gum goodness. Selfless, sweet, and kind. Only one student that night showed the world that his family raised him to give back, expand his horizons, and fight for what he believes he has the power to change. He did not make a single penny for himself or his time, but he was beaming with pride from ear to ear.

That $300 is going towards a cause far greater he can likely imagine. We have had some exciting happenings over the past few weeks. Soon, we will embark on our mission to find the cure. Every single penny earned and piece of bubble gum sold will go towards finding that cure.

What started one year ago as a dream is turning into reality. If not for my mother supporting me and urging me to speak about the fight I was only living inside, we would not be on our way to finding a cure.

Today, the kindness, the generosity, and the selfless acts of others have helped us begin that mission. When a ten-year-old young man “gets” it, you can not help but get choked up inside.

Courage has the power to heal and change lives. A ten-year-old and his family showed me how much good there is in the world around us. Sometimes, we have to open our eyes a little bit wider to see it.

Reflections

Reflections in the cloudy bay water this weekend made me reflect on the journey I’ve traveled so far. My reflections are sometimes cloudy, too, but I think that is because I try not to focus on them. Instead I try to focus more clearly on the now, the positive, and the hope.

On my lap, joyous and exuberant sat a girl who sometimes sits on my lap the same way tired and in pain. When she is feeling great, the world can not help but join in on her contagious and positive spirit. She truly shines brighter than the sun.

When she sits on my lap, crying or sleeping due to pain in her legs, it is just the opposite. During those trying times, it is typically just the two of us as it was this weekend. Those lonely moments happen far less than they did years ago. Looking back, those nights were so frequent that they sadly became the norm. I think back to those days now and how they all began.

Like it was yesterday, I recall Friday November 18, 2011. My mom was off and watching my kids for the day. When I left that morning, my two children were happy and healthy, though Kels did feel a little warm to me. She had received her flu vaccine and nine month immunizations one week prior, so I did not think much of it. I left my mom happily singing with the kids on my family room rug. Neither one even noticed me leave.

I walked in the door after work to my mother in tears, Kelsey lethargic and red with warmth. My mother could barely speak. We locked eyes, both filled with pain, fear, and a stream of tears. I remember the words she spoke, the few she could get out, “Something is wrong.” I recall standing still and feeling frozen, fighting my own intuition because I just wanted everything to be right.

That night, my pediatrician assured me that Kelsey was just teething. “Advil will do the trick,” she said with a smile. I did not believe a word of it, but I attempted to sell the teething story to my mom. She did not believe it either. I wanted it to be true. However, when your child wakes with a 102.9 degree average temperature and red hot patches of skin on her body, you know in your heart that is not the case.

My mom’s words echoed in my mind almost every second of the day for the next week, “Something is wrong.” I was a naive mom, and I was in denial. I hoped that Advil would do the trick. I just wanted everything to be right. So a second visit to my pediatrician again suppressed my mommy instincts and assured me that it was just teething. “Advil will do the trick,” she said and I embraced the thought.

But I knew that it wouldn’t. What I did not know was how to say that I just knew that it was not just teething. After all, I do not have any medical training. I also did not have any idea what was actually starting to happen inside of my nine-month-old daughter’s body. Instead, I just remember crying to the doctor that night. It was the first time I cried about my daughter in front of a doctor. My heart just knew what I did not have the courage to say. That night, I knew that it was not just a feeling. I had to find the strength to say it.

“Something is wrong,” I pleaded. Somehow, I mumbled those three words through my tears, only to hear, “Advil will do the trick,” again. That was the first of many times I lied to myself. Instead of fighting for my child and advocating for what I knew was the truth, I fought back tears, attempted a smile, and gave my daughter more Advil. I did not have a medical degree. Yet, I still heard my mother’s words, “Something is wrong” and I knew that something was. I just had to decide what to do about it.

Reflections can be altered through a lack or burst of light. A cloudy day can turn sunny and picturesque in a moment’s notice. I wish I could alter those November reflections so quickly. Thinking about them helps me to see how far I have come, how much I have changed, and how much stronger I am because of them.

I much prefer the reflections of the cloudy bay water and the smile I saw reflecting back at me.

Reflections