Hi Everyone,

I’m sitting at the laptop searching for the words for tonight’s entry. All I can think of is a story the band director of our high school once shared with me. The students coming up from the middle school were given music in the summer and required to not only learn the chosen composition but have their scales memorized as well. The director was familiar with our family having JohnPaul, trumpet; and Caitlin, tenor/bari saxophone, for 4 years. I was entering my 6th year as Band Booster President.

Most kids stress about the audition to enter the HS band. Corey played the trumpet. The director told me that Corey’s audition is one that he’d never forget. Corey entered the classroom and didn’t appear to be nervous at all. She sat and played the required composition. When asked to play her memorized chromatic scale she straightened her posture, lifted her trumpet to her mouth, took a deep breath, paused and turned to him stating in a matter of fact tone; “I got nothin’”. In his 20+ years, he’d never experienced an audition quite like Corey’s.

I love this story. She was never one to mince words, rarely used a filter and as she matured she held herself accountable for her actions…she wasn’t prepared and admitted it. It’s been a very long four days. Tonight “I’ve got nothin’”. I’m admitting it too.

We didn’t have nursing coverage Friday, Saturday, all but 4 hours on Sunday and the week approaching has several holes in the schedule we hope will be filled. The good news is the agency is replacing the scheduler responsible but that doesn’t help us as we continue to live our day.

Today we went to the ENT. Corey’s thrush is gone but her mouth pain has increased. It is confirmed that it’s Burning Tongue Syndrome. It can last for several months to several years. The doctor wants to run blood work to check her vitamin levels as sometimes a deficit in iron, B complex and others can contribute. All we can really do is continue to use cold water flushes and ice chips to try to alleviate the pain topically.

We returned home to prepare for our cooking lesson but unfortunately Corey had another seizure. This one lasted for 6 minutes. Corey’s head tilts backwards, chin up to the left. Her eyes look up and hard left. Her left arm extends and stiffens. Today she had facial ticks and lost her ability to control her secretions. She was not only drooling, she began to choke on her saliva gasping for air. She was aspirating. When Corey is seizing her body stiffens. I could not lower her chin to her chest to stop her from choking. I was taught to repeatedly call her name until she comes “out of it”. Do you have any idea how long 6 minutes is when you can’t do anything but try to remain calm, watch and wait?

When Corey came back, she had paralysis to the left side of her face. She couldn’t squeeze my finger with her left hand but she could answer several questions to test her focus and memory. The good news is she rebounded much quicker than she did in September and she had a full smile by bedtime. She was exhausted but responsive and interactive.

This journal focuses on the positive. It’s not denial; it’s a choice because every day is just plain hard. We’re living a life we are not prepared for but trying to “live” it. There are some days it’s too hard and there’s nothin’ left at the end of a day, including words. Tomorrow is going to come regardless of our wishing time to stop even for just a few minutes.

So how do we live today and cope with the tomorrows that will come whether we’re ready or not? This question is the foundation for this journal. The focus is on how we lived our “today”. Corey woke up happy, smiling, called out to me “good morning” and waved as I entered the kitchen. We had fun during her speech therapy. Diane focused on language development. She asked Corey open ended questions and Corey could “fill in the blank” to close the sentence with her own interpretative phases. We laughed out loud at some of her responses. We are using a balloon for our volleyball these days and she loves our new game. Her core strength is improving and she’s sitting for longer periods of time. Her balance and aim are improving as well. She stood at the walker with Gillian assisting her left leg; she took the most steps she’s taken to date. The nurse we had today is not our regular nurse. She looks at Corey and is in awe of the changes she’s made since she first saw her in June. She commented that her progress from where she was to standing and taking steps is truly a miracle she had the privilege to see today.

Has the last four days been hard? YES! Is tomorrow going to be hard? YES! But the last thought I have tonight as I prepare for another tomorrow is Corey saying “I love you” and the smile she gave me just before she fell asleep.

I love you, too, Corey…to the moon and back! xoxo