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Showing posts from 2019

California Dreaming

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  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 "wish child." 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. Her hand is tightly planted in mine; for a few moments, her anxiety gets the best of her. I lean over my beautiful girl to look out the window at the clouds below us; she lets out a giggle. All is well.

One Final Goodbye

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  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 we

Learning to Let Go

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 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 being 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 for her as well. Last weekend she slept over at a friend's house. 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 missed.  A few weeks a

First Do No Harm

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 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, which 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. 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 misdiagnosis. We have moved bey

Circle of Life

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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.

When the Unexpected Happens

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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, 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 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 anxious all day. While I was on

Port Surgery Day

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  Today is port surgery day, and right on schedule, all of 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 arrive at Hopkins, a few minutes late. Chris realizes he forgot his wallet, which means 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 we were last 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 is required several times, giving everyone authorization to treat our Baby Girl. 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 su