My Dad sometimes comes by the house on his day off. Today we split a pastrami sandwich- Tyler was at work and Nora was tired. We are upping one of Nora’s medications this week – more quickly than anticipated. This of course leaves our girl sleepy, less alert, droopy and a little dazed– often for days.
After we ate, my Dad (Papa Jim) played the harmonica for Nora, she was attentive. She loves sounds and faces. The combination was of course mesmerizing.
I eventually set Nora on her play mat. She kicked and watched Papa Jim talk (yes watched him talk, the man talks with his hands.)
It was nice to be with him. An afternoon with Papa Jim is like having a cup of tea with Jimmy Stewart- the afternoon was whimsical- animated and blissfully comical.
He had been by the house earlier in the week, but it had been a rough day so we didn’t talk a whole lot. By rough day I mean I had a rough conversation with the neurologist.
Her words still rang in the back of my mind:
“Normally when a child fails to respond to two drugs (like Nora) the percentage chance we will ever gain control of the seizures is very slim. As her seizures continue to increase, we will need to consider starting her on a third medication, and perhaps the Ketogenic diet as well.”
As you might imagine, Tyler and I are still processing this information. We are doing our best to learn about these next options in Nora’s treatment. The biggest side effect of this third drug is the potential loss of peripheral vision. As for the Ketogenic diet, it is no small commitment- it starts with a 3-4 day hospital stay and includes an intensely monitored and regimented specialized diet.
Of course all this has been a bit overwhelming and emotional for all of us.
“Oh Dad,” I said, “I just keep thinking about Christmas. I just keep feeling- hoping and praying that things will be different- maybe better.”
If you know me even a little, you probably know I love Christmas.
In college I would often start listening to Christmas music in October (I have since repented and adopted the day after Thanksgiving as the appropriate time to start the Christmas playlist- yes Melanie, I know you object.)
I love Christmas so much that Tyler created a Christmas proposal in front of a large inflatable Santa Claus at the beginning of April because I so badly wanted to be proposed to during the most magically romantic time of the year.
Like many of you, I find moments of holiness in a quiet house, under a glowing tree or in front of a crackling fire. As odd as it seems sometimes, there is something right about the world under the glow of your neighbor’s alternating LED icicles. Somehow it works. It’s beautiful. It just is.
Call me cliché, but Christmas is also the season of miracles- and God knows we could use a miracle right now.
“Jesse, things will most certainly be different at Christmas. Maybe better, perhaps worse. But absolutely they will be different.”
I thought of Michelle’s text from earlier in the week, “Good news is coming Jesse Bear, Lord bring us good news soon…”
This is what binds my heart and soul to Christmas- The promise of good news- the promise of God in the flesh. Immanuel, God with us. Amidst the confusion and suffering in this season of our lives, my heart is holding on to that beautiful miracle. The promise and assurance that Jesus is with us, that he is ever present.
I don’t know how things will be different, I’m learning never to assume. But as we process the neurologist’s words this week, I am holding out for a Christmas miracle (which can, like Christmas engagements, happen all year round). Faithful friends, we ask that you gather near to us once more, in prayer, in faith and in love. Please join me in prayer for a Christmas miracle, for Nora to be healed and for her to continue to thrive regardless of her seizures and the side effects of her medications. Please pray for discernment as we move forward in Nora’s treatment. And please pray relentlessly for hope and faith as we journey onward.