About five years ago, I was tucking my son in for bed one night. I turned off the lights, turned on the ceiling fan (it’s a Texas thing) and kneeled near his bed so we could say our prayers.
After we finished, I gave him a hug, told him I loved him and as I stood to walk out, he asked,
“Daddy, what are you going to dream about?”
I was touched by his sweet and innocent question. My response, which probably included a reference to world peace or other similar superlatives, was forgettable.
Then, I asked him what he was going to dream about. He said, “the Cubs winning the World Series!”
That brought quite the chuckle from me. This was in 2012, four years prior to the Chicago Cubs magical run to World Series glory.
I told him that many Cubs fans had been dreaming about that for over 100 years.
“Who knows,” I responded. “Maybe one day.”
From that moment, we started a tradition.
Whenever it’s bedtime for our son, we always ask and answer the question, “what are you going to dream about?”
Sure, a few times I probably answered back with something like “Nationals winning the World Series,” but usually, my response mentions something along the lines of well wishes for the next day.
And it’s true. Enjoying a beautiful day, creating wonderful and lasting memories family memories – in my world, that’s living the dream. But those hopes and wishes are part of the shiny, positive exterior that I often present to my kids. Although I mean every word of them, it’s not the entire story.
There are many more dreams of mine that go untold. Although they might not make for great bedtime stories, they are part of the cold reality of living with a chronic disease. I dream about:
- My children not seeing me wince in pain anymore. It’s kind of a regular thing, and it shouldn’t be. I don’t want that to be part of their childhood memories of their father when they grow up.
- Having energy. You know that feeling you get after a long run or a hectic, but successful day at the office? You just want to collapse on your couch in euphoric exhaustion? I miss that feeling. Because that meant I was burning actual energy away and by resting I was recharging for the next day. Now, it’s as if there is an evil troll, following me throughout the day, continuously draining my body of energy. I never collapse in elated exhaustion, because being exhausted is just my normal state of being.
- No more clumsiness. The kind that often leaves random bruises: knocking into tables, stumbling, dropping things and falling.
- No more doctor appointments, phone calls, tests or medical paperwork. Please, no more paperwork.
- “Daddy’s Home!” You know that feeling you get when you return home from work–jubilant children run to you, excited to talk about their day, your spouse greets you with a kiss, even the dog lets out a bark as his tail wags excitedly? I don’t. I’m almost always here at home, so that scenario and associated feelings never occur.
- To do what I want, when I want. I just get to live and makes choices irrespective of my MS albatross.
- Career successes. For me, it’s not about the money or ego. It’s about seeing pride in my wife or children’s eyes. My kiddos getting a first-hand lesson in a strong work ethic and my wife appreciating that my sacrifices at the office are out of love for her and our family.
- Running amuck while playing with kids. No worries about stumbling, lack of energy or how sore and exhausted I will be later that day.
- Have I mentioned no more medical paperwork?
And a cure for MS. That. That’s the ultimate dream.
I know, it’s a lot to ask for.
And I know one can’t control or decide what they dream about, but it’s fun to think that you could. It might have taken the Chicago Cubs 108 years to win a World Series but they did.
Against a century of odds, millions of dreams came true. Who knows, maybe mine are next?
Address racial disparities and inequities in the healthcare system that impede access to care, and ultimately, a cure, for MS.