Showing posts from 2018

When Giving Up Is Not An Option

There they are, the words I am not supposed to utter. Nonetheless, the unspeakable phrase comes rushing out of my mouth. Fortunately, my daughter and I are at opposite ends of the house, she is safely out of earshot when I screech, “I GIVE UP!” I am unable to re-cork my explosion of words. Instantly regretting my emotionally charged outburst, as it becomes a cloud of guilt cascading over me like a waterfall. Though it can be daunting, caring for a chronically ill child requires you to keep your wits and maintain composure whenever possible. You learn to master the art of squashing, the varying emotions, deep below the surface. Even when it feels almost impossible, somehow you learn to figure it out and it becomes your new norm. I walk out onto our deck, allowing the necessary tears to fall, collecting myself before I re-enter our home.

A few days prior to my outburst I sat in our living room, with my phone on speaker, discussing the latest test results with my daughter's cardiologi…

Hopes, Wishes and Prayers...Oh My

I sit in my living room with the curtains pulled open, fixated on the burnt orange glow across the horizon as it muddles with the bright blue of the morning sky. Having endured many late nights and all-nighters lately…the last six months I can count on one hand how many times I have been awake to see the vivid colors of a sunrise or hear the little corner of our world come to life. Most mornings as Chris kisses me goodbye before he begins his day, I am barely comatose as I utter, "I love you, " audible in a way only he can understand. We are naturally night owls...however, Jayde’s POTS has taken that character trait to an entirely new level. 
As my pillow and plush weighted blanket lull me to sleep, in the early morning hours, I clung to the last remaining shreds of denial and hope. Hopeful Jayde's test will show she was fine, healthy, not in need of major life-altering surgery. The combination of the morning noises of the coffee maker, Chris in the shower and our fur-bab…

The Art of Perseverance

Perseverance is not merely a word used to define an action…it is a state of mind, a state of being.
Roughly ten days ago Jayde attended a concert with Brady and her boyfriend Brett. We purchased the tickets in November, they were $13; we were not too worried 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. Her excitement was palpable. So was her stress, 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, keeping me abreast of Jayde’s wellbeing. My biggest fear was having to retrieve the kids early and the disappointment Jayde would feel. When I w…

Don’t Stop Believing...Everyone Has Their Own Path...

It is Monday, the weekend has quickly come and gone. Normally I would be dreading Monday and the routine of the week: Chris is awake at 5 A.M., out the door by 6 A.M.; Jayde is up at 6 A.M., out the door and on the bus at 7:05. There have not been too many cases of the Monday blues for quite a while, today is Jayde’s thirteenth consecutive missed school day. Since January 29th, she has been able to attend five days of school. Most of her days are spent in bed. If she is not in bed, she is on the sofa and the blackout curtains in the living room are pulled shut. Friday we were able to watch Grease and an old, One Direction movie. She smiles and sings along; occasionally, I hear her laughter. It is beautiful. The movie reminds me of a time when life was simple. A time when a boy band and the sight of Louie Tomlinson or Harry Styles made her squeal in delight. Do not even get me started about the time they came to M&T Stadium and she saw Louie backstage. What I would not give to go ba…

The Roar of a Lion

This morning, while tears streamed down my cheeks, I sat in my living room in awe. Though it was a bittersweet moment, it was a moment filled with sweet justice. Today a lion roared, excuse me lioness, and she roared loudly. I was watching the sentencing of, Larry Nassar; no Dr. in front of his name any longer, as he has been rightfully stripped of his title. While Judge Rosemarie Aquilina did not set out to be a hero, today she, along with every victim of Larry Nassar are my heroes. These women knew they were facing a demon bigger than just one little man, still, they bravely came forth and brought his darkness into the light. 

This depraved, vile man was sentenced to 60 years in federal prison for child pornography, with an additional 175 years from Judge Aquilina. It is a far cry from a six-month sentence, with parole in three months. Her sentence was bold; it is an assurance any light of day he ever sees, will only be from behind bars. 
As I read over the posts from various media ou…

The Gift of Time

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 given to us, comprehending the gift we have been given.

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, then shortly thereafter four, has now 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 also gives us the gift of time. A bittersweet gift...noneth…