Serendipitous Girl

This is the speech I was honored to present at last night's Make-a-Wish Cheers for Wishes Gala. I am not the most eloquent of speakers, but since I am a passionate writer, I decided to put pen to paper to help you envision how our family arrived here tonight. While I cannot convey to you what it feels like to be a wish child, I can tell you what it means to be a wish mom. Our family's story is one of hope—of losing hope and then finding it in the most unlikely of places. The word rare is defined as something unusually good or remarkable. Yet, when you combine the word rare with the word illness, you quickly find yourself adrift, desperately searching for answers. In our daughter's journey, we discovered many doctors were hesitant to admit they did not understand what was wrong with her. This behavior only compounded the frustration we experienced from not having answers. However, when your child is sick, that once pointless frustration transforms into sheer determina...

We are determined to enjoy every moment of our West Coast visit. Yesterday, we visited Disneyland and California Adventures. This morning our Fairy Godmomma inquired how Disneyland compared to Disneyworld. I am sorry to say—it doesn't. It was nice to visit and be able to say we did it, but it made me miss Disneyworld. Mickey and Minnie weren't even there, but we did get our Dole Whips! Chris laughed at me when I asked, "Where is Cinderella's castle?" His reply was, "She can't have the same house in two different states! If you had a house in Florida and one in California, would they be the same?" "Well, let me try that, and I will let you know!" Glad I have this witty man as my partner in all of life's adventures, always putting things in perspective for me. This morning, we all slept in and ordered breakfast in bed. The past few days have physically taken a toll on Jayde. Though she is fighting to make the most of this trip, she is exh...

Yesterday, Jayde's wish, through Make-a-Wish, was granted. Jayde is understandably exhausted, and her pain is, as she put it this morning's check-in, "An eight, from head to toe." Even in pain, she glows.  There were many moments where I was not sure this day would happen. T he only word I can think of to sum up the experience for our family is MAGICAL. Destiny, our LA Make-a-Wish rep, and James Nagel, an amazing LA-based photographer and cinematographer, met us at our hotel. We spent the next few hours strolling the Santa Monica Pier and the beach. Jayde is so shy in front of the camera, but behind it, she lights up. James was amazing. Besides being relatable and kind, patiently teaching Jayde and helping her hone her skills, he saw her. Having the opportunity to watch our beautiful daughter in her element was as much a gift for Chris and me as it was for Jayde. This morning, my heart is full of joy and gratitude. This East Coast girl was raised on Disney Florida, s...

The day I received the phone call informing me Jayde had been granted a wish through Make-a-Wish, I began to cry uncontrollably. No parent ever anticipates their child will become, at any point in their life, a "Make-a-Wish Kid." My tears were mingled with happiness, relief, and sadness. When you live in the medical trenches with your child, you distract yourself with dreams of beautiful, far-off places. Someplace where, for a brief moment, your child can escape the reality of their life. Though this is just a dream, that is alright because a dream is a wish your heart makes. Yesterday, we began our California Coast photography adventure, compliments of Make-a-Wish and Jayde's dream. This is Jayde's first flight. We are all a little anxious—yet filled with excitement. As her anxiety gets the best of her, she plants her hand tightly in mine. I lean over my beautiful girl to look out the window at the clouds below us—she lets out a giggle. All is well. For me, it had b...

  We are in the countdown to California mode. Only three more weeks to go. Yesterday was one of those busy days - appointments, errands, ect. At the end of the day, I felt accomplished but exhausted. By the time I parked the car in the driveway and unloaded everything, it was 9:30, and all I wanted to do was eat dinner and go to bed. Upon getting ready for bed, I noticed I had a missed call and voicemail from a local number. I almost put off listening to it until this morning. As the voicemail began to play, I realized it was our favorite nurse from the pediatric floor at York Hospital. What she said next moved me to tears, "I had to call you personally to let you know that because of people like you, an announcement was made that the IV team is returning. It is because of people like you who vehemently spoke out and wrote letters about the IV team being disbanded that a group was formed to look at the complaints. The hospital is bringing the team back in full force." I write...

  So much has transpired in the thirteen months since the gift of time ran out, and we buried my Mommom. Life has been busy, and in many ways, I am grateful because it forced me to keep moving. Each time I was still, it seemed to allow the grief to take a stronghold. Last year at her funeral, multiple family members and friends approached me, reiterating the same sentiment, "You were her Kellie." It was heartwarming to hear those words. For some time, it felt as if she was not truly gone. I guess it makes sense. She always lived less than an hour away. Except for the time I lived with her, then moved around the corner for a few years. But that all was a lifetime ago. Today, our family is waking up to a different world. The house, which was our family home for over sixty-five years, is officially someone else's residence as of four o'clock yesterday. 1407 Stengel Avenue. It was not much by today's standards, but her door was always open, and you always knew you w...

 As I observe my little sister, a combination of adoration and envy washes over me. After an evening of floating in our pool, my nephew is peacefully sleeping in her arms. You can sense his pleasant contentment without worry or concern. I glance at Jayde, fondly remembering those days. Recalling the moments when her only care in the world was driving her Barbie car around our back yard.  When our children are young, we hold onto them simply because we can. Letting go is a gradual process. I remember the ritual with Brady. Now, Jayde is on the verge of eighteen, I find it difficult to believe this is where we are in our journey with her. I realize baby steps are necessary at this juncture. Not just for me but also for her. Last weekend, she slept over at a friend's house. A milestone in many ways. Around 11:30, I received a text, "I miss you." When she arrived home Sunday afternoon, I received a hug, and an "I missed you" whispered in my ear. It felt good to be m...

 Age brings wisdom, and with this wisdom, I have learned, "The pen is mightier than the sword." It is also much more cathartic. Unless the day falls on a holiday or special event, we have made Thursday Jayde's therapy day. It has been the one weapon in her arsenal of treatment that helps her survive week to week. Two weeks ago, we endured a rather unpleasant experience during Jayde's IV therapy session. The three of us departed the hospital feeling angry, frustrated, and with an overwhelming sense of concern. These are never good emotions when receiving healthcare. I decided to send the following letter to the hospital's care team. Upon returning last week, Jayde was treated like the princess Chris and I consider her to be. I can only hope this will continue in the future. "In the world of chronic illnesses, especially the invisible type, you become conditioned to doctors not listening or rather not hearing you. We are years past the random testing and misdia...

Today marks one year since the gift of time ran out, and we lost my Mommom to cancer.  Not long ago, I was advised, "The first year after losing a loved one is the most difficult." With the loss of a loved one, life abruptly changes. It is categorized. Suddenly there is a before, and there is an after. Time becomes measured in weeks, months, and years. I assume it is accurate to an extent. There are first holidays and special occasions without the person we love. Yet, it is the little day-to-day moments missing from our life, which become the most significant reminders of the poignantly palpable void. Brady and I discussed a conversation between him and his boyfriend, Mario, about getting a pet. While Mario is an animal lover, his hesitation stems from growing attached and the pet passing. Brady's reply was simple, "It's the circle of life." I was telling Chris a few days ago, "I wish I could go back to a year ago, to immediately after my Mommom passed....

The Smile I live for Barely a year ago, we began traveling down a new path in Jayde's healthcare journey. Once a week, we check in at our local hospital's pediatric unit so that Jayde can receive IV therapy.  Throughout this journey, we have become accustomed to bracing for the impact. We were informed from the beginning that a port was a likelihood. As the weeks turned into months, the possibility became more of an inevitability. Upon her recent EDS diagnosis, as hesitant as we were to take the next step, we knew Jayde receiving a port was now necessary.  The days following her port surgery were emotional, especially for Jayde. Seeing the new incision, soon to be another scar, is a constant reminder of her poor health and her body's shortcomings. There was nothing I could do to console my Baby Girl except put my arms around her and allow her to feel the many emotions she needed to feel. Today was her first IV therapy since surgery. Time to test out her new port. She was an...

Today is port surgery day, and right on schedule, our nerves are on edge. Still, laughter rings through the air. We depart on schedule. Unfortunately, traffic is a disaster in our sleepy little town. An accident on the interstate, someone will not be arriving home today, putting everything in perspective. We arrived at Hopkins a few minutes late. Chris realizes he forgot his wallet, which means he has no driver's license for his ID badge. Thankfully, we have been here. We have done this routine before. The three of us sit in the family surgical room. Since our last visit here nine months ago, the only thing to change is the faces of the strangers surrounding us. We get settled into the pre-op area. Vitals are needed, and labs are completed. My signature, allowing everyone to treat our Baby Girl, has been signed several times. Jayde's nurses quickly discover why her surgery is necessary, as they have difficulty finding a vein for her IV. Twenty minutes later, they are successful...

When Jayde-Rhiannon was a baby, I often reminded Chris not to become too comfortable in her stages. Knowing as soon as we did, she would indeed move on to the next phase. Years later, I have forgotten my own advice. It is evident to me that I have become accustomed to her new normal. It is 3:45 a.m., and there is a brief lull; it deceives me into believing the worst is over. A year ago , I would have known better. I quickly reach for the Clorox spray and paper towels. By 4:05, her bathroom is clean. I am ready for bed. The sound of her in my bathroom makes it abundantly clear that I am out of practice. There was a time I could sense our all-nighters before they occurred. I do not miss that sixth sense. However, I miss my vibrant redhead, with her sparkling blue eyes, which did not contain a care in the world. She throws off her hoodie; her once chilled frame is now dripping. Her long hair is pulled back, cascading over her shoulders. She is curled up in front of the toilet. In the mid...

To understand the latest diagnosis, I need to go back a few years. This is an excerpt from December 12, 2015 It's been several years since Jayde was forced to give up taking dance classes. It was a difficult decision, but in the long run, the three of us knew it was for the best. As much as she enjoyed dancing and golfing, it was apparent her body was not a fan. So when she came to me and said she was trying out for the cheerleading squad, I was leery, but I certainly wasn't going to discourage her. The week before the tryouts, she began preparing herself by stretching, exercising, and keeping herself hydrated. The first night, she came home so excited. That spark in her eye and fire in her belly was reminiscent of her dancing days. I loved it. Day two was similar; she went on for almost thirty minutes about the session, but the embers were steadily fading, and she started a steady dose of Advil and Tylenol and requested an Epsom salt bath. On day three, she had a considerable ...

  It is ironic how one little word can have a variety of connotations. How one simple word can prompt your heart to sink or make it soar. Normal. What is normal? For years, we shunned normalcy. Normal is boring, be you, whatever you are. Why attempt to live your life fitting into a box society believes you should be in when you were born to stand beside it in all your glorious self. We adopted this mantra as we navigated raising an adolescent with mental illness. An adolescent who desired to be anything but himself. The mantra, which seemed to suit Jayde-Rhiannon, was from a favorite book, “My darling girl, when are you going to realize that being normal is not necessarily a virtue? It rather denotes a lack of courage." Being raised to believe fitting in was a necessity, I desired the opposite for my children. I wanted them to understand it was alright to be who they were, never fearing to say what they felt. This would come to bite me on many occasions as their personalities shi...

She is graciously composed. Inside, dying to scream at someone. Anyone. The entire world. Her misty eyes speak a thousand words. Words only I can hear. Though she is hesitant, she is learning to speak out, allowing her voice to empower her. When she cannot, I am her voice. I am her advocate. There is nothing I would not do to remove her pain and the torture of the many tiny needles. The nurses fully adopt the mantra, if at first you don't succeed try, try again. It's time to bring in the backup nurses. This is where I pointedly remind my seventeen-year-old, in front of the frustrated crew assembled before her, "This is YOUR body. Only you get to decide when you've had enough." Today, it only took three nurses to progress. This is why an IV team is necessary. It will not be long before clouds of blue and purple reach the surface of her translucent skin, another blunt reminder of her body's inadequacy. She stares out into nothing as the music plays on. For today...