Posts

Allies of Love

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  While running errands a few weeks ago, I ran into an old acquaintance. We were catching up with the usual pleasantries. “How is your son? Does he have a steady girlfriend?” I replied, “No, but he and his boyfriend have been together for more than a year and a half.” With a horrified and shocked look, followed by a snarky reply, she inquired, “Well, how is that?” I gave a quizzical glare until she finished. On some level, my mind knew where her comment was going, “Having a gay son?”   After what I am sure was an equally, if not more, shocked look in my eyes, followed by an image in my mind, playing out like a seventies cartoon of a baseball hitting her upside the head. I replied with, “I don’t know. What is it like having a heterosexual son?” My response left her speechless, and we soon parted ways.   Since that afternoon, I have not been able to shake the insensitive encounter from my thoughts. I am unsure if it was the underlying tone of her question that offended me. Perhaps it

Not too Rare to Care

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  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 which surrounds it. Though no two journeys are the same, I would like to share with you the necessity for SMAS awareness day. This is a glimpse into our journey - Jayde's journey. Since her diagnosis almost three years ago, Jayde-Rhiannon and I have cried a river of tears together, and separately. It was a diagnosis made sixteen years too late. I witnessed the light in her eyes extinguish when her doctor informed me, "She

Coming Out Day

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Yesterday was National Coming Out Day. I cannot fathom ever forgetting the day Brady came out to me. If for no other reason than the importance of the event to my son's life. He was on his way home and called me, "When I get home can we talk?" His voice was heavy with apprehension and fear.  When he arrived home, he requested we go to my bedroom to discuss what was on his mind. I knew then this was serious. I braced myself for the worst. "Mom, I am gay." Not hesitating, I breathed a sigh of relief, "Ok." His eyes widened. He was in utter shock, "What? That's it?" "Yes. You are still the same sweet boy I gave birth to nineteen years ago. I loved you then, and I will love you until the day I die and even afterward. This does not change anything." The worst never came. Brady had lifted his anchor. I could see and feel this heavy burden drift away and disappear like a boat out to sea. Though looking back at those last words, his com

We're Off To See the Wizard

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  The elevator speaks with the sweet voice of a child. The brightly colored art is familiar, like an old friend. While we walk in together, as we have countless times before, she voices, "I am nervous." "I completely understand. After your last experience several weeks ago, of course, you are." She expresses her anxiousness again as the nurse asks questions and takes her vitals. I assure her, "Momma Bear is here. We've got this." Sadly, this was once the only place, other than home, where she felt comfortable...at ease. The place where people did not stare, question, or judge. A place where she knew she could be among her own kind. This morning, while getting dressed, the phrase, "We are off to see the Wizard," was streaming through my mind. Go ahead, try reading that again without singing it. We have always thought of Jayde's cardiologist as the wizard of her medical journey. He has opened doors we never could have as a parent and patien

Sometimes Mamma Bear Needs to Make an Appearance

  This morning Jayde-Rhiannon and I spent an hour and a half with her primary care physician. During a phone call with my mom on Tuesday night, she inquired about Jayde's upcoming visit. I told her, "If you hear an explosion coming from the Cracker Barrel area of town, no worries, it is just your daughter." She laughed but wholly understood. Thankfully there was no big explosion, just two much-needed mini outbursts - one from Jayde, the other from me. After Jayde informed her doctor, she did not feel she was receiving proper care. I went into great detail regarding the mismanagement of her health from almost all physicians involved. I finished with, "I am watching my daughter wither away right before my eyes. Either you will be the doctor who figures this out while helping her heal, or we will find a doctor who will. If this is out of your scope of expertise or you are too booked to take time to focus on Jayde thoroughly, please speak up so we can find someone who

In A Perfect World, There Would be More Answers and Less Questions

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  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. In life, 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 circumstance in perspective. Regardless, we are secure in knowing 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 three to four mon

The Patient is Understandably Impatient

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  *Update from the 10th floor* From the windows of the 10 th  floor, I watch from above as the world continues to turn. People living their lives, I continue wishing against all odds my daughter was one of those people. How do you help someone who is losing the desire to help themselves? How do you force someone to continue to fight when they have fought so hard, for so long, that the fight is all they can now remember. In healthcare, there can be no shortcuts. It is a long exhausting road. Today this is where we are. A hospital is the last place any parent wants to be with their child. I want to see my daughter dressed like a princess, going off to her senior prom. I want to see her driving off while experiencing butterflies because she is finally driving. I want to watch her walk across a stage and be handed her diploma. Covid did not postpone these events in her life. POTS, EDS, and SMAS, have stolen these milestones from her past, her present and threaten the shreds of hope