Don’t Forget to Dream Big

My happy place is blue-sky thinking. It’s the place where constraints can change, where resources and money are infinite, and where my job often needs me to be (as a designer). I often end up in this space when it comes to thinking about my family and personal life as well. After all, it’s fun to be a little kid and enter into our imagination. But over time, I found myself afraid of going to that place after seeing Keegan, my husband with AxSpa, struggle with the basic tasks. This was several years ago before his diagnosis, going on Humira, and double total hip replacement.

Everyone with AxSpa has been at their lowest, and it’s a scary place

Even as his caregiver, my sense of “what if” and hope for the future dwindled over time. My usual optimistic self became a bit more pessimistic and anxious, and downright nihilistic at times. I had put so much pressure on my shoulders to get Keegan a diagnosis. (And then medication. And then surgeries.) I’ve seen the lowest of low. I’ve been at his side. And while I can’t feel his pain, I remember what those days were like for both of us.

The hard thing for me is coming out of that scary place with hope

I’ve realized recently that my mind still lives in that dark and scary place. I’m always anxious that he’ll go back to that place physically. I live on edge some days in fear of it, especially with two little kids. (What if he can’t take care of them? How would we afford daycare?) The catastrophic thinking becomes so intense! But it all comes from past experience. This didn’t develop overnight—and I’ve gotten to a place where I’m finally realizing that our life isn’t that way anymore. It’s not like Keegan can easily revert back to having osteoarthritis in both of his hips.

I’m getting myself out of the scary place by dreaming big

I want to feel like myself again—full of light and hope for the future. To see us as a family thriving, and not just surviving. It seems scary to dream big some days. (What if we never get to travel internationally?) Sometimes it feels too risky. Like I’m getting my hopes up only to be disappointed.

But, that’s not the case at all. The point of dreaming big isn’t to put all our eggs in one basket and focus only on one goal or aspiration. It’s to know that tomorrow can bring the things we desire in life. And even if that’s not traveling internationally, maybe by dreaming big, and having a discussion as a family, we take a vacation, just the four of us together.

So, to all you AxSpa warriors out there, dream big. It’s hard many days for me. I worry about sounding absurd in my dreams. But I can’t achieve what I want for my family without those dreams. And who knows, maybe in another 10 years (20 years after Keegan’s diagnosis), his AxSpa will be in remission. So we better know what we want to do so we can book those flights when we get the chance.

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