Your average mom, with one child out the door and a teenager not far behind. Raising my children in this crazy world and at the end of the day hoping I do not screw up too terribly. Life has taught me to hope for the best, plan for the worst and always look for the silver-lining in every cloud. When I am not writing or doting on my children, you can find me hand in hand with my best friend, husband and partner of twenty-two years.
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Jayde's DDJ Surgery Day
Four months ago I walked past the room my husband, Chris, and I now sit in. To observe the parents that day, nearly broke my heart...imagining what they must be feeling and experiencing. With very little sleep and nowhere to go, many thoughts begin running through my mind.
This entire morning has been drenched in an air of surrealism. We observed the amber glow of the sunrise, casting its shadow over the streets of Baltimore. Somehow the dawn briefly gives everything a refreshed appearance, even in the smog and grime of the city.
Jayde is now over halfway through her surgery. Her nerves were in full force, fortunately, a cocktail in her IV relaxed her and provided for a few much needed pre-op laughs.
The room which is our respite is bright, yet somber, full of families with anxious and heavy hearts. It is a United Nations of sort, with people from all walks of life, originating from the many corners of the globe, speaking many different languages. The breath from this room comes from the sounds of children laughing and playing. Despite the many differences, it is obvious each person is here for the exact reason: because they are dearly fighting for someone they love. It is a fight, filled with countless doctor’s appointments, painstakingly destroying brick walls to reach the next medical hurdle, and immeasurable exhaustion from the many nights of no rest...even when you close your eyes. It is not a pretty fight...then again, most aren't. Yet I believe every parent, grandparent, and caregiver in this room would go to battle countless times if it meant the mere possibility of the child they love being well. I have stated before, this is the place where parents and patients come after they have exhausted all resources. Chris and I are the fortunate ones, we live less than
an hour away...John's Hopkins was not the last resort, it was an option.
One of the many lessons I have learned from this journey is: too many take their health for granted...until they can't.
If you can bike or hike along a picturesque trail, walk along the shoreline during a sunny day, or simply jog through your neighborhood...please know and understand how blessed you are and never take it for granted. For many, these simple feats are wishes which will never be granted. #jrsjourney#POTS#DYSAUTONOMIA#SMASYNDROME#zebra #johnshopkinschildrenshospital
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 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. 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 disappoin
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 car
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 v