Serendipitous Girl

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. Per...

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...

  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 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 by almost all the 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 willing ...

  *Update from the 10th floor* From the windows of the 10 th  floor, I watch from above as the world continues to turn. People are living their lives, and I continue wishing that, 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, feeling 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 and her present and...

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...

 Yesterday was Jayde's first in-home IV therapy. Arriving to this day was not without its share of roadblocks, frustration, and chaos. I think what infuriated me the most was that our insurance covers 100% of everything. We have very minimal copays and exceptional prescription coverage. Yes, I know how fortunate we are. Since Jayde became ill, I am grateful every single day for Chris taking a job that we were not sure he should take. Yet, with 100% coverage, I still had to spar with several individuals, including the president of the Wellspan VNA. Our medical supplies person told me yesterday, "You are one badass lady." I laughed and replied, "I make no apologies for being a Momma Bear." What he said next left me saddened, "Yeah, but most parents would have just given up." My following response will clarify the sadness, "I can't give up because that would mean giving up on her, and that is not an option." A few days ago, I discussed healt...

  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...

 Age brings wisdom, and with this wisdom, I have learned, "The pen is mightier than the sword." It is also much more cathartic. Unless the day falls on a holiday or special event, we have made Thursday Jayde's therapy day. It has been the one weapon in her arsenal of treatment that helps her survive week to week. Two weeks ago, we endured a rather unpleasant experience during Jayde's IV therapy session. The three of us departed the hospital feeling angry, frustrated, and with an overwhelming sense of concern. These are never good emotions when receiving healthcare. I decided to send the following letter to the hospital's care team. Upon returning last week, Jayde was treated like the princess Chris and I consider her to be. I can only hope this will continue in the future. "In the world of chronic illnesses, especially the invisible type, you become conditioned to doctors not listening or rather not hearing you. We are years past the random testing and misdia...

Perseverance is not merely a word used to define an action, it  is a state of mind, a form 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. She was using the pass to do a piece in her school newspaper. Her excitement was palpable. So was her stress in 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 and keeping me updated on Jayde’s well-...