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Showing posts from 2018

Just Breathe

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Chris was on his way to deposit some checks into our bank, so I could book a house in Charleston for two glorious weeks. Afterward, he was picking up pizza for his little princess, and I was steaming shrimp for the two of us. Jayde-Rhiannon  and I were where Chris left us, lying across my bed talking. I was going to take a quick shower, Chris was going to come home, and the three of us were going to spend a quiet evening together. Not five minutes had passed since he kissed us goodbye and walked out the front door. My text alert sounded, "In an accident. Car totaled." Within an instant, with one text, everything halted to a stop. The next text gave his location. After that, he stopped responding and did not answer my phone call. I flew into my infamous crisis mode, autopilot. My body rapidly pulsing from head to toe, as if someone had injected me with a giant dose of adrenaline. I silently prayed, trying to stop all the thoughts that began racing through my mind. Jayde and I

Full Circle, But Better

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We have traveled full circle, bringing t he three of us back to where our journey began five short months ago. Coming to Hopkins has become a family affair for me, Chris, and Jayde-Rhiannon. As I observe Jayde carry herself through the hospital, I marvel at the beautiful creature I call my daughter. I have never met a woman as strong as my Baby Girl. I am proud to be the Mother to such a fierce little warrior. On this momentous day, i t is difficult not to feel many emotions. Yet the strongest emotion pulsing through me, at this moment, is gratitude. Grateful Jayde has seen significant improvement. Grateful for this amazing doctor who did not dismiss this mother's intuition, or Jayde, as so many have in the past. Today she was given the thumbs up from her doctor to test her new stomach created by the DDJ surgery performed not quite one month ago. One of Jayde's favorite forbidden foods is burgers, not the McDonald's or Burger King burgers; she likes the real deal. Her favor

The Tale of the Hangry Teenager

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This morning I awoke with thoughts of the last several days rolling through my mind. Jayde-Rhiannon 's final day in the hospital, my best friend asked me while visiting, “What do you do all day?” I responded, “Take care of Jayde, talk to doctors, fight with nurses who don’t listen, take care of Jayde, talk to doctors and take care of Jayde.” Sounds kinds of boring, right? Jayde and I spent seven days together, sleeping a few feet away from each other. We did not watch movies or TV, as we had planned. I turned on my laptop twice, for a total of one hour. I took several magazines and two books, they remained in the suitcase. I began the Facebook updates because it was easier to make one post than answer twenty or so texts and phone calls. The posts also freed up more time to concentrate on Jayde. When she finally regained her voice, we talked a lot. The silver lining of the entire experience…because I always need to find one…was the quality time with Jayde. If we were sitting on a be

Update From Plank Road

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Chris leaned over and took my hand, "It feels good to finally make this trip with you by my side." The bottled emotions I had previously been unable to name washed over me as we turned onto Plank Road last night. They proceeded to stream down my cheeks in an uncontrollable fashion. We were greeted at the door by most of the Jackson pride, who were anxiously awaiting the return of Momma and Baby Doolittle. Mommom, Poppop, and Grandmom turned Jayde's homecoming into the celebration it should be. It was not long before Jayde requested a smoothie, and I put the Ninja blender to work. Apprehensive is how I would best describe Jayde right now. Her hospital room was designed for her and her needs. Her bed at home does not have rails and buttons to raise it up and down for her ease and comfort. Laying still, she is in minimal pain; however, when she moves, it is a different story. Still, she is trying to smile through all of this the best she can. The next several days will be an

Gratitude From the 10th Floor

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This morning I awoke with a heavy heart, thinking about everything I have witnessed in the past seven days. There are twenty beds in our unit. Every story is different. Yet I can plainly distinguish one common thread, which runs through each of these stories I have come to understand during our stay at Hopkins...immeasurable love for a child. I am grateful for the warm camaraderie amongst the parents in our little corner of the hospital. Our smiles are the silent conversations we engage in as we pass each other in the halls. A comforting hug has made all the difference in the world...especially when you are on the verge of tears or see another mother desperately trying to hold herself together. A listening heart comprehending the anguish can only be unburdened when our children are out of earshot. Leaving extra food in the kitchen and placing another parent's name on it...because you know they have not had an extra ten minutes to prepare something. It is truly the little things tha

Light from the 10th Floor

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A new day brings many changes...for the better. Jayde has hurdled her obstacles with great strength. Yesterday she slept almost all day...last night, she turned a corner, gaining momentum and not looking back. Her Ng tube was removed around 5 p.m., allowing her some much-needed freedom and relief. She celebrated by having her hair washed, showered, and legs shaved by nurse mom. She looks like herself again, and for the first time in three days, Chris and I heard the amazing sound of her voice once more. It is squeaky and weak but still beautiful. This morning's challenge...chicken broth, with a side of jello. From her nurses, whispers of removing her from IV fluids were overheard in the haze of sleep. Once Jayde can tolerate liquids, she will be restricted to a soft diet for several weeks. How she tolerates liquids, followed by soft food, will determine when we graduate from the 10th floor to Plank Road. For today we are grateful to have the past five days in the rearview mirror, l

More Updates from the 10th Floor

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I sit in the peace of the dreary morning as the sun rises over the city, casting my gaze towards the sight of the open water and bridge. This site has quickly become my mental escape from the 10th floor. If I look straight out, my view is the city for as far as the eyes can see. However, if I snuggle comfortably into the corner of my sofa, I see a vision of tranquility and boats setting out to sea. The only sounds in the background are the hum of Jayde-Rhiannon's medical equipment. I silently pray for a better day, one which is filled with peace. Knowing in my heart, my Baby Girl needs a respite from the disappointing news and lackluster care of yesterday. Jayde is soundly asleep. The past few hours have probably been the best rest she has experienced in almost a week. I slink back down and comfortably become one with my pillow and my plush blanket. When I awake again, it is almost 8:30. Jayde's new nursing team, Tina and Taylor, are introducing themselves to me. Today she has

Update From the 10th Floor

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Today Jayde experienced some setbacks, along with a few speed bumps on her recovery road. Yes, they are to be expected. Still, it does not make these setbacks any less frustrating for the girl lying in the hospital bed or the momma who cannot do much to change it. The day started with a new nurse who knew nothing about SMAS and very little about POTS. "Umm, no, 73 is not a normal HR for her, even when she is resting. Please check again." "115, ok, that sounds accurate." After Nikki and Shannon knew what we needed, without us saying a word, never allowing Jayde's medication to overlap, or making Jayde feel she was a less important patient-it was a day full of adjustments. Jayde's fluoroscopy test was an adventure. She experienced a resident who was not confident in her skills, along with a callous doctor who needed to have a refresher in empathy and bedside manners. Besides the obvious, to see if her surgery was successful...we discovered the Ng tube was inse

Updates From the 10th Floor

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Each day is full of milestones in Jayde's recovery, filled with moments where I am more amazed by our Baby Girl and her determination. Yesterday was all about getting out of bed, taking short walks, and moving her tiny hiney. Jayde's gait as she walks down the hall is slow and steady, like a tortoise. Returning, she is always an eager bunny, anxious to get back to her room. The medicine is keeping her pain at way and a smile on her face. She had many visitors yesterday. We took a walk to the kid's room. Today has been quiet. The three of us slept until 9:30. Her incisions look beautiful. A year from now, it will be difficult to detect a scar...and per her request, her belly button is still an "innie." Today she is more alert but edgy. She used the bathroom by herself, bye-bye bedpan...huge progress there! The tube in her nose is rapidly draining her stomach, which is good. However, it is quite noisy at times, and she has been extremely nauseous. She has very littl

Jayde's DDJ Surgery Day

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Four months ago, I walked past the room my husband, Chris, and I now sit in. Observing the parents that day, imagining what they must be feeling and experiencing, nearly broke my heart. With very little sleep and nowhere to go, many thoughts begin running through my mind. This entire morning has been drenched in an air of surrealism. We observed the amber glow of the sunrise, casting its shadow over the streets of Baltimore. Somehow, the dawn briefly gives everything a refreshed appearance, even in a city enveloped in smog and grime. Jayde is now over halfway through her surgery. Her anxiety was in full force. Fortunately, a cocktail in her IV relaxed her nerves and provided for a few much-needed pre-op laughs. The room which is our respite is bright yet somber, full of families with understandably anxious and heavy hearts. It is a United Nations of sort, with people from all walks of life, originating from the many corners of the globe, speaking many different languages. The breath fr

When Giving Up Is Not An Option

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There they are, the words I am not supposed to utter. Nonetheless, the unspeakable phrase comes rushing out of my mouth, much like a dam that has broken. The peacefulness of acceptance is waning today. Fortunately, my daughter and I are at opposite ends of the house, she is safely out of earshot when I screech, “I GIVE UP!” I am unable to re-cork my explosion of  words. Instantly regretting my emotionally charged outburst, as it becomes a cloud of guilt cascading over me like a waterfall. Though it can be daunting, caring for a chronically ill child requires you to keep your wits and maintain composure whenever possible. You learn to master the art of squashing, the varying emotions, deep below the surface. Even when it feels almost impossible, somehow you learn to figure it out and it becomes your new norm. I walk out onto our deck, allowing the necessary tears to fall, collecting myself before I re-enter our home. A  few days before my outburst I sat in our living room, with my ph

Acceptance is a Peaceful State of Mind

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I am lying in bed trying to wake up. I grab my phone and browse over my calendar. The last few months have been a whirlwind...I have always relied on my calendar...though lately, I could not tell you the day without its assistance. I am submerged in a deep haze. Our schedule for the next ten days is overwhelming. What was I thinking of scheduling two major doctor’s appointments on the same day?!? The simple answer, I wasn't. To the Super Moms who do it all, are beautifully put together, your homes are clean, and dinner is on the table at 6 P.M. every day...I applaud you. I also wonder when you sleep and if you are actually human. My feet hit the floor, yet all I want to do is crawl back in my bed, pull the covers over my head, and sleep away the grief...praying when I wake up, this ache in the pit of my stomach, and the accompanying heaviness that begins from the top of my head down to my toes will have magically disappeared. I have said it before, when someone you love dies, life

Hopes, Wishes and Prayers...Oh My

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I sit in my living room with the curtains pulled open, fixated on the burnt orange glow across the horizon as it muddles with the bright blue of the morning sky. Having endured many late nights and all-nighters lately…the last six months I can count on one hand how many times I have been awake to see the vivid colors of a sunrise or hear the little corner of our world come to life. Most mornings as Chris kisses me goodbye before he begins his day, I am barely comatose as I utter, "I love you, " audible in a way only he can understand. We are naturally night owls...however, Jayde’s POTS has taken that character trait to an entirely new level.  As my pillow and plush weighted blanket lull me to sleep, in the early morning hours, I clung to the last remaining shreds of denial and hope. Hopeful Jayde's test will show she was fine, healthy, not in need of major life-altering surgery. The combination of the morning noises of the coffee maker, Chris in the shower, and

A Sliver of Hope

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There is a reason we cannot see our own future. If we had known the path this day would lead us down, there is no way we could remain calm. As we walk across the bridge, which connects the parking garage with the hospital, it is obvious the building we are entering is its own little universe. Thankfully, we have only been here once prior, but that was many years ago. We were visitors then, today our purpose is quite different. The exterior stained-glass windows are beautiful, artistic even. Their panes filter the sun entering the building, casting a warm glow. I observe beautiful children, bravely smiling. They are surrounded by nurses and parents helping them walk, while numerous tubes and IVs are attached to their frail bodies. The sound of children laughing, merely being children, fills a long corridor that ends with an arcade. Walking to our destination, I observe parents in the family suite, talking with doctors fresh out of surgery. It does not take much observation to notice the

The Art of Perseverance

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Perseverance is not merely a word used to define an action…it is a state of mind, a state of being.  Roughly ten days ago Jayde attended a concert with her brother, Brady, and her boyfriend Brett. We purchased the tickets in November; they were $13. We were not too concerned if she was unable to attend. Yet to Jayde, this concert was everything. She had been messaging with the band’s photographer. He had placed her on the guest list and was giving her a press pass to take photos. Her excitement was palpable. So was her stress, the week leading up to the concert. She was worried her POTS would make it impossible for her to attend the show…her fears were not unfounded. We dropped the trio at the venue’s door, then proceeded to dinner and a movie close by. A nice respite, even if it was short. Brady was a protective big brother, texting me throughout the evening, keeping me abreast of Jayde’s wellbeing. My biggest fear was having to retrieve the kids early and the disappoint

Don’t Stop Believing...Everyone Has Their Own Path...

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It is Monday. The weekend has quickly come and gone. Normally I would be dreading Monday and the routine of the week: Chris is awake at 5 A.M., out the door by 6 A.M., Jayde is up at 6 A.M., out the door, and on the bus at 7:05. There have not been too many cases of the Monday blues for quite a while. Today is Jayde’s thirteenth consecutive missed school day. Since January 29 th , she has been able to attend five days of school. Most of her days are spent in bed. If she is not in bed, she is on the sofa, and the blackout curtains in the living room are pulled shut. Friday, we were able to watch Grease and an old, One Direction movie. She smiles and sings along; occasionally, I hear her laughter. It is beautiful. The movie reminds me of a time when life was simple. A time when a boy band and the sight of Louie Tomlinson or Harry Styles made her squeal in delight. Do not even get me started about when they came to M&T Stadium, and she saw Louie backstage. What I would not