Green with Pride and Gratitude

Fly. Eagles. Fly.

I cannot seem to get enough.  Something magical was in the air on the evening of Sunday, February 4, that brought the best of the best on the field and created the iconic Philly Special.  Excellent clock management, tough calls, and big decisions showed talent from all aspects of the game: offense, defense, and coaching staff.

The night was exhilarating and the absolute buzz and thrill in the air around the city is actually indescribable.

This post, however, is not about those moments.  Those who bleed green understand and feel the pride and gratitude electrifying the city.  We knew that feeling would be surreal as the Underdogs became the Wonderdogs.

More impressive and noteworthy in this moment for me is the sportsmanship and faith displayed by the Eagles organization.  They have demonstrated responsibility as world class athletes and represented the city of Brotherly Love with respect, courage, perseverance, and a positive attitude.  Teachable moments surround my home daily.  I try to capitalize on them when I have the chance.

This week, the talk of the game has made these teachable moments easy to find.  Not shaking your opponents hand?  I would not tolerate that as a mother in a junior wrestling match, let alone on a national stage.  Listening to the announcers who tried to downplay the talent and openly doubt the outstanding athleticism displayed by the Philadelphia Eagles was hard to explain to my children, too.  Teachable moments.

It’s about character, integrity, and the small failures that lead to great success.  Winning with humility and losing with passion and dignity are challenging concepts to teach.

Championship games excite cities, invigorate many, and inspire more.  This championship can also assist us in teaching our children about the values of courage, determination, perseverance, and sportsmanship.

To Nick Foles, Doug Pederson, Corey Clement, Zach Ertz, Alshon Jeffery, Jason Kelce, Fletcher Cox, Chris Long, and the entire Eagles organization, thank you for helping my children understand how to win with grace and respect.  Thank you for exciting the city.  Thank you for the memories!  My heart bleeds green with pride and gratitude over a well-deserved season and incredible victory.

E-A-G-L-E-S, EAGLES!

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.

A New View in Review – 2017

Kelsey’s Kaleidoscope, Inc,: A New View for PAN

This year, we celebrate your generosity and appreciate your willingness to learn more about the rare disease we aim to cure.   We hope to continue our efforts in 2018 to raise money in support of research efforts on an international scale.


AMAZON SMILE LINK

Please click on the link above to support us as you shop on Amazon!


Rosemary Connors NBC10@Issue

Kelsey’s Kaleidoscope, Inc.: A New View for PAN was featured on NBC10@Issue with Rosemary Connors to raise awareness and share information about the disease we aim to cure and our fundraising efforts to date.


Second Annual Gala

Dr. Chip Chambers explained the terror or the rare disease dada2, which manifests as PAN for Kelsey, at our Second Annual Gala this November.   Dr. Chambers is the former Chief of Endocrine Surgery at Vanderbilt University Medical Center in Nashville, Tennessee. He continues to hold his clinical faculty appointment at Vanderbilt, and he operates and teaches residents at the Veterans Affairs Medical Center. Dr. Chambers’ two children were diagnosed with DADA2 in March 2014, just one month after the first articles describing the disease were published in the New England Journal of Medicine. He has spent the last two years making connections among clinicians treating patients with DADA2 all over the world, as well as patients, their families, and researchers studying the enzyme.

During his informative and descriptive speech, he asked the question of all in attendace: “How would you feel if your five year old was having strokes and the doctors cannot tell you why or tell you what to expect next?”

Having lived through that pain, I can tell you the answer.  The answer is fear of the unknown, fear of what you will wake up to every morning, and fear that you are not and have not done enough as a parent.

For those of you who attended our Gala, thank you.  No parent wants to live in fear or to feel helpless for their child.  Your support, generosity, and love helps spread feelings of hopeful over helpless.

We surpassed our efforts from last year and raised just over $25,000 that evening.  We will continue to advocate and research in 2018.


Dr. Kate Rubins

Kelsey was able to meet Dr. Kate Rubins, the first astronaut to sequence DNA in space this April.  Kelsey was given an opportunity to speak with Kate and ask her questions one-on-one as a dada2 patient through the NIH.

Dr. Rubins was poised, patient, wise, and a true role model.  I would have hand picked Dr. Rubins for my children to meet.  She, however, picked us.


Catching for a Cure

The Britto Agency organized a softball tournament on behalf of Kelsey’s Kaleidoscope, Inc.: A New View for PAN this September.

Twelve teams gathered at Pennypack Park on the Delaware to show off their softball skills and get the tournament win.

The Britto Agency helped us raise over $9000 during the Catching for a Cure event.  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!

 



St. Paddy’s Day

On March 17, 2017 we hosted a St. Paddy’s Day Happy Hour to fundraise for our cause.  Our collective efforts  raised $4,000 on St. Paddy’s Day.  Sláinte!


What is DADA2?

To read more about the gene deficiency that manifests as PAN for Kelsey, please click on the link below to learn more.

http://www.dada2.org/learn

Hope & the Rookie Rockette

There is something fantastic about being in NYC during the holiday season.  It is a feeling you get coupled with a sheer sense of adventure and excitement that seems electic.

Walking through the city and Rockefeller Center with my family would have been special in and of itself.  However, we connected with The Garden of Hope.  They read aboutKelsey and her disease, and they offered us an extra special treat following our show.

The curtain barely closed as an usher arrived at our row to gather Kelsey, her brother, and her cousin.  She led us straight backstage through the hustle and bustle of the crowd.  Awaiting our arrival were two Rockettes.  One was a veteran in her seventeenth year and one was a rookie.  Both were beautiful, kind, and genuine.  While they dazzled us on stage during the show, they certainly made Kelsey feel like a star.

Their grace, patience, and kindness warmed my heart.

Thank you to The Garden of Hope for spreading kindess and helping my little girl feel special.

Enjoy  a video summation of Kelsey’s experience below.

 

Lost in Loss

I must admit, I was feeling proud and full of holiday spirit when I came home from my son’s wrestling match.  I was so proud of his efforts and his determination.  I sat down with a cup of coffee and a smile.  I beamed with pride as I thought about how my typically stoic and serious son confidentally taught two Rockettes the backpack dance.

Feeling truly proud of my son made the news I read on the dada2 support group even harder to read.  I cannot honestly say what made me click on it at that moment.  Needless to say, my mood shfted immediately and the tears still stream as I think through what I read in disbelief.

With a very heavy heart, I read that one of the young men who suffered from dada2 was cripled in pain to the point where his body required a bone marrow transplant.

As we prepared and planned for our second annual gala, this young man prepared for the fight of his life.  His November transplant felt hopeful.  However, his body did not make it through the risks and complications of such a procedure.  He passed away less than a month after his transplant and less then a week before Christmas.

The warmth of December and hope I have felt for an entire month were shattered when I read the news his family shared along with their frustration, confusion, and pain.

For this family and all those who suffer from PAN and dada2, this day is the one we cannot sit around and watch quietly.  This day is the reason we write, we raise awareness, and we fundraise as fiercly as we can.  This young man’s battle will not be forgotten nor will his family’s grief.

This one is for you Trevor.  May your family find peace in the New Year as I am sure they feel void of all emotion as this year comes to a close.

Tonight, Kelsey cried herself to sleep in fear of Mr. Needle and her Wendesday Woe.  As I consoled my child and prayed for answers, I also felt a mixture of gratitude and anger for all that I know and all that I cannot understand.

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!

Luck of the Irish

“May your troubles be less

And your blessings be more.

And nothing but happiness

Come through your door” Irish Proverb

Luck of the Irish proudly shines on St. Patrick’s Day.   It seems to have held much promise personally.  The offer to sell my first home came in the late evening on March 17, my sister in law received her marriage proposal on March 17, and blessings seem aplenty on such a festive day.

It seemed like a perfect day to raise a glass and share a toast for my baby girl.

The day started off with happiness and many green accessories on the children.  Kelsey was full of joy and laughter.  She enjoyed a visit from a leprechaun at school, who even left a questionable green liquid in the potty!  Her day continued with a book “switcheroo” from a friend’s desk, and she came home with a beautiful drawing and writing that stated, “I feel lucky when I have my friends and my family with me.”

Lucky with friends and family, indeed we are.

Our collective efforts over the past few weeks and the generosity of our friends and family helped us raise $4,000 on St. Paddy’s Day.

May the luck of the Irish be with you if you shared a sentiment, donation, or gathered with us Friday evening.  

My family continues to be overwhelmed by the love and support of our friends and family.

As we walked to the car following the party, I must admit I was overcome with emotion.  I said to my husband, “Doesn’t all of this leave you numb?  It is hard to be in these moments and accept that this is our reality sometimes.”

“It isn’t real to you when you inject our child every morning?  That’s when it is real for me.”

My Irish husband sure put it into perspective.  We offer our sincere appreciation and thanks to those who know our reality and supported our cause.

Our village is growing, and we are extremely grateful that it is.  Sláinte!