Being triggered

For the last couple of years I keep seeing a quote which says you only get 18 summers with your children and that you must make the most out of them. Let me tell you how triggering this is for me and many other families who have children who have life limiting disorders.

None of us are promised a full life and life is precious. However, when you have a child who is life limited you aren't even promised tomorrow. A lot of our children won't make it to adulthood. That means they won't even get to have the 18 summers they are supposed to have with us. It's a thought that most of us think about daily. We are already trying to make the most of every moment. We can't plan for those 18 years because the reality is that the next summer may not feature our child.

Many of our community have lost their children in the first few years of their lives. This is something no one should have to go through.

Imagine them then seeing the post saying they have 18 summers with their child.

For those who don't have to think about losing their child at any point, I appreciate that thinking of those precious 18 summers with their children is important. Children aren't always going to be children, they will enter adulthood at some point, except not all of them do.

For 14 years I have prepared myself that I may not get to experience adulthood with my son. I've prepared for the most heart breaking thing to happen. I've made the most of every experience and treasured every moment we have together. Each milestone he reaches.

Even if my son does make it to adulthood I cannot guarantee that those 18 summers will have been fully filled with fun. We are often in hospital due to his condition. We spend a lot of time at home due to not being able to go out, either due to seizures, not being able to access places or resting and recovering.

Does that mean we should put pressure on ourselves because we've not made the most of that summer, one of the important 18?

No it doesn't. It doesn't mean we should feel bad because we've done what our child has needed.

I'm not asking for people to stop enjoying their 18 summers with their children. I'm asking for those to be mindful of those of us who aren't promised those summers. Those that aren't promised any amount of time with their children. We should all be enjoying our time with our children, because after all time is precious.