Micro Musing: Held in the Hard (A Dōlightful Fight)

I just don’t wanna anymore. As a long-term patient, I’m tired of all the treatments and therapies. I’m tired of ‘being messed with’ every few minutes. I know each one is vital to keeping me alive right now. I know I need them all. But I just can’t want them anymore. I simply want 24 hours of no IVs, pills, nebulizers, exercises, labs, nurses, or doctors! I just want a few hours of being a ‘normal healthy adult.’ Whatever that even means!

Here’s a little peek into my day-to-day.

The world’s best personal nurse, my Daddy, starts my day at 6 am with my first 30-minute IV infusion of an antibiotic called Merrem. Next, I down a handful of pills, inhale a 15-minute nebulizer treatment, eat breakfast, check my blood sugar, and administer long- and short-acting insulin.

It’s now 9 am and time for my second IV antibiotic, Zyvox. This infusion takes about 75 minutes. It’s immediately followed by my second IV dose of Merrem.

Soon the clock strikes noon, reminding us that it’s time to take more pills, do a 1-hour nebulizer treatment, and administer more insulin.

Two hours later, at 1400, it’s time for another 30-minute IV antibiotic infusion.

Next, it’s all about physical therapy - working to gain leg strength, gait stability, increase muscle memory, bolster my arm strength, and reteach my right side how to act normally. Dad is at my side as we work on the outpatient physical therapy plan for about 90 minutes.

Soon it’s dinner time with more pills, a 20-minute nebulizer treatment, and the ever-needed blood sugar drill.

At 8 pm, it’s time for my 5th IV infusion of the day lasting about 75 minutes. We aim for my 6th and final IV infusion to be completed about 10 pm. Dad does my final line flush before kissing me on the forehead, praying for God’s protection, and telling me how much he loves me.

I then start my last nebulizer treatments and take final round of meds for the day. I aim for lights out around midnight.

Depending on my racing mind, I either call it a day or take some decompression time. Lately, that’s been coloring on my iPad while listening to a podcast or TV show. Normally, I chat with the Lord about my day as I process what’s next for tomorrow.

My days feel like constant IV infusions, nebulizer treatments, PT routines, doctor appointments, and medical interventions.

The highlight of my day is lunchtime with Lovie. We get to share random chatter and then do our Mama/Daughter Bible Study. It’s a bright spot in the middle of the mundane.

Another highlight is finding laughter in PT exercises gone awry or the medical humdrum. I’m so grateful that Dad helps me find my #LITBOAEGlimmers in our ordinary days.

For whatever the day holds, I have found Jesus Christ to be faithful. Friends, I’m in the middle of the storm and honestly too tired to even cry. I’m too worn to yell at Heaven’s throne room. And, honestly, while there is much to yell about, there’s also much to marvel at. Yes, I have a scary chasm in my brain that still holds infection. But … I’m still alive to tell the world that my God is faithful. And that miracle isn’t lost on me. Hard times? Yes. Pathways I wouldn’t have chosen? Sure! But times where Jesus Christ has shown His faithfulness? Without a doubt!

So here I am in this dolightful© life. Living in a state that gracefully intertwines the profound tension of a doleful and delightful life simultaneously, where God continues to weave a narrative tapestry of beauty.

So how am I holding up? I’m not really sure. Just moving forward one step at a time. Grateful for His grace to keep fighting forward. Exhausted by the need to fight forward. But I slowly stride forward toward the goal He has set before me.