Nine Lessons in Nine Years

Kelsey soon celebrates nine years of life.  Each of her nine years has been unique.  She has endured so many inquiries, tests, and circumstances, many of them we as adults may not have experienced.  To put it another way, it has been a journey.   Each year of the journey has taught us something new.  We are grateful for each year and the lessons we learned.

Year One taught us resilience.  We spent 16 days hospitalized and torn apart as a family, each in pain with worry, concern, and lacking a diagnosis.  By the first birthday celebration, we bounced back ready to learn more and find an answer.  Each one of us was forever changed by the experiences that we can never fully explain.

Year Two taught us to advocate.  In year one, we listened to poor medical advice and waited on others to seek solutions.  Year one was painful.  Year Two was the year of advocating.  Remember to be your own advocate and advocate for your children’s needs, always.  No one will ever care as much as you.  We did not accept, “she is fine!” and we sought answers instead of waiting for them to come to us.

Year Three taught us to listen.  Year Three gave us a diagnosis.  We thought that would make life easier, but instead, it led us to more questions and further complexities.  Medication battles with insurance and a true inability to process how little we knew made us listen more and savor small moments.  Upon one biopsy that resulted in a huge incision on the neckline, the surgeon soothed a mother’s worry about the scar to say, “We have to make sure she sees her next birthday.  This scar will help us figure out how to get her there.”  Listen.  Trust.  Breathe.  That was Year Three.

Year Four taught us promise.  There was so much promise in the medication we were using and so much happiness and joy brought back to our life when the medication started to work for our child.  A child who was once lifeless and listless was running and climbing stairs.  Promise and joy were restored in many of Year Four’s moments.

Year Five taught us Vulnerability.  We began this journey with Kelsey’s Kaleidoscope and we started to tell our story.  We put ourselves out there and started to spread awareness and raise money for our foundation.  We connected with others who shared our story.  We were weak when Kelsey took a tough turn and faced the return of frequent hospital visits and scans.  We had a fridge full of medication that no longer eased pain or brought joy.  We were vulnerable and scared.

Year Six taught us patience.  We trusted and prayed and after eight months of changes, a calm came for Kelsey.  She was walking, running, and smiling with ease.  We were patient and we were grateful.

Year Seven taught us endurance.  The road had been long and pain Kelsey started to feel emotionally and physically transferred to each member of her family in some way.  We laughed, we cried, and we got each other through.  It was not without a long road and another failed medication.  Spots, weakness, and pain returned to bruise emotions and bodies.

Year Eight taught us hope.  We were beyond touched by the community efforts and new faces that learned of our journey and cared.  We published a book, we went on television, and we reflected on where we are at this time.  We have hope and gratitude.

Year Nine is unknown and undefied.  Together, we are ready to persevere and lift each other.  We plan ahead and dream big.  We thank you for your support and kindness.  We wish Kelsey a happy ninth birthday and pray for all of her wishes to come true.

Brave Day – THANK YOU!

Samuel Mickle Elementary School holds Brave Day for student with rare diseaseSamuel Mickle Elementary school holds Brave Day for student with rare disease

This is how we braved:

Click here to read NJ.com’s story on Brave Day in support of Kelsey!

Thank you for your love and support!

Perseverance

Today’s words come from a community that values character and recognized Kelsey for displaying perseverance.  Her teacher’s touching words speak volumes.  Below are the words that were shared about Kelsey and her exemplary character.

“Perseverance (noun), continued effort to do or achieve something despite difficulties, failure, or opposition. When asked what perseverance meant to Kelsey, she stated, “When you try and try even though it doesn’t go your way!” I couldn’t agree more. Kelsey is a perfect example of a student who demonstrates perseverance inside and outside of the classroom.

As she enters the classroom each day with a smile as bright as the sun, and a readiness to learn, you’d never know, but Kelsey fights a rare autoimmune disease called PAN.  PAN is a rare a potentially fatal disease that affects small and medium arteries causing injury to organs and unfortunately, does not have a cure at this time.

Despite difficult days, physically, mentally, and emotionally, Kelsey never gives up. When a challenge arises in the classroom, Kelsey faces it with confidence, patience, persistence, perseverance, and determination.

She is a thoughtful friend and wonderful role model for her peers. She goes out of her way to encourage others, and shows outstanding leadership skills in the classroom.

Kelsey is always willing to lend a helping hand.  Kelsey, I cannot think of someone who could be more deserving of this award than you.  You’re too positive to be doubtful, too optimistic to be fearful, and too determined to be defeated. You are one of the most courageous young ladies I’ve ever met. Never give up!  It is my honor to nominate you, Kelsey, for the trait of perseverance.”

Dream Big

This week, our well visit led to Kelsey conversing with our doctor about how she hopes to be a professional basketball player and a doctor when she grows up.  We always encourage our daughter to dream big and hope she always aspires to do so.

Anyone who couples a headband tiara with a dry fit basketball tee deserves to follow her dreams.  Right?!

We smile and laugh as we dream of the future for our children, with our children.

Then we reflect on recent news and feel it hard to process reality sometimes for those challenged by Kelsey’s disease.  We learned about another patient whose marrow transplant donor backed out.  We are hit hard with that reality. We pray for that family and hold on tight to our hope for our daughter and all the other children we know who suffer.

Another family reached out to ask us about their challenges to discuss treatment options. We try to stick together because learning from others gives us strength and comfort. We pray for our friends near and far and wish them well in their treatment plans as limited options exist right now.

We send positive vibes to anyone who struggles to dream big today, and we continue to hope that someday all of our children’s dreams will come true.

Eight, Please be Great

In a few short days, we turn the page on another year and hope for a great year of eight.

Seven has been challenging, to say the very least.  Though we have been showered with love and support, questions remain unanswered, therapy options are still in conversation, and the unknown overwhelms us at times.

We look behind to another year of lesions, biopsy scars, and pain.

We look behind for joyful moments and laughter that have kept us whole.

We look today into the eyes of a child full of joy, uncertainty, and love for all she does.

We look ahead craving hope and answered prayers.

May eight be as great as she wishes…

May all of her dreams come true…

Birthday Wishes

Family is truly the epicenter of this foundation.  Without the love, support, and generosity of our families, we would not be the organization we are today.

The love we feel from our family also lifts us up.  We have met new families on our family support group site and pray for the families around the world afflicted with PAN and dada2.  It is not always easy to digest the reality of this disease and the daily strife it causes for families.

Last week, we tapped into social media with another feeling; hope.  We know that we are not alone in the rare disease community and we try to lift each other up as a result.  Sometimes, when things get dark, you need to find strength in those around you.

A dear family member has been struggling with her own battle and for her birthday this year, she wanted to do something special for Kelsey’s Kaleidoscope, Inc.  Inspiration can come when you least expect it.  Though she already reached her goal, I invite you to view her fundraiser and want to thank her for spreading awareness and raising funding for our fight.

Love.  Hope.  Gratitude.

May your birthday wishes come true, Jessica.

Click on the link to see the cause or donate!

Mothers

Typically in the moments after giving my child a needle of life-saving medication, I dash upstairs both to run away from the nauseous feeling in the the pit of my stomach and to block out the shrieks of pain caused by my injection.  I usually put on my jewelry for the day and take a moment to breathe.  It’s our routine, and we all try our best to make it “ok.”

When Kelsey chose me to inject the medication, I did not think I could handle it.  Though we were both trained, my husband started the process first and seemed so much more competent and strong than I thought I could be as he injected.  I was the comfort and that role suited me fine.

Today’s injection was a particularly tough one.  In truth, perhaps they all are, but I often run away instead of having a moment to reflect on it.  As I sit to find strength in the joy of laughter now surrounding me, Kelsey comes over to me.

She sees my face and touches my cheeks with her hands.  She says, “Mom don’t be sad that you hurt me.  You did hurt me today, but I know you love me and that’s why.  You just want me to feel better.  Ok?  It’s OK Mom.”

OK?  Is it?  The truth is, it is not really OK.  It is not really OK because my child’s presence to offer me calm is the reverse of what should happen.  Her gentle smile and sweet touch leave me with no choice but to smile back at her.

As any mother knows, when your child asks for you, there you are.   Those are moments when inner strength and pure love take over without knowing how you do it.  You just do it.  You find a way to be ok.

Mothers, I want to thank you for all that you do.  I would like to thank my mother especially because there are many things she “just does” now and those that she always has.  During times when I am not sure how I have made it through a rough day, week month, or year, I sit back and think, I did it because I am her daughter.

I hope someday, when a cure is found and my daughter is thriving, she will look back and see a reflection of all of her strength, all of her courage, and all that she has done in her life to help me be OK.


Help us with this cause by supporting our Designer Bag Bingo.

4/5/18 – St. Charles Borromeo Church Hall – 7:00 PM

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.

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.