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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 standstill. The following 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.

Though She Be Little She Is Fierce

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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 of 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. I am thankful for this brilliant doctor who did not dismiss my mother's intuition or Jayde – as too many did 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 f

When Did Test Scores Become More Important Than A Child's Wellbeing

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I was feeling an abundance of frustration this morning.  Jayde has missed a great deal of school during her educational career. However, her absences have ALWAYS been supported by doctor's letters. Still, with all these absences, she has managed to maintain her grades. I swore I would never do this, but after today, I am ready to yank Jayde-Rhiannon out of SYCSD and homeschool her until graduation. Apparently, a letter from Johns Hopkins Hospital was insufficient to explain why Jayde is not starting school yet. Simply because it was signed by her nurse. Even though that is what Jayde's surgeon instructed us to do, and even though this is more than five formal letters from Jayde's medical team informing of her medical condition in less than a year. Maybe I should attach pictures of her hooked up to all her tubes and equipment with the latest letter. Out of the mouth of my babe this afternoon, "I don't know why you bother to try and educate them about my illnesses. T

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 kind 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 on my phone 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 sitt

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 uncontrollably. 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, it is a different story when she moves. Still, she is trying to smile through all of this the best she can. The next several days will be an adjustment per

Gratitude From the 10th Floor

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This morning, I awoke with a heavy heart, thinking about everything I had 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 our silent conversations 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 additional ten minutes to prepare something. It is truly the little things that mean th

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 showering, having her hair washed, and her legs shaved by Nurse Mom. She looked 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 patient challenge was chicken broth with a side of jello. While I was still in the haze of sleep, her nurses whispered about removing her from IV fluids . 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 Roa d. She is not too thrilled with the Jello For today we are gr

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 in her recovery. 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 mama 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 lapse 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 inserted too far. Thus, it was not drainin

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 and crawl back into her bed. The medicine is keeping her pain away and a smile on her face. Yesterday, Jayde had many visitors. We got her steps in by taking her guests on a walk to the kid's room. Though she has mastered that smile, no matter how she is feeling, it was obvious once everyone departed, she was exhausted and hurting.  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. Also, per her request, her belly button is still an "innie." Today, she is more alert but on edge. She used the bathroom by h

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 run through my mind. Leaving Jayde in the OR is something nothing could prepare me for. 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 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 sorts, with people from all walks of life, originating from many corners of the glo

Always read the fine print

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Yesterday was the usual…a doctor’s appointment (this time for me, woohoo!), dinner out with my Baby Girl, then a little shopping. Jayde-Rhiannon wanted to take her bargain shopping queen of a mamma into Marshalls. After two hours and a basket full of treasures…we were done. No, I am not going to divulge the total…Chris has still not seen the receipt, but every item was necessary, and we saved a lot of money. Of course, during our shopping escapade, we could not forget our furbabies. Jayde and I were so excited to find a cute little scratching post for our feline zoo. Because seven-foot tower in our living room, the corner of our custom-made sofa, and a few door frames are not merely sufficient to sharpen the tiny little daggers on their feet. Every day with the Jackson Pride is an adventure. For the most part, all “six” of them are cute fluffy extensions of our family, and we spoil them whenever we can. Every cat was enthralled with the new toy. After witnessing their enthusiasm, I tol

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 heavily on my phone's calendar. (Yes, I was a Blackberry addict in the early days.) Although lately, it would be impossible for me to tell you the day of the week without my phone's 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. I am silently praying when I wake up, this ache in the pit of my stomach, and the accompanying heaviness that begins fro

An Anniversary to Remember

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Recently, the three of us have been traveling back and forth to Johns Hopkins Hospital to work with some exceptional doctors, hoping they will help our Baby Girl. We were overjoyed when we thought they had found another piece to Jayde-Rhiannon's POTS puzzle. Instead of a helpful puzzle piece, her doctors found two other non-related medical issues that require immediate attention. The first is Superior mesenteric artery syndrome (SMAS). The second is Nutcracker Syndrome, which is a renal vein compression between her aorta and her abdomen. It is believed Jayde was born with these medical issues, and despite all my pushing (and you know I can push), her doctors refused to look outside the box. The incredible miracle is that she has survived sixteen years without worse issues, and if you know what she has been existing with, then you know her journey has not been easy.  The SMA syndrome is causing severe abdominal pain, nausea, and vomiting...along with several other symptoms. When she

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, over 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 coherent 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 lulled 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 okay, healthy, not in need of major life-altering surgery. The combination of the morning noises of the coffee maker, Chris in the show

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 pho