A Sliver of Hope


As we walk across the bridge connecting the parking garage with the hospital, it is obvious that the building we are entering is its own little universe. Thankfully, we have only been here once before, but that was many years ago. We were visitors then; today, our purpose is quite different.

The exterior stained-glass windows are beautiful, artistic even. Their panes filter the sun entering the building, casting a warm glow. I observe beautiful children bravely smiling. They are surrounded by nurses and parents helping them walk while numerous tubes and IVs are attached to their frail bodies. The sound of children laughing, merely being children, fills a long corridor that ends with an arcade. Walking to our destination, I observe parents in the family suite, talking with doctors fresh out of surgery. It does not take much observation to notice their heads are heavy and their hearts are worn. I quietly pray their news is positive and that today brings them a ray of light and hope. After all, this is the place where parents bring their children when they are praying for the smallest sliver of hope - or when all hope has been exhausted.

A large display at the entrance proudly states Johns Hopkins Children's Hospital is ranked #5 in the country. I already know Hopkins has one of the best children's hospitals in the country, but I could not help but wonder what difference the top four hospitals would make in the lives of the children I observed.

Over the last few years, our medical journey has taken us places I never imagined. Today is no different. We are praying for more answers to explain the medical anomaly, which is our beautiful daughter. Today is a double-edged sword. If the doctors find what they suspect, it would answer many questions. However, if they find what they suspect, well, that discovery begins an entirely new journey.

Our baby girl's test is over. Now we wait for the answers that will inform us which fork in the road we will travel along. Waiting always seems to be the most arduous task. That is until I consider the many parents leaving this place tonight, without their children, while I walk out, hand in hand with my husband and my arm around my daughter.



Comments

Post a Comment

Popular posts from this blog

Allies of Love

Image
While running errands a few weeks ago, I ran into an old acquaintance. We were catching up with the usual pleasantries. “How is your son? Does he have a steady girlfriend?” I replied, “No, but he and his boyfriend have been together for more than a year and a half.” With a horrified and shocked look, followed by a snarky reply, she inquired, “Well, how is that?” I gave a quizzical glare until she finished. On some level, my mind knew where her comment was going, “Having a gay son?”   After what I am sure was an equally, if not more, shocked look in my eyes, followed by an image in my mind, playing out like a seventies cartoon of a baseball hitting her upside the head. I replied with, “I don’t know. What is it like having a heterosexual son?” My response left her speechless, and we soon parted ways.   Since that afternoon, I have not been able to shake the insensitive encounter from my thoughts. I am unsure if it was the underlying tone of her question that offended me. Perhaps it w
Read more

In A Perfect World, There Would be More Answers and Less Questions

Image
  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. 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 circumstances in perspective. Regardless, we know 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 several months. In hindsight, it probably st
Read more

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