Surpassing Soraya’s “Timeline”

It’s July. We did it.

We passed the timeline our doctors told us for when Soraya would die.

I purposely chose not to remember the exact date they gave us, as I did not want to have the DEADLINE of their prediction imprinted in my mind. What I remember is that it was June, and it was two years ago.

When our doctors shared this estimated timeline with us, Safi and I decided NOT to share it with family, friends, or the world at large.

Why? I didn’t want to deal with the distress the knowledge could cause, or the potential mentality of it becoming a “date to beat.” The fact of the matter was, and is, that there was no winning or curing this. It isn’t like a GPS ETA that can be overcome if you just drive fast enough or take a shortcut down a back road.

Surprisingly, knowing this timeline gave us some unexpected gifts.

The idea that being given an estimated date of when your child will pass away could ultimately end up being a gift seems crazy…but it gave us the very evident framework that time with Soraya is limited, which led to us being more intentional about how we spend that time.

While we often talk about the grand way we suck the joy out of life, we have not shared much about how knowing about this timeline has impacted our life in more subtle ways.

Some ways this timeline has impacted our lives in the last two years include…

  1. Asking the babysitters to take LOTS of pics and videos. Typically people take pictures of big events...but knowing time with Soraya is limited, we document daily occurrences and the mundane moments. We have a Dropbox link that Safi created that we’ve filled with memories and will continue to fill.

  2. Taking tons of voice memos. We record phrases like “I love you Mom,” or Soraya sharing any story with us so we can save it and listen whenever we want/need in the future.

  3. Saving cards with Soraya’s handwriting and pictures she draws. We know that having these physical mementos will mean the world to us in the future when we’re missing her.

  4. Keeping a running list of Soraya quotes – both profoundly philosophical and hilarious! (We also started keeping quotes of all our family members saying things we want to remember.)

Now what?

Now that we have passed the timeline we were given, I feel free to share. We can go back (or get closer) to living like everyone else in that we all know we will die. We have no control over when that will happen, but we know it will. This is just a fact of life.

While we know Soraya has a life-limiting condition, this timeline has truly provided a mindset of how to live with the fragility of life in mind. Let’s make the most of it.

Previous
Previous

Soraya Feels Seen (Our SEEN.tv Feature!)

Next
Next

Sibling Caretaking: It’s Not All or Nothing