Tonight as Michael and I were talking about SMA related things (a usual daily occurrence), we stopped and noticed how we're really living in two different worlds.
We have "our" world. The world we've been used to.
And then we have the "SMA" world.
Both worlds together now make up our life.
But they are still very separate.
"Our" world (the old world we were used to) included many things…
- Our families.
- Our friends.
- Our church.
- Our work.
- Our day-to-day activities with the kids (preschool, play dates, etc.).
- Other day-to-day activities such as running errands, doing laundry/housework, managing our finances, etc.
And then there's the new world. The "SMA" world. This world has a whole new set of things (not replacing our "old" things, but adding to them)…
- Therapies.
- Doctor Appointments.
- Equipment.
- Emotions. A whole new set of emotions that we didn't even know existed. That we didn't realize the human soul was capable of feeling.
- Exhaustion
Like I said, so far these two worlds have been very separate. But I feel like they're going to have to start combining. At some point.
After all, BOTH of these worlds are a reality for us. BOTH of these worlds are part of our day-to-day activities.
But it's strange trying to incorporate our SMA life into life as we once knew it. Into relationships that used to be a certain way.
We've found that it is so easy for us to connect with other SMA families. We've been corresponding with several in particular over the past few months, all of whom have children who have been recently diagnosed, like Ella. They understand this new life. Completely.
It's sometimes hard to put into words what we're feeling. It's hard to convey the emotions involved with this type of diagnosis to someone who hasn't experienced it. Sometimes we don't want to. It becomes very easy to isolate ourselves from those who have been closest to us before SMA entered our life.
But these worlds are one and the same for us now. We can't pretend that one doesn't exist while we're wrapped up in the other. And that goes for both worlds.
So in time, we're going to have to figure out how these two worlds will interact with each other.
As uncomfortable as it is, we are going to have to figure out a way to mesh these two worlds together. We have to figure out how SMA fits into our "life as we once knew it".
