November 2016 – Kelsey's Kaleidoscope

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.

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Thankful Thoughts

Gratitude is often defined as being thankful. My family’s emotions have recently been on a full swing of highs and lows. Today, however, is all about thanks. What began as a seed idea has blossomed into a mission and a quest for awareness, treatment, and a cure for our beautiful Kelsey and all others affected.

Friday, we will gather to dance, laugh, hear a bit more about Kelsey’s disease from Kelsey’s favorite doctor, and count all of our blessings. One main blessing is the ability to type from behind my computer screen the words I often find difficult to say aloud. I thank you from the bottom of my heart for reading, sharing, and joining me on this ride to help find a better future for my baby girl.

Today is about thanks. Whether you shared Kelsey’s video (and if you think of it and have not, please do), said a kind word, purchased tickets for Friday, or donated any of the items for auction on Friday, Thank You! We have collected well over $10,000 worth of items to auction through both a raffle and a silent auction display. We have Flyers tickets, Sixers tickets, a Party Host package, limited edition Pandora basket & gift card, portrait & photo sessions, power washing, swim lessons, spirits, restaurant gift cards a-plenty, beauty products, and so much more. I have been overwhelmed this week with attempting to fit ALL of the generosity into a brochure you could actually read. There are just so many wonderful friends and family members around. My family and I are very grateful.

I am so excited to share all of the many bounties and treasures we have collected with you that I thought I would end with a photo sampling of the items we will have on Friday night. THANK YOU!

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Scars? You are Beautiful!

Before I was a mother, I never pictured how I would endure a cut, a scrape, an illness, a broken bone, or a stitch. I just hoped that I would find the strength if I was ever faced with a challenge because that is what mothers do…

This morning, my five year old blind-sided me, though.

We were cleaning her deep wound and changing its dressing, which remains an open sore both physically and mentally of her most recent biopsy. Her puffy, steroid-full face, started to stream with tears.

“What is it baby girl?” I questioned full of concern.

“How long will I be covered with a bandage here Mom?” she asked with a deeply concerned stare.

“Well, when we visit the doctor, she will let us know. For now, we will keep it clean and covered, OK?” I replied thinking that I aced it on the mom end.

“Well, that leads me to my worry, Mom,” she continued with concern and curiosity.

“Oh, (gulp of fear) what is it babe?” I asked hoping that I was equipped to answer the next few words she uttered.

“I can think of two ways the kids will view me when they see this wound, Mom. They will either think that I am a monster or a fool. I don’t want to be either. (She then completely burst into tears)… What other five year old has this gross part of her leg but a monster or a fool?” she stated with eyes of awareness and fear.

I stood absolutely speechless for a moment (an odd and difficult stance for me typically) to carefully consider my words and the weight they would carry. This was the first time through all that Kelsey’s little, scarred body has endured that she has been keenly aware.

“Kelsey, when I look at you, I see a girl with a battle wound, one of many that represents courage, strength, wisdom, and beauty. Neither monster nor fool has qualities like that.”

Silence and deep thought ensued.

Our eyes locked before we shared a silent, warm embrace.

I thought about this conversation all day long.

When I picked her up from school, she was beaming with a grin from ear to ear.

“I am SO happy, Mom! Today, I opened up to my friend about my fear. It was difficult to talk about with someone, but I learned that this friend is a true friend to me. Do you know why?”

“Why Kels?” I asked feeling both proud and terrified.

“Mom, she said that I was really great the way I am, even with stitches. She made me so happy because she said that I was not a MONSTER or a FOOL. Isn’t that SO great?”

I balled my eyes out for the duration of our drive over this two minute conversation, realizing just how much we all need to feel accepted and loved. I did not ace the early morning kitchen conversation because I am not five. This much was clear to me.

However, I can reassure her, encourage her, and do everything in my power to empower her.

I also have to remember that she is five.

The next day, another child made Kelsey feel upset and worried in school. Kelsey’s trusted friend shared Kelsey’s secret and told another little lady about the scar. Kels was scared about what everyone would think. I reassured her, encouraged her, and did everything I could to empower her once more.

“Kelsey, you are courageous, strong, wise, and beautiful. I heard a song today that spoke to all of the ways you feel right now.”

I played Alessia Cara Scars to Your Beautiful and together we sang, “You don’t have to change a thing, the world can change its heart. Scars to your beautiful. Scars to your beautiful.”

An open letter to the Philadelphia Eagles Cheerleaders Organization

An open letter to the Philadelphia Eagles Cheerleaders Organization:

Saturday, November 5 began early in my house. We had to be up and out of the house by 7:15 A.M. on a Saturday to make it over the bridge for the start of the Philadelphia Eagles Junior Cheerleading Session. If you knew the month we had leading up to this date and the week we endured that brought us out of the house before we typically leave on a weekday, you can understand why a part of me wished I hit the snooze button.

Then we arrived at Lincoln Financial Field for the A.M. session of Eagles Junior Cheerleading. We were greeted by smiling faces at every turn and walked up the escalator to the beaming faces and beauty that embodies the Eagles Cheerleaders. My spirits have been a bit broken and the thought of being surrounded by such beauty on a day where I wanted to hide under the covers was not ideal.

However, the cheerleaders are not just beautiful women on the outside. Those gorgeous gals talked with every little girl that arrived and made her feel confident and special. Their beauty runs far beyond face value.

My little girl especially needed to be surrounded by friendship, happiness, and a positive attitude this week because her spirits have been very fragile. She recently had a hospital stay that scared friends and family alike. This time, unlike other scares we have faced with her rare illness, she is keenly aware of her body, the awkward biopsy scar that still looks fresh on her calf, and the belly and cheeks that have grown puffy through steroid doses. It’s much more difficult to face these challenges and remain strong because she is asking me questions that I am struggling to answer.

This morning, no one knew of these struggles. Well, that is not entirely true. Four of these lovely women joined a fundraising event held at Pat’s King of Steaks in September. In fact, it was at that meeting where Kelsey was informed about the Junior cheer session. I am grateful for Amanda, the talented and stunning Eagles cheerleader, who told us about today’s events and helped us become a part of it.

When you live in a world world that can oftentimes seem selfish and self-centered, it is truly refreshing to watch women collaborate, encourage, and teach young girls. The girls learned a cheer and a dance today. That was the objective. However, the cheerleaders taught the girls so much more than a routine. They modeled poise, grace, and confidence along with every step.

While the Eagles Cheerleaders are gorgeous individuals with pristine physical appearances, they were encouraging young women to smile and have fun with the bodies they arrived in. There were girls of all shapes and sizes present that varied in age and experience level. The cheerleaders made each one smile and sparkle from within.

Personally, it has been about a month since I have seen that spark from within my daughter. I shed a few tears on my keys as I attempt to put into words just how much having your organization renew Kelsey’s energy and her smile means to me. I’m sure it is a combination of her body accepting new medication and as a result feeling a bit more like herself today. But my family has felt a bit broken as we have watched a child that typically shines who has been fading instead.

From the bottom of my heart, I want to thank your organization for helping young girls feel confident and excited to work as a team, smile, and simply have fun. I think we need more role models like you in our world who are promoting the right values and helping kids feel confident in who they are. I know that my daughter needed this lift today in more ways than one. Truth be told, so did I. Thank you.

Fondly,

A grateful mother

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#flyeaglesfly @eaglescheer

The Lies we Tell Ourselves

By: Brendan Connell

As parents, we often tell ourselves lies when it comes to our children. “My kid would never do that.” “It’s OK that my kid doesn’t do that yet.” I am very guilty of this when it comes to Kelsey.

For the entirety of our relationship, I have always been the optimist and Jen has always been the realist. The opposing sides have always worked for us. It’s one of the things that has made our relationship so strong. It’s also what has caused us problems and created tension when it comes to Kelsey.

I always try to say that everything will be alright. When she says her legs hurt or she’s overtired, I make excuses. I say it’s not a big deal. It will be fine.

The reality is that I tell these “lies” to try and help calm Jen’s fears, but to also help myself ignore the reality that is Kelsey’s illness. Focusing on the reality for me would be debilitating.

The reality for Kelsey is that her disease has many unknowns. What is known is that it can be incredibly dangerous. This is one of the things I often try to ‘lie” to myself about. It’s simply easier that way.

The happenings of this past week make it impossible to lie to myself, though. I did try, believe me. When Kelsey complained of leg pain, the “lie” was that the pain was caused by the heeled boots she wore for picture day.

Kelsey certainly made it easier to “lie” to myself when she walked around Storybook Land for hours, likely in excruciating pain, the next day. That night, however, the complaints, inability to walk, and marks were back with a vengeance. I was say, “Everything will be fine.”

The next day wasn’t fine, though. We rushed to the hospital.

The nurses and doctors helped feed into my lie by saying her blood work looked good. They sent us home after six hours of observation. I continued the lie and liked the look of the next day, too. I kept saying, “Everything will be fine.”

The next day, Kelsey’s body made it impossible to lie to myself. It appears that Kelsey took on my worst trait and lied to herself all day. She walked through and endured the pain all day long. but she could not hide it anymore. She collapsed. Her body showed that it was rebelling against itself because of her PAN. Her legs were so inflamed and bruised that Jen called me almost unable to speak from fear. She was ready to call 9-1-1 because Kelsey was so warm, lethargic, and full of marks all over. It was unlike anything we had ever experienced. Time was of the essence.

Three days and many tests later, we were all left lifeless. I could no longer lie to myself. Everything was not alright and will not be until we find a cure. Kelsey will always be at risk for organ failure, stroke, or worse.

So here we are, almost 5 years since we first found our way to DuPont Hospital with Kelsey. We certainly know more than we did then. Though it is not much more.

I still find comfort, as I did then, in lying to myself and saying everything will be alright.

I hope and pray that it will.

We can not do it alone. Please join us in these prayers and on November 25 for a night of cocktails, awareness, and hope. Please click on the link to purchase tickets if you have not already done so. We will be raffling a signed jersey from a Chicago Cub playing in game 7 of World Series today, among many wonderful prizes. Hope to see you there!