Showing posts from 2020

Coming Out Day

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

  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 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

  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

  *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

Some Things in Life You Cannot Prepare For

*Update from the 10th floor* Covid has eerily slowed the pace, yet the smells, the sights, the sounds, the walls - they are all too familiar. The body remembers what the mind attempts to bury. The memories prompt an unnerving yet comforting feeling. I know she will receive the best possible care in this building, though, after years of fighting an apathetic medical system, my guard is unwavering. Early in the day, on Saturday, Chris, Jayde-Rhiannon, and I were having an emotional conversation. Jayde has not been doing well since last October. Every bit of weight she gained after her surgery, from two years ago, and then some is now gone. Her heart rate, which was once stabilized by her medication, bounces from 55 to 185. The once tolerable pain she encounters every day has become unmanageable. Now weighing 88 pounds and feeling quite 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

The Silver Lining of Not Giving Up

  Yesterday was Jayde's first in-home IV therapy. Arriving at this day was not without its share of roadblocks, frustration, and chaos. I think what infuriated me the most was, 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 health

She is My Miracle!

  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 the color purple would become so symbolic. It has been a challenging year in the SMAS community, as too many warriors have succumbed 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 having a candid discussion with my mother on the graveness of Jayde’s health. 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 condition 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 a

Denying the Obvious

  This photo was us yesterday afternoon, before Jayde's doctor's appointment. We have been trying to steal every happy moment possible, even though they have become few and far between. With each new episode, I mark my calendar, all the while 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 she 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 cha

Yesterday Was a Good Day

  There is no rhyme or reason. It is 4 A.M, and I sit on the floor beside her, rubbing her back. Except to just be here, I am helpless to make any real difference at the moment. I am the best friend who holds back her hair, except this is not from some stupid self-inflicted debauchery. This is her life. She has chosen to make her bed on the floor. I contemplate doing the same to be closer to her. The regular companions snuggle in around her. They are familiar with what the sounds mean. She is finally asleep in her bed. I check on her one last time. I pull the blankets up to my chin. It is now 7:20. Jayde's bathroom and trash can are once again clean - hopefully, for the final time. The laundry from the night's episode lays in the hallway; it can wait until later. Chris is peacefully asleep. I envy my sweet husband's ability to sleep/snore through anything. The episodes are becoming more frequent. The respite we enjoyed for a year seems like a distant memory. She has started