support – Kelsey's Kaleidoscope

“Progress will not prevail through silence.”

I can vividly picture the buckets of rain pouring down on my car in the spring of 2004 before GPS was on my phone or in my car. I was completely lost in a foreign place and saw spotlights in the Home Depot parking lot up ahead. As the daughter of a handyman, I knew those lights anywhere.

I safely parked and called the only person I could, my Dad. He knew exactly how to help me find this hidden school in a town I knew only through my google search. That is my father for you. It seems that he is always there any time I need him with the exact answer or helpful hand. Whether it is repairing a flat tire on the curved and very dangerous on-ramp to 295, sitting with me through every day of Kelsey’s hospitalizations and always arriving with a large pumpkin DD coffee, fixing anything for me in a pinch, or building a deck with my husband, my dad is always the one.

And so my father saved the day yet again on that Spring evening of low visibility as I was about to face my first interview in the world of education. The Superintendent and Principal were holding 15 minute interviews in the library throughout the day, and I believe that I had the final appointment of the night.

Now five minutes late and wondering if they would still be inside at 8:20 P.M, I found the door locked. Lacking an umbrella and holding my teaching portfolio that grew soggier by the second (thank you to whoever created plastic sheet protectors, by the way! Without you, I stood not a chance.), it seemed that Murphy’s Law was enjoying this hour on my behalf. When I finally reached the correct door, now likely ten minutes tardy, both Superintendent and Principal seemed warm and full of energy after a long day at work.

Late and wet, I forged on with my educational jargon, apologized profusely for my tardiness, and went with the honest approach about the rain. It was not raining when I left my evening class in Ewing, NJ nor was there a cloud in the sky all day while I was student teaching. I did not even think to grab an umbrella just in case. I was, after all, still a college student.

The two administrators could not have been nicer to me and seemed to let my joke and my honesty lighten the mood. I had an immediate comfort and connection with these two, and the feeling must have been mutual.

The journey to a job offer did not end that night, and three more interviews, including a demonstration lesson, were still necessary hurdles to cross. At least I knew the way now. The sun seemed to shine and mock me on each of the subsequent interview days that followed this initial test of my will and my patience.

That day was serendipitous after all and maybe it was Murphy’s Law that made me stand out. Whatever the case, I was offered a second grade teaching position before I graduated college. I was extremely proud.

After the first blunder, I read more about this tiny town and was impressed with all that I learned. Over the years, I have met countless families who have done everything from the extraordinary to the everyday necessities for their children. I have assisted in the home schooling of a student near and dear to my heart who still battles the effects of Leukemia. I have hosted tailgate parties with my grade level partners to celebrate local sports teams, created “Olympic” events and reading challenges with my incredible colleagues, and loved every one of my students dearly.

I would like to think that I have made a difference in the lives of many. They have given me joys, challenges, and proud moments that I will never forget. Each one has taught me something about life, humanity, and the pursuit of academic excellence.

The relationships that I have made in this town surround me in almost every aspect of my life. Over a decade of connections add up quickly. The irony of Saturday for me was that the relationships that lifted me up this weekend are the same ones I kept in the dark for so long. My journey was purposely kept hidden because it was easier, I was in denial, and I felt that it was the most professional thing to do.

The students and families who came to support Kelsey’s Lemonade Stand on Saturday at Chestnut Branch park filled my heart with more happiness than I am able to describe in words. Through the efforts of Tina Munholland, her family and with the assistance of all members of the Lutz, Buckley, Capasso, Kulback, and Buck families (among countless others that I admire and appreciate), one town came together to raise more than $1500 to help my family find a cure for my daughter. Though the money was incredibly generous, Saturday meant so much more than the donations.

Then this afternoon, I unexpectedly encountered a former student who is now in sixth grade. We did not expect to see one another. Seeing him was surreal for me. There he stood, tall and proud in a Kelsey’s Kaleidoscope t-shirt I did not even know he owned. His grin spanned from ear to ear, and I was left speechless. I was truly overcome with emotion as I am now typing about the love and support I have felt over the past few days for my daughter’s cause.

Tears stream as I reflect on all of the years and the good I thought I was doing. I realize now that I am just lucky to be a part of something amazing. There is a tremendous amount of great at every corner of that tiny town. Those, like me, lucky enough to call it our work home only seek to enhance the great and make it exceptional whether we realize it or not. How fortunate we all are.

Silence is said to be golden in a theater, but I have found little value in it elsewhere. My new motto is “Progress will not prevail through silence.” Thank you for listening, supporting, and promoting progress. Thank you Dad for somehow navigating me to that hidden school and thank you to the Superintendent and Principal who gave me a chance.

These words are a humble attempt at my heartfelt appreciation, though they could never fully convey my sincere appreciation.

#newviewforpan

Wit Us All the Way

June 10, 2014 is a day that I have tried to forget every day since. I remember the moment that Kelsey’s doctor walked into the room with eyes that said too much. I knew that this would be the beginning of the journey, and I have gone through the motions of anger, denial, exhaustion, and depression since.

If not for my mom on that night, I think I would have broken. Instead, when I went to pick up my son, I was given a dish of pasta and a goblet of wine. I could barely stomach either nor the words to speak all that I had learned at 5:05 PM. I wondered if it was the terrible nightmare that kept me up at night every evening since I knew it was a possibility. “Polyarter…er… I guess I should learn how to pronounce this,” I thought.

I googled the entirety and read the very little that was written on the disease, especially for a three year old. The New England Journal of Medicine provided the most detailed account of the new findings and patient studies to date. Though little was written, I found that the more I read, the less I could handle. I could barely get out of bed.

As you may be thinking, the days, weeks, and months that passed following the first steroid dose and the booked chemotherapy appointment were a battle. We finally had a diagnosis and a plan, and for that I was grateful. The National Institute of Health saved us the side effects of the chemotherapy infusion by offering us the option to use Enbrel instead as a TNF blocker. The doctors had good reason to believe that it would improve Kelsey more than chemotherapy and virtually eliminate the risk of stroke, “as long as we can stay ahead of the dose,” they cautioned.

Always stay ahead of the dose, we try. Sometimes staying ahead feels like lagging behind, and it was for that reason that my family and I finally decided that our silence was only causing an implosion of worry and pain. To stay ahead, we need more.

Therefore, on June 23, 2016, I truly began to open up about the feelings and struggles I had endured as a mother. If you read this post or have read others, I thank you. I have found a great deal of strength through the keys of this keyboard and the kindness of many who do not realize its effects.

September 11, 2016 is another key day on my journey for Kelsey. A heavy day for our nation that evokes sorrow, hope, and patriotism. The fifteenth anniversary of a difficult memory now holds a new place in my heart, too.

Maybe it was watching the footage of the twin towers with my son that morning that started the nausea. Or perhaps it was the reality that today would be the day my family’s mission became a public reality.

As easy as it is for me to type our tale and share it behind a computer screen is as difficult as it is for me to openly discuss my feelings. September 11, 2016 would force me to do that as Pat’s King of Steaks allowed us to host Cheesesteaks for Kelsey. Words cannot truly express what an incredible day it was for my family.

The support, love, and generosity of family members, friends, and strangers near and far, was truly unbelievable. Some I have never met, some I have not seen in seven or thirty years, and some just a few hours. With each new smile, $1.00 donation for a bracelet or through your purchase of a steak, you showed my family and its mission support. The shades of blue I have felt for two years started to turn a more purple hue. We cheered the Eagles on to victory and then had four beautiful cheerleaders grace us with their spirit and support following the win. It was a mix of green, red, white, blue, purple, and pink.

It was a beautiful day to be in South Philadelphia. We came together for cheesesteaks and we came together for Kelsey. Love truly transcends and love is what carries us through.

If you called, texted, came in person, bought a bracelet, or thought about our efforts on Sunday: THANK YOU. I always tell my kids that they can move mountains, just as Dr. Seuss has told me for many years.

Today, I am starting to believe that maybe I can, too.

Warmth

The summer sun warms my heart and gives me enormous hope. There is laughter, water games, and trips to the park.

The lingering hours of sunlight also remind me to count my blessings. These blessings exist in kind messages, warm smiles, and the generosity friends and family members have shown. I am realizing how tremendous my support system is both near and far. This week, I have reconnected with friends, received kind messages, and felt an overwhelming sense of love and gratitude.

My husband has also been an incredible source of support. He is truly my rock. Whether I need to laugh, cry, or say nothing at all, he always knows how to let me be. My strength often grows with his presence.

Then there is my mother who makes it her daily mission to make sure that I am okay and doing what I need to do for myself. Sometimes I don’t want to respond to her because I’d prefer not to deal with the truth. My mom always has a way of getting the best out of me, though, as only a mother can. A mother’s intuition is one of the strongest forces on the planet if you ask me.

The National Institutes of Health are also on my mind. My family’s recent visit there fell on my birthday. It was fitting in a way because the work done there is a gift. although it is a present you hope not to need. I often leave with more questions than answers, but I know that doctors and researchers there are always on a quest to answer the unknown. It can be a lot to process while you visit the facility and talk with so many brilliant minds. The conversations can be heavy, but I appreciate the level of care they provide.

This morning’s intense sunshine reminds me of today’s appointment. The intensity will come sans sun in an air conditioned room as I will learn the results of my own genetic testing. Like so many recent appointments for my daughter, I will likely leave with some answers and many more questions. Whatever the results, I will leave with my support in place and the summer sun following me home.

I may need a bit more warmth today than usual.

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