Catching for a Cure

September has been a month full of surprises and adventures.

First grade for Kelsey, a new school for her brother, and challenges at many turns.  Kelsey’s dad coaches her brother’s team and I coach her team.  Amidst new jobs and responsibilities, some days we wonder what we signed up for and why.

Then Saturday, September 30th rolls around.  It was a day that reminded you fall is truly in the air.  The day was full of energy, emotion, and ease because the Britto agency did the hard work!  They organized a softball tournament on behalf of Kelsey’s Kaleidoscope, Inc. and our old-aged team showed up (median age of 60!).  Though most of us who volunteered to play had trouble walking when we left, the truth is that the generosity, a sincere sense of family, and absolute gratitude extends far beyond the field.

Twelve teams gathered at Pennypack Park on the Delaware this past Saturday to show off their softball skills and get the W.  We barely came up with a team, but we brought heart and gratitude.

We left with new friends, a renewal of former connections, and a true sense of what is right in the world.  It was truly a gift considering several of the weekend happenings.

We also left (as any charity event on our behalf seems to do) feeling the sense of reality and urgency of genetic, orphan diseases.

If you could have seen Kelsey, the picture of health dancing to Despacito, Can’t Stop the Feeling, and some other Pitbulf favorites.  She was just as any other six year old should be.

As my husband so eloquently spoke, 90% of the time, Kelsey is joyful beyond words and the life of the party.

The other 10% is the difficult and hidden part that haunts us.  The Wednesday morning needle that keeps her from feeling her pain, the visits, the scans, and the unknown that keep her family members up at night.  The why and the worry of an invisible, vascular disease that we fear will take over at any moment.  Those are the moments unseen, but those moments help us spread awareness, build connections, and continue to ask for your help in our cause.

No child or family should endure the pain and ailment of a child.  This weekend, The Britto Agency recognized this even more and certainly made her family feel welcome and full of gratitude.  The $9000+ raised in total is unbelievable.  We are forever grateful to all of you who played a role, large or small.

We thank you for your commitment, your generosity, and your support!

You Got This!

First Grade terrain: kindness, courage, and curiosity.  Those three elements seem to be the keys to success.

New learning can be found at every turn and understanding is essential.

As I sat in Kelsey’s first grade chair and stared around the room at the other parents, I could not help but think – Kelsey, you got this.

For all that you have endured and all you dream to do – Kelsey, you got this.

Math facts may seem troubling and language may be puzzling, but Kelsey, you got this!

Restrictions may be come and go, but strength and hope will be there to assure that you have all you need – Kelsey, you got this.

As the other parents wondered about report cards and reading levels, I took the room in carefully – Kelsey, you got this.

It was full of energy, bright colors, and excitement if you ask me.  I smiled and I thought once more, Kelsey, you got this.

Stay strong, stay positive, and smile every day- Kelsey, you got this..

I am so proud of the curious young woman you grow into every day.  The one whose kindness, enthusiasm, and courage reminds me to strong – Kelsey, you got this.

First Grade terrain: kindness, courage, and curiosity – Kelsey, you got them.

Perhaps it extends beyond first grade classrooms.  Perhaps they are the keys to success for us all.

Today, I encourage you to be all three with respect and patience for all you encounter.

Lessons from the Egg Hunt

We recently attended a huge egg hunt with a myriad of kids and parents.  It is an annual tradition and we usually have a blast.  This year, a variety of circumstances changed and as a result, so did the hunt.  This fun-filled tradition ended up being full of life lessons rather than laughter.  That leads us right to the rules of life and the lessons learned from the egg hunt.

Rule 1: Life happens.  Be early or on time.

We made it with only a few minutes to spare.  Traffic happens, life happens.  Be ready, but be on time.

The early bird does get the worm.  Those minutes to spare put us far back in the line-up.

However, I taught my children to be polite and wait their turn.  When the bell rang to initiate the hunt, all of the children would all be in the same place.  “Just be patient and wait your turn,” I reminded them.  

My two children did just that.  They were so excited.

Rule 2: Everyone does not follow the rules.  Do not let a poor example ruin your day.

One minute before the bell rang, a parent not only placed herself in front of my children, but also moved her children in front of mine as well.

What was I to do?  Decisions decisions… It was a trying moment for me (to say the least), and I had many phrases in my head that I did not want my children to hear me say.  

It was a moment to display self-control.  I took a deep breathe and loudly stated my apologies that not everyone in life plays by the rules (as steam was likely coming off of my scalp)!

I smiled and told them to have fun!

Rule 3: Be your own advocate and speak up when necessary.

Seconds later, the bell rang.  That woman was a steady blockade to both of my children and unfortunately the crowd had no other holes for my children to sneak through.  I had to step in at that point, politely excuse my children, and get them into the hunt!

My children were watching my every move carefully, and I had to decisively think through my every word and action.  

My words needed to echo what I want them to know and learn in life.  “Careful what you say, Children will listen…

Rule 4: You can’t always get what you want.

Minutes later, the hunt was over.  My son was easy to spot.  He had very few eggs but wore a smile anyway.  My Kelsey was harder to locate because she was persistent and still on a mission to find a single egg to call her own.

It did not happen.

Kelsey came out of the hunt completely empty handed.

I was certainly rethinking my earlier patience, but also reminded myself that this was a teachable moment.

Rule 5: Your family will always be there when you need them.

Consequently, those minutes and my patience cost Kelsey her eggs this year.  Her will was strong and her determination fierce, but with an empty basket, all she could do was run to me for a secure embrace.

I could not come up with an egg.   They were gone within two minutes.  I could only share the hug and tell her that there would be many more fruitful egg hunts in her future.  There will be.  I know that.  

It did not help.

With that came her brother to offer her a few eggs of his own.  He only had 6.  It was a rather precious moment.

I may have allowed a mom to block my children, but I also had a few tears of pride when my son shared his eggs.  

A brother was there for his sister.  I must be doing something right.

Rule 6: Sometimes, a kind gesture happens when you least expect it.

At that precise moment (I kid you not), the same woman who blocked my children walked by with the largest basket around.  It was overflowing with eggs…  Boy was it hard to hold my tongue then and there.

I had to repeat, “Careful what you say, Children will listen…

So I instead looked the other way, literally.  It was all I could do to remain calm.  What I saw when I chose to look at the situation differently was an entirely different perspective.  I saw a very thoughtful parent and sibling pair approaching my emotionally charged scene.  Her children had baskets with plenty of eggs, and I guess she watched our dramatic finish because her children offered some of their eggs to mine.

When one door closes, another one usually does open and the results are usually worth it.

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.  

Selling Kindness and Giving Back

This evening, soon after injecting the second medication of the day, we will smile and walk around a local “market.”   This market is a school project for future business entrepreneurs to reveal a business plan and “sell” a variety of products to reflect their business model.  It is a fabulous learning experience.  However, there is much more to this market for my family.

About a month ago, one of Kelsey’s teacher reached out to me regarding this event.  She wanted to let me know that her ten-year-old son would be participating in this event and donating ALL of his proceeds to Kelsey’s Kaleidoscope, Inc.  Maybe it is not the best business model, but it certainly a child who understands compassion, charity, and community.

Touched.  Grateful.  Overwhelmed by kindness.

The tumultuous nature of the past few months has also created a natural break in fundraising.  However, my heart melts to know that a ten year old young man did not stop thinking.  This incredibly generous ten-year-old boy has never even met Kelsey.

To Kelsey’s teacher for sharing Kelsey’s illness with her family and raising a young man who would think more of someone else than of himself, thank you.  To a young entrepreneur who took it upon himself to bring a bit of sunshine into the sunshine of our lives, thank you.  If you happen to stop by the event this evening and inquire about Kelsey’s Kaleidoscope, Inc, thank you.  It is the support and the spirit-lift from those around us that keeps us strong even when we feel that we are hanging on by a thread.

The sleepless nights, the relationship stress, the avoidance of public settings and birthday parties due to the vast array of germs, and everything else good and bad that January has been comes to an end this morning as the sun rises to February.

This month looks hopeful and bright already.

Thank you, February and thank you to an amazing ten-year-old and his family for sharing the love…

If not, I’ll just go tell a teacher

“I’m so worried about something, and I need your advice,” I hear Kelsey say to her big brother before bedtime.  I wait at the door to listen for a few minutes.  I always love to hear their conversations and the bonds they are forming as siblings every day.

“Sure, you can tell me anything, Kels.” he replies.

“Well, I’m worried about going back to school.  I have these giant red marks all over my arms and legs.  They just keep itching me.  What if all the kids laugh at me and think I’m a monkey?  I am so worried they will say I am a monkey.”

Now, of course, I start sobbing and really cannot go in now.  I am hoping that big bro has something poignant and reassuring to say to Kelsey.

“Kels, two things.  First, I am there at school with you.  If anyone says a word or dares to laugh at you, they will answer to me.  I will say, stop giggling.  How would you like to get a needle every single day?  I think that my sister is braver than you can ever hope to be.  And if they still laugh, I’ll just go tell a teacher,” he spoke as the sage I can always count on him to be.

So 2017, here we are.  I hope you will be kind and generous to Kelsey.  I know that her family is here to support her, our search for a researcher continues around the globe, and I pray that no one dares to notice the marks or the itching.

It is one thing to actually give a daily injection that is working wonders, making it a little bit more bearable to deal with the pain.  It is quite another to have her think about not only the medication and the anguish of that injection every evening and morning, but also to worry about the perception of other kids.

At least you can always go and tell a teacher.  There is certainly comfort knowing that.

2017, please be kind.

Special Announcement

Every night at dinner, we talk about two things: our favorite part of the day and our greatest challenge of the day.  Sometimes we laugh together, sometimes we problem solve, and sometimes we talk about a better way that we could have handled the situation.  This is a part of every night that I treasure.

At the dinner table last night, Kelsey shared that she had a “special announcement” to make.  

“Family,” she formally addressed us first, “there is something that has been on my mind lately.  I wanted to tell you about it.”

“Here we go,” I think.

“I have learned that the world can be beautiful and full of happiness or it can be mean and cold.”  Her father and I looked at each other without really knowing how to respond.

“How at five years old has this been on her mind lately?” you may wonder at first.  Then you think back over the past few months that she has endured: a hospital stay, four emergency room visits, weeks missed of dancing school, days missed of Kindergarten, an emergency visit to the NIH, steroids, a more potent medicine, a daily injection to better manage her pain, and the giant red patches that itch her and hide under her sleeves and her pants as a reminder of that daily torture.  You think about the wonderful moments of the past month alone, including: singing Christmas carols, Santa Claus coming to town, a holiday show, family time, snuggling with her puppy, baking cookies, making ornaments, and watching holiday movies.

Thinking through all of the sorrow and triumphs, all of life’s challenges and favorite parts that we relive every night, I inquire, “What makes you say that Kels?”

“It’s just something I’ve been thinking about lately.  Most importantly, I really wanted to say, thank you for making the world beautiful for me Mom and Dad.”

Profound.  Insightful.  Beautiful.  

Painful and joyous simultaneously.  Her announcement gave me all of the perspective I needed to end the day (and 2016 for that matter) with a smile.

Here’s to hoping that 2017 is filled with far more beauty and much less pain for my beautiful daughter.

To many more favorites than challenges for you and yours in the year ahead, and to many more special announcements…

Together, we can…

Ralph Waldo Emerson once said, “cultivate the habit of being grateful for every good thing that comes to you, and to give thanks continuously…” This week, I have given thanks continuously.  I am still in shock of the overwhelming elegance, promise, and love felt at Valleybrook Country Club on Friday night, November 25.

Maybe it was because the event followed Thanksgiving?  After all, Thanksgiving is a time to reflect on the year that has passed and all the blessings in your life.  During Thanksgiving dinner, Kelsey said that she was grateful for one thing.  She said, “I am grateful for tomorrow night.”  Grateful seems an understatement.  My family fought back tears at her sentiment because we realized that she is already aware of kindness and gratitude at five years old.

I encourage both of my children to stay positive, give thanks, and count every blessing.  It seems that they are noticing and applying the cultivation of gratitude in their day to day lives.  For that, I am grateful.  

I think back to Friday evening with wonder.  I stood before the guests in absolute awe of the compassion and warmth that everyone had for Kelsey, our organization, and our cause.  We are still overwhelmed by the support and generosity shared at Valleybrook Country Club.  The collective efforts of the night helped us raise $11,000.  

The support we received on Friday evening both fueled our mission and strengthened our purpose.  We are committed to raising awareness and finding a cure.  This week, we are one step closer to those goals.  We are grateful beyond measure.

In closing, Helen Keller states that “alone, we can do so little.  Together, we can do so much.”  Kelsey’s Kaleidoscope, Inc: A New View for PAN is just getting started.  We are on a mission to raise awareness and find a cure for Polyarteritis Nodosa and all affected patients.  Our affected patient is grateful for you and so are we.  Together, we will do so much.  

15241199_1145208078895606_3399869107634811905_n 15241430_10211909604562474_894589293199788637_n 15250907_10211203072102217_2952727769104601664_o-1 15252545_10211202947699107_5054202393553561775_o