Uncategorized – Page 29 – Kelsey's Kaleidoscope

The Warm Sandwich

It was December 14, 2011 around 2:30 P.M. when we first arrived to the E.R. My heart racing along with my mind. The moment it hit me was when we placed Kelsey on the scale at registration and started to talk about the past few weeks. Her hospital bracelet acknowledged that this was truly happening.

I realized how desperate we were for medical attention and how I truly should have seen this sooner.

From that moment, we were treated with respect, care, and attention. The doctors were compassionate and concerned.

By the time the evening shift change occurred, we were impatiently awaiting an answer that no one was able to provide. We had likely been there for seven hours without food or a glass of water. I was still nursing my ten month old baby girl so she did not seem to notice that her father and I denied ourselves nourishment because we were completely numb inside. Nursing seemed Kelsey’s only comfort in the world beside my arms throughout the past few weeks. I think it was my solace, too.

Later on in the evening, we met a husband and wife team of emergency room doctors. I will never forget their eyes of concern or the sandwiches they brought Brendan and I around 11 PM. According to the compassionate female doctor, whose name I do not recall five years later, “you really should eat something.” Her warm brown gaze met mine. Whether she was a mother herself, I do not know. She certainly had a nurturing and motherly sense about her regardless.

Even though I had not an inkling of hunger, that sandwich was necessary. For it was a source of nutrition, but even more than that, it was a sign that we were in the right place.

Even if it was a warm turkey and cheese sandwich at 11 PM, it was exactly what I needed.

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!

Brown Bear, Brown Bear

Brown bear, brown bear, what do you see?

I see an IV staring at me…

Wait. That’s not right. Nor is is a stretch from the truth. Wednesday, October 19 was supposed to be “Brown” day in Kindergarten for Kelsey, full of activities from the beloved story Brown Bear, Brown Bear, What Do You See? by Eric Carle.

Instead, Kelsey was admitted to a Children’s Hospital. She was devastated. Whether it was the book itself or the reality that life was not going according to Kindergarten plan, Kelsey was beside herself about missing the day. A Child Life member was kind enough to make sure Kelsey had a Brown Bear to hug during her stay, but even his warmth could not completely wash the tears or the worry away from her eyes. Worry and fear are not the faces a five year old should wear.

Earlier that day, Kelsey was in school, hiding her pain and inner torment. Her will is too strong to admit Kindergarten defeat. She said not a word and quietly made it through the day.

When I saw her walk out the door wearing a wool sweater on a day that was 86 degrees warm, I could not help but crumble inside. It was the inability to walk, feverish warmth, and the prevalence of deep purple and red lesions all over her legs that led us into the Emergency Room for a second time in two days. Unsettled and uneasy is how we felt with the urgency and abundance of testing that was completed in just a few hours time.

Overnight, Kelsey underwent countless scans and even a biopsy to discover the reasons behind her body’s attack. By 3AM, we were void of emotion and fuel in our tanks. We collapsed for a few hours as best as we could manage through the vital checks and check ins.

Kelsey awoke the next morning more energetic than she was the evening before, but she was quite cranky and very irritable. Can you blame her? Between the new piece of her body taken out for study and the evening spent without dinner or proper sleep, she had the right to feel any way that she wanted. While I fully supported the crankiness, I just wanted to take the pain away.

My poor, fragile little girl is also incidentally my beacon of strength.

I have been forcing myself to eat and stay strong through it all. If I am being honest, a new type of distress has recently set in as a result of the unknown and the many unanswered questions this episode raised.

Seeing Brown Bear staring at the IV and watching a five year old girl utterly crippled with pain made my family’s quest for answers even stronger.

We pray for strength, we pray for a cure, and we pray for answers, yet again.

We can not do it alone. Please join us in these prayers.

Please join us on November 25 for a night of hope to help us get one step closer to a cure. 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 the World Series right now, Rodan & Fields products, restaurant gift cards, Tide Water Aquatic Swim School Lessons, Photography sessions, Mary Kay products, a Pandora bracelet and gift card, and many more.

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A picture is worth a thousand words

A picture is worth a thousand words, or so they say.

This weekend, I choose to post a picture of my family enjoying a picture perfect fall day. It received many likes and smiles. What you did not see in the photograph was the pain behind my sunglasses or the tears Kelsey had shed the night before.

Kelsey could not walk during the evening hours that preceded the photo and new skin lesions appeared on her ankles that has both doctors and our family concerned. We almost opted out of the family fun due to the pain, but thought that the fresh air and a stroller ride might be therapeutic for us all. Without knowing what the evening would bring, we decided to make hay while the sun was shining.

All seemed well and the photographs remind us of the fun we were able to have in spite of worry we had within. However, as soon as Kelsey sat down for the night, her eyes could no longer hide the pain. Her tears of sorrow expressed all of mine, too. The strongest and bravest girl I know was out of courage. Her vulnerability forced my strength.

More widespread and deeper marks appeared throughout the evening hours and a visit to the emergency room was required. I think to Wendy Mass’s poignant words, “Be kind, for everyone you meet is fighting a battle you know nothing about.” I think to the unsuspecting onlookers at the restaurateur who watched me carry a sobbing child that is half of my body weight at this point because she was unable to walk. They looked kindly and said, “Poor girl. Is she sick?”

“How do I respond?” I thought as I tried my best to keep it together for my kid. On one hand, I wanted to project everything I was thinking on them. On the other, I just want to smile and discuss nothing at all. “She just hurt her leg. We’re taking her home to take care of it now,” was what I managed to say.

Kelsey is full of sunshine and all of those who meet her remark. This is nothing new and even the ER nurses and doctors were enamored with Kelsey and her positive presence. They also noticed me, trying to fight my tears and cover them with the sand-paper-textured paper towels that were present in the room. I was touched when one nurse caught my glance and returned with a box of tissues. She has no idea how perfect her timing actually was.

For it was not just my eyes who needed them. My positive and courageous Kelsey needed to utilize the box before we were released, too. Even a five year old’s sunshine can be clouded by all that she can not understand.

As we wait for answers, find new marks, watch her closely from a hospital bed, and worry with all that we have within us, we wonder why we can not just keep that sunshine shining brightly all day long.

We pray for strength, we pray for a cure, and we pray for answers. Please join us in these prayers.

Without a Sound

Martin Luther King, Jr. once said, “lightening makes no sound until it strikes.” While I was sure that lightning struck within me once, I recall the emotion and passion evoked from deep within me as I demanded more answers for my child. The truth is that the real storm was just about to begin. It was December 2011.

The results of Kelsey’s blood work were due in by the morning. Now on a mission, I called at 8AM sharp. “A doctor will call you with the results as soon as possible,” was the reply I received. “Ok,” was mine because as much as I felt I was ready, I did not actually want to hear the doctor’s words.

Bright and early, I was patient. I thought that a doctor may not be in yet for the day. I was “nice” and I was patient. However, that same frustrating phone call happened again at 9AM, 10AM, and every hour on the hour until the thunder came out from within me. At 1PM, I had enough.

When the same reply came on the other end of the phone with the woman on the line who I spoke to five other times that day, I physically lost control. I remember getting bright red and angry in a way that I had never been before. Mamma bear was coming out.

Looking back, I could have been a bit nicer, but I was not hanging up the phone. I exchanged some unpleasant phrases about the office and the lack of communication that was happening. I must have been persuasive… because one minute later, I had a doctor on the line.

I can picture myself like it was yesterday, crouched on hard wood floors hearing, “You need to get to an Emergency Room as soon as possible. CHOP and DuPont would be our recommendations.” I could hardly breathe. Due to the anxiety that filled my brain, the tears that streamed instantaneously, and the dagger I felt drive through my heart, I projected on that poor doctor. I was not kind. I was not nice, and I did not hold back my annoyance at this news coming five hours after it should have.

To this day, thinking about the fact that I sat for five hours when I could have been under medical supervision for most of them is almost unbelievable. I wondered what “urgent” meant if it was able to wait five hours. Regardless, I did not take that news quietly.

I hung up the phone and without saying a word, my husband knew what to do. He called my parents and arranged for my son to be taken care of for the rest of the day and overnight. It was clear that we would spend the night in a children’s hospital. One night seemed reasonable…

My mom picked my son up almost too filled up with tears to see the doorknob. I could picture her on the couch with the same worried gaze that she wore weeks ago saying, “Something is wrong.” Indeed it was.

My husband and I did not speak on our way. There were no words that could prepare us for the days and weeks that would follow.

Instead, we clutched tightly to each other. It was the best we could do during the most unnerving and chilling car ride of our lives.

Lightening had not struck yet, and therefore we made not a sound.

May the Obedience be with you…

Back in 2007, before I had a clue about parenting or life’s true requirements of working and being a parent, Brendan and I talked about having at least three, maybe even four, children.

As 2009 brought us the absolute joy of a baby boy and 2011 delighted us with our baby girl, we had too many blessings to count and ample reasons to be grateful.

We had an incredible second mother watching our babies during the day and we would talk about our family wants and needs while surrounded by them at night. Every couple is different and there is no right or wrong.

Watching friends struggle to conceive or suffer a loss has been difficult to say the very least. I will light my candle at 7 p.m. on October 15th to honor Pregnancy & Infant Loss Awareness Day for that reason. I am blessed not to have experienced that pain myself. However, I must say that the fear of those losses and the many women I have known endure them started a conversation one night soon after Kelsey was born.

Brendan and I decided to table the talk of a third child until after Kelsey’s first birthday. As it turned out, we spent most of December at DuPont Hospital just before her milestone birthday rolled around. The idea of a party was completely out of our minds. I could not have pulled off Kelsey’s first birthday without my mother’s help. She took over the details and even hosted the celebration. Though I was still full of concern and uncertainty, I had a lot to be grateful for that year, too. And so we celebrated thanks to my mom.

Reality set in regarding our family growth and how the uncertainty looming over us made it too difficult to consider bringing another child into the world. We sadly decided to close the door on expanding our family. It was a tough decision to make as a couple who adores children. Difficult as it was, we remained grateful for the two beautiful lives we had created. We are still grateful every day for those gifts.

Five years later, the idea of a dog came from my son. We have worried about him throughout this summer and how he would react to Kelsey’s Kaleidoscope. He is truly incredible and usually full of joy. But we never want to leave him out and often wonder what the past five years have done to him. Hopefully, it has changed him for the better and given him an appreciation of health and love. However, at only seven, it is realistic to think that there is a part of him that may resent all of our efforts purely because he can not understand them. In fact, we have done our best to withhold the truth from him because he is, in fact, just seven.

Whether it was that idea heavy on my mind or a feeling of incompleteness as a family, we came home with a Cockapoo. My little Star Wars fan named him Luke Skywalker. I look at Luke now, sleeping like a baby next to me. He is serene and tranquil under a blanket that both of my children were tucked under as babies. Kelsey actually gave it to him from her “baby doll” collection the night we brought him home.

Many equate puppies to babies, and though a puppy could never fill the void of another child that I sometimes feel, Luke certainly helps. He is a reminder of the struggles, joys, and early wake-up calls that babies tend to bring near.

They say that time heals all wounds. Licks from puppies go a long way in providing healthy distractions at times when we really need them, too. A quick game of fetch after a long day also helps the reality of life fade away for just a few brief moments.

Thanks for the distraction, the licks, and the love Luke. May the obedience be with you.

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