Serendipitous Girl

Today is purple day in the Jackson household, but not because the Ravens are playing. Today is SMAS Awareness Day. Each year, I try to give a glimpse into Jayde's journey with this disease. Superior Mesenteric Artery Syndrome. What can I tell you that you haven't already heard? SMAS is so much more than nausea, pain, vomiting, and weight loss. This disease is relentless, it's frustrating, and it is heartbreaking. That is on a good day, and I am only the mother and caregiver. Yes, those are two very different roles, and I will be the first to admit that on the bad days, I find it challenging to figure out where one begins and the other ends.  About a week ago, I told a dear friend, "If I don’t answer when you call, it's because I am having trouble getting my arm out of the straight jacket."  The culprit of my most recent spiral into madness—Jayde's port. Along with her many illnesses, Jayde has Factor V Leiden Mutation. This is a genetic mutation that cause...

  Jayde-Rhiannon's first Christmas was memorable. She was two months old, and we had been in our new home for all of five weeks. There was still much unpacking to do, and I decorated the best I could. Since I was not up to traipsing through a field, there was a Charlie Brown Christmas tree in the corner of our living room. However, none of that mattered. On Christmas Eve, our home overflowed with people carrying the title of aunt, uncle, mommom, pop-pop, grandmom, grandpop, and cousin. Jayde was dressed in the sweetest green velvet dress, resembling a human baby doll as she was passed from relative to relative. After the past year, all seemed right in the world. In preparation for our joyous evening with our family, I timed Jayde's feeding so she would be good for the next four hours. The evening was perfect until it wasn't. Two hours into the festivities, Jayde threw up all over Chris. I didn't think her little body could hold so much fluid. She had never spit up befor...

There are images, moments, and emotions from the past several years that are indelibly etched into my mind and soul. They are forever a part of me, a part of her and her journey. I began documenting Jayde's journey with the hope it could help another family traveling our same path. My heart smiles, knowing we have.  Because this battle is relentless, I chose to chronicle her story...the good, the bad, the ugly, and all the moments in between. I use words and photos, so on the days she feels as though she can't go on, she will see just how far she has come and find the determination to continue pushing forward, when with every fiber of her being all she desires is to give up. January 28, is SMAS Awareness Day. Though no two journeys are the same, I would like to share the necessity for SMAS awareness day. This is a glimpse into our journey - Jayde's journey. Since her diagnosis almost four years ago, Jayde-Rhiannon and I have cried a river of tears together and separately. E...

  Superior Mesenteric Artery Syndrome, to the majority of the world these are merely four random words put together, having no significant meaning. To our family, these words are anything but random or meaningless. These words have taken us on a journey of discovery, fear, anxiety, relief, and sadness. Today is SMAS Awareness Day. It is the day where I wish I did not need to explain the purpose of wearing purple. It is the day when I wish the same wish as the other 364 days of the year - that no one else needlessly suffers from this disease and the ignorance that surrounds it.                                                Though no two journeys are the same, I would like to share with you the necessity of SMAS awareness day. This is a glimpse into Jayde's journey. Since her diagnosis almost three years ago, Jayde-Rhiannon and I have cried a river of tears togethe...

  I am beyond grateful to have my sister, mom, aunt, and mother-in-law's constant contact and their help behind the scenes, being my pillars, supporting me so that I can better support Jayde. It truly does take a village, and these women are my tribe. I know my post from last night was not easy to read. It was challenging to write and share. Yesterday was mentally and emotionally messy. Sometimes, you need to create more chaos to clean up the original mess. Jayde is still struggling to process everything happening inside her body right now, but she is mentally doing somewhat better. Witnessing lifeline helicopters flying in and out at all hours of the day and night helps keep her current circumstances in perspective. Regardless, we know she is where she needs to be to receive the best possible care. To help everyone following Jayde-Rhiannon's journey better understand how we arrived here, she has lost twenty-four pounds in the last several months. In hindsight, it probably st...

Another Update from the 10th floor Covid has eerily slowed the pace, yet the smells, sights, sounds, and walls are all too familiar. The body remembers what the mind attempts to bury. The memories prompt an unnerving yet comforting feeling. I believe Jayde will receive the best possible care in this building, though, after years of fighting an apathetic medical system, my guard is impenetrable. Early in the day on Saturday, Chris, Jayde-Rhiannon, and I were having an emotional conversation. Jayde has not been doing well since last Fall. Every bit of weight she gained after her SMAS surgery, and then some, is gone. Her heart rate, which was once stabilized by her medication, bounces from 55 to 185. The pain she encounters every day has become unmanageable, even with medication. Now weighing 88 pounds and feeling relatively weak, she relays she feels guilty that I still need to take care of her. I responded, "I am your mom. This is what I do. You have NOTHING to feel guilty abou...

  When Jayde was a baby, Chris thought pink was too basic a color for her. His favorite color to dress her in was a beautiful shade of lilac. Who knew then that the color purple would become so symbolic? It has been a challenging year in the SMAS community. We've seen too many warriors succumb to this disease. Each death is a stark reminder of the anguish this illness can inflict on its patients and their families. A few days ago, I was candidly discussing the severity of Jayde’s health with my mother. I explained my latest concerns over the two types of SMAS – acute and chronic. The long-term prognosis for acute SMAS is far better than that of the chronic type, which Jayde has. Acute SMAS is a sudden onset from a dramatic weight loss due to illness, surgery, or injury. This type generally responds better to conservative therapies or surgery and, in time, heals. Chronic SMAS is a long-term form, usually diagnosed once the symptoms are too severe to be ignored by doctors and sad...

  This photo was taken yesterday afternoon before Jayde's doctor's appointment.  As always, we have been trying to steal every happy moment possible, even though they have become few and far between. I mark my calendar with each new episode, wishing I could erase that particular day. Last night was Jayde's fifth SMAS episode in thirty-six days. Denying the obvious is no longer an option for any of us. The short-lived reprieve from her illness was a blessing and a curse. She is angry, frustrated, afraid, sad, and on the verge of giving up as she exclaims, "I don't want to live like this. This is not living!" She is right. She has experienced a brief taste of what her life should be like and desperately wants it back. I hold onto her as I hold back my tears, "It is understandable for you to feel hopeless, but know I will never give up on you. I will never give up hope." Next Friday, Jayde will have multiple scans performed to see what has changed. Th...

Today is port surgery day, and right on schedule, our nerves are on edge. Still, laughter rings through the air between the three of us. We depart on schedule. Unfortunately, traffic is a disaster in our sleepy little town. An accident on the interstate means 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, and they still have his credentials. The three of us sit in the family surgical room. Since our last visit here nine months ago, the only thing that has changed 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 diffic...

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...

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...

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...

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 fr...