a normal wednesday

After we were discharged from the hospital, aside from one more brief visit to the ER for another cluster, we settled into a routine back home.

Juniper continued to experience breakthrough seizures periodically and we worked to adjust her medications. She hated the phenobarbital. She would cry, choke and gag each time we would force it on her. At least it's blood red color and cough syrup smell would make it easy to spot in her reflux for re-dosing.

We gave Juniper her medications twice a day, let the girls spend time together as much as possible, and slept in shifts as we monitored Juniper for seizures around the clock. We continued to sleep in shifts. Sleep for 6 hours, watch the girls alone for six hours. Felt like some kind of torture. We were tired all of the time.

I do recall one evening that I find very comical now. I didn't then. One night I began my six hour shift with plans to watch a movie. The girls had other plans. About a half hour after Coley went to sleep, they both set into a high pitched scream, simultaneously. Synchronized crying was a sport they had become quite good at. I tried everything and when I ran out of options I turned to my secret weapon: noise canceling headphones. I'll never forget sitting there listening to classical music and watching the two of them scream at the top of their lungs until their faces turned bright red. All of the blood rushing to their tiny heads to give them the oxygen they needed to overcome my feeble attempt at passive noise control.

I walked Townes a couple of times a day and started half assing work again the best I could. Things almost felt normal again for a few days.

Then we received news that would change our lives forever. On a normal Wednesday afternoon, Coley and I received the most difficult call of our lives.

Dr. Luke's tone was robotic like no human can be, except for a medical professional who has become desensitized to telling people devastating news.

I don't recall exactly what Dr. Luke said. I do recall that somewhere along the way my focus turned from Dr. Luke's words to Coley's tears. I set out to stop her from crying like I was putting pressure on a gaping, potentially fatal wound.

"It's going to be ok. Juniper is going to be ok" I told her, not convinced of these things in the slightest.

Despite my desperate and delusional cheerleading, Dr. Luke was painfully transparent. I would later be grateful to her for that. There was no lying to ourselves or hiding from this that would make the outcome change.

She informed us that Juniper would likely require care for the rest of her life and that she may never walk or talk.

I continued to put on my best show for Coley but inside the news hit me like a million tiny little pieces of shattered glass. The feeling is what I would expect an innocent person would feel after being handed down a death sentence. My journey would be nothing like death row, but in moments like these the mind tends to dream up its nightmares.

My mind was flooded with dark thoughts. Juniper would never understand what I would read to her - my writings, all the children's books. I'd never get to experience the holidays with her in the way that I'd dreamt it. We would never hike up a mountain together. I'd never teach her to skateboard or how to plant vegetables in the garden. I'd never play catch with her in the yard or help her paint a picture. She'd never ask me questions about psychology or philosophy or nature. I'd never get my world traveling early retirement. Instead I'd spend my days feeding her, cleaning up vomit and changing adult diapers. Of course this is not how things will likely happen at all, but in those moments I couldn't help thinking that way.

There is nothing more painful than the death of a dream.

By the end of the call even Dr. Luke's voice began to crack. The mother in her entered the conversation and heard Coley sobbing. We all tried to survive the next few minutes together, as Dr. Luke described the potential for severe developmental delay, ataxia and hypotonia. 

I felt a stale, but anxious mental fog like coffee after a few consecutive all-nighters. My brain tried to process all of the information.

It was the feeling of tiring early in the marathon, of looking at the steep hills ahead and wanting to give up. This feeling is the breaking of the body and the spirit. There are only two options: give up or press on. If you give up, it's over. The pain subsides but you are out of the race. If you press on, the pain will be so great at times that you will adapt to it and endorphins will kick in to give you temporary relief, but inevitably the pain will continue to return forever, as long as you keep running. 

I began to grieve. 

[back to a few lessons next week]