I’ve worried about David’s death his whole life. It’s been like a dark cloud hanging over us. With every sniffle the thought “Is this the cold that turns to pneumonia and we lose him?” And underneath that dark cloud has been a lot of guilt. Have I cared for him well enough? And oh my gosh what if he dies and it’s my fault and I have to carry that for the rest of my life?
This isn’t an irrational fear. We have had a handful of near death experiences with David and we know his life will likely be shorter because of his syndrome and respiratory issues.
So how HOW do we live in this kind of reality? I’ve done a lot of therapy and I’ve worked to change my thought life. Instead of being afraid of death I’ve tried to become curious. Instead of asking, “Is this the cold that leads to pneumonia…” I remind myself David is a fighter and he’s made it through some serious surgeries and illnesses.
The reality is WE ALL DIE and I don’t live in fear of my own death. I don’t feel extreme guilt and worry about my husband or my other son. I don’t chose when I die and I cannot control David’s death. I am his mother and advocate—a big job yes! I am not God. I cannot save him. I can (and do) love him well (while loving myself too) and I can trust God holds David’s life and death.
Maybe death isn’t the worst thing that can happen? After all it happens to all of us. Maybe I can’t understand death. Maybe it’s something to be curious about instead of something to fear. Maybe death can be complex and layered with feelings of loss, sadness, relief, beauty, the belief that God is at work—even in death.
I believe God is making all things new.
I believe God loves David (and me, and you).
I believe life is meant to be lived and joy is ours for the taking.
I believe there is beauty in life and beauty in death.
I believe I can let go of trying to control things beyond my control. I can exhale, relax, let go of guilt.
I am a human being, being human—amazing, imperfect and good enough. God holds allllll of this.