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...

  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." Having been raised to believe that fitting in was necessary, I wanted the opposite for my children. I wanted them to understand it was all right to be who they were, never fearing to say what they felt. This would come back to bite me many times as their personali...