Serendipitous Girl

  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...

There is no rhyme or reason. It is 4 A.M, and I sit on the floor beside her, rubbing her back. Except for just being 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 lies 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...

Twenty-four hours in a day, seven days in a week, 8,760 hours in a year. It has been a little more than two months since this battle, for time, took on a life of its very own. Time is no respecter of persons. Simply put, it is a precious gift. A gift we take for granted in the routine of life, almost assuming we have an unlimited supply. For all our hopes and wishes, we cannot pause time, nor stop it. We can only cherish the moments allotted to us, comprehending the gift we have been bestowed. November 18, her birthday, another milestone; 84 years young or 735,840 hours of living. Dinner at her favorite restaurant, surrounded by the love of her family. What began in 1950 as a simple family of three, two years later became a family of four. Now we have grown into a family of eighteen. Small by some comparisons, still it is ours–mine. The few who are aware of the truth know this will most likely be her last birthday celebration. The gift of knowledge a...