Though She Be Little She Is Fierce

We have traveled full circle, bringing the three of us back to where our journey began five short months ago. Coming to Hopkins has become a family affair for me, Chris, and Jayde-Rhiannon. As I observe Jayde carry herself through the hospital, I marvel at the beautiful creature I call my daughter. I'm sure I am biased, but I have never met a woman as strong as my Baby Girl. I am proud to be the Mother of such a fierce little warrior. On this momentous day, it is difficult not to feel many emotions. Yet, the strongest emotion pulsing through me at this moment is gratitude. Grateful Jayde has seen significant improvement. I am thankful for this brilliant doctor who did not dismiss my mother's intuition or Jayde–as too many did in the past. Today she was given the thumbs up from her doctor to test her new stomach created by the DDJ surgery performed not quite one month ago. One of Jayde's favorite forbidden foods is burgers, not the McDonald's or Burger King burgers. She wants the real deal. Her favorite burger is her father's hand-patted, juicy, on the grill 1/4 pounder. Since she was craving a burger and could not wait for the hour-long drive home, we celebrated by going to the Shake Shack. Witnessing her scarf down not one but almost two burgers brought tears to my eyes. This is a day I was uncertain I would ever see happen.

#jrsjourney #SMAS #NCS #POTS #FIERCE





Comments

Post a Comment

Popular posts from this blog

Rare Disease Day 2024

Image
  It's funny how ten people can hear the lyrics to the same song and interpret the words ten different ways. The first time I heard "Footprints on the Moon," I sobbed. The only person or thing I could envision was Jayde and her journey. I look at these pictures and am abundantly thankful for how far she has come. Still, I carry a hope that the brilliant doctors will soon discover the genetic links necessary to crack the elusive code, changing the face of medicine and our lives. I understand how fortunate Jayde is to have been placed with Johns Hopkins Children's Center. My immense gratitude for the few doctors who made it possible to still see those bright green eyes every day never wanes. To the average person, Rare Disease Day is just another day, yet to our family and many like us, it is 365 or, in this year's case, 366 days a year. There was a time when I heard the word rare, and my mind immediately thought of something beautiful, special, and unique. Anytime ...
Read more

Pride in Disabilities

Image
  July is Disability Pride Month, commemorating the Americans with Disabilities Act (ADA) that was signed into law on July 26, 1990. Until a decade ago, I took this law for granted. Sure, I had heard of it, but I was unfamiliar with its content. Inclusivity and accessibility are something most healthy individuals take for granted until they break a leg or need surgery. Then, the doors to a world of accommodations you pass by daily without consideration open. Our children are born, and we imagine what their lives will be like. Who will they become? What kind of hobbies will they enjoy? What types of friends will they have? What profession will they gravitate towards? You envision the places they will go, the things they will see and do along life's journey. In the end, none of it matters, only their health and happiness. Except what happens when health is not a part of life's plan? You begin to grieve the dreams you once had. Then you grieve for the dreams your child held dear t...
Read more

SMAS Day 2024

Image
Today is purple day in the Jackson household, but not because the Ravens are playing. Today is SMAS Awareness Day. Each year, I try to give a glimpse into Jayde's journey with this disease. Superior Mesenteric Artery Syndrome. What can I tell you that you haven't already heard? SMAS is so much more than nausea, pain, vomiting, and weight loss. This disease is relentless, it's frustrating, and it is heartbreaking. That is on a good day, and I am only the mother and caregiver. Yes, those are two very different roles, and I will be the first to admit that on the bad days, I find it challenging to figure out where one begins and the other ends.  About a week ago, I told a dear friend, "If I don’t answer when you call, it's because I am having trouble getting my arm out of the straight jacket."  The culprit of my most recent spiral into madness—Jayde's port. Along with her many illnesses, Jayde has Factor V Leiden Mutation. This is a genetic mutation that cause...
Read more