This morning, my daughter woke up and came straight into my bed.
"Happy Anniversary!", she said.
I gave her a hug, rolled over, and fell back asleep.
An hour later, I made my way downstairs for coffee and cuddles with my dog. My seven-year-old daughter looked at me empathetically and said, "Why do you look so sad and exhausted?"
I couldn't find any words nor the effort to prove her wrong. Instead, I just stood there wondering how she could be so perceptive when I, myself, didn't even understand how I felt.
She asked what she could do to cheer me up.
"Mommy, what do you need to feel better? I'll do anything you want."
She was so incredibly thoughtful and sincere, but instead of telling her nothing or listing all the ways to help- including a miracle- I asked for cuddles. For twenty minutes we cuddled in our family's favorite chair, watching an episode of High School Musical: The Musical: The Series, and I tried my best to focus on nothing but that moment.
Not my fears and constant worries about a job, a new place to live, and our never-ending financial struggles. Not the past, and everything that has happened these last nine years of my marriage. Nothing but her and the cuddles, and our dog who wanted to share in the love fest.
But like all good moments, this one was fleeting, and since then I barely have the desire to acknowledge today in my mind or heart, let alone celebrate it.
Maybe it's because I am not able to separate the memories of my wedding or nine years of my marriage from the near decade worth of struggles that have come with it. Or that I can't help but feel that I lost the man I married a long time ago during the progression of this semi-mystery of a disease. And that I really don't feel like a wife anymore, nor that I have a partner in all of this. Instead, I feel alone. Alone in my sadness and my pain, and alone in any hope I can muster on the days I feel better than today.
But as I've come to learn, each day must go on.
So, I have spent the day searching for songs, avoiding any playlist that contained our wedding song, Three Little Birds by Bob Marley, since it doesn't encourage me as it used to. On days like these, I tend to turn to the ones where the lyrics speak to me, songs that my old roommate used to call "sad white people music".
And I texted a friend, sharing a little bit of how I was feeling, knowing that I could tell her more if I wanted to, but just didn't want to go there. I thought about the many other friends who always tell me "I'm here whenever you need to talk", but I chose not to.
Instead, I sat on my front porch, with a cool summer breeze and my summertime bestie and shadow (my dog) and I started writing. My thoughts continually went back-and-forth between our wedding celebration and the years since, finding complete irony and frustration that the start of my marriage marked the beginning of my greatest challenges and my husband's health decline.
I also thought about how lonely and isolating all of this has been, for both of us.
For a while, it wasn't by choice but due to the symptoms and new onset of struggles that lead to canceled plans and soon, the lack of any plans at all.
Then the reality set in that no one truly "gets it", not even family or close friends, even if they really do try to. It's just too maddening as symptoms come and go, and new ones arise out of nowhere.
I did my best to try to get so many others to understand what we were going through. I sent videos and articles, listed the dozens of symptoms that pop up (sometimes spontaneously, without warning), and spent hours writing chains of texts and emails sharing just how confusing and hopeless our lives had become.
But no one could truly understand unless they lived it, and I wouldn't wish that on anyone.
Even the few who may have witnessed what we once called "episodes" - essentially the sudden onset of cognitive fluctuations, autonomic dysfunction, or Parkinsonism movements- didn't really seem to understand the depth of our concerns. Maybe it's because they just saw a glimpse, and then got to go home and move on, maybe even forget about it.
I get it. There are so many times where I wish I could do that too. And trust me, there have been many days where I barely get it, and I have lived through it all. Every day since it first began, even the very moment all of this surprised us both.
But there's no choice but to face the day, and the nights that end up being the most challenging, while also raising a child, who begins to ask more questions that you can't always find an answer for without mentioning her father's health history.
Then on days like today, you also can't help but wonder what a nine-year anniversary may have felt like if illness wasn't such a large part of it and feel even sadder realizing that it's something I'll never know. You think about all of the sacrifices that you continually make, the dreams that you had to let go of, and the pain that you've felt every day and every night, not knowing what God's plan was but trying to trust that He has one.
And when you let yourself think about it all, you feel more isolated and alone, all over again.
But you do think about those friends, the ones that you've come to trust and learned to be more open with, and I feel a little less alone.