Gratitude From the 10th Floor

This morning, I awoke with a heavy heart, thinking about everything I had witnessed in the past seven days. There are twenty beds in our unit. Every story is different. Yet I can plainly distinguish one common thread, which runs through each of these stories I have come to understand during our stay at Hopkins: immeasurable love for a child.

I am grateful for the warm camaraderie amongst the parents in our little corner of the hospital. Our smiles are our silent conversations as we pass each other in the halls. A comforting hug has made all the difference in the world...especially when you are on the verge of tears or see another mother desperately trying to hold herself together. A listening heart comprehending the anguish can only be unburdened when our children are out of earshot. Leaving extra food in the kitchen and placing another parent's name on it...because you know they have not had an additional ten minutes to prepare something. It is truly the little things that mean the most.

One girl, the same age as Jayde-Rhiannon, has been here six weeks, and another, only a week, though both girls have spent much of their lives in and out of doctor's offices and hospitals. The first is cared for by her single mother, who only leaves the hospital campus to attend work. The second is cared for by her 73-year-old great-grandmother, who worries about who will care for her grandbaby if something should happen to her.

I feel abundantly blessed to have a fantastic support system. 
Each evening, Nick checks in to see how Jayde is doing. It brings a smile to her face when I tell her, "Uncle Nick is checking in on us." Amongst his questions last night was, "How's mom doing?" I hate long texts. Instead, I give a short reply. Until he asked, I hadn't stopped much to think about how I was doing or to name the varying array of emotions running rampant in my body. I am on Momma Bear autopilot. My mission is to survive the current day so I may witness Jayde's progress the next day. This is not the time or place for high maintenance. Hair clips, ponytails, yoga pants, and no makeup are the dress code. It is easy and simple, allowing me more time to focus on the only person who matters...Jayde.

Uncle Nick visits on his lunch break.

On Tuesday, Leslie brought us dinner. She glances around the room, apologizing for not getting her niece flowers. I am quick to respond, "Jayde already has lots of flowers. You brought us dinner, and you are caring for her mom and dad so we can care for her. That gift is far better than flowers, which will die in a week." It is not that I am not appreciative of all Jayde's beautiful flowers. Albeit a slow process, I have finally come to understand I cannot take care of my sick daughter if I do not stop to take care of myself. 

Yesterday, my parents visited, toting along a cooler full of food. Mom and I walked to find Jayde a smoothie, Leaving Jayde under the watchful eye of my dad and his bad jokes. When I stepped onto the elevator to leave the 10th floor, I remembered to take a deep breath and relax.

Jayde's adorable boyfriend, Brennen, visited for eight hours yesterday. His Momma Bear drove him two hours each way so he could spend time snuggling with Jayde, playing bingo with us, and pushing her around in the wheelchair. The smile on my Baby Girl's face was priceless. It is a wonder her cheeks do not hurt today. 


When Chris arrived home last night, he discovered his mom had washed and changed our bed linens and cleaned the house. Tears streamed down my face from this thoughtful news.

Brady has been a rock for his little sister. They are eagerly planning their next concert adventure. I do not know what I would do without my Bud.

Then there is Jackson...there are not enough positive adjectives in the English language to describe this remarkable man, whom I am fortunate to call my husband.

It takes a village, and while our village may be small-they are mighty.
Today is day seven. Only God knows, and only time will tell what today holds. Yesterday was our best day thus far, but today has only just begun. Jayde and I lay three feet apart. I hear her little voice, "I'm hungry." Her words and that beautiful voice are music to my ears. We are one step closer to Plank Road, maybe as early as tonight. 

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