We aren’t an easy group, us parents of children with a life-limiting illness. We see the world differently than most people, most of the time. Our perspective has been forever changed by knowing we will one day be seeing our very own precious little child gain his or her angel wings. Knowing the order of life is reversed. Somewhere in the often dark recesses of our mind, we carry this understanding with us at all times. Many of us, in an unconscious attempt to preserve future sanity, begin the grieving process now while our angel is still alive.
You may find us at times speaking about how we know our child will die…and you will likely be left with your mouth hanging open, if not literally, at least figuratively. Just hold on to something to steady yourself and know we are reeling far more than you are inside.
You may find us at times crying for apparently no reason at all…and you won’t know what to do or say. Just hold us. Hug us. Reach out to us. Just be present. But whatever you do, don’t run away from us.
You may find us talking nonstop because we haven’t spoken in days to another adult about something not related to our angel. Just let us talk.
You may find us desperate for social interaction, because the truth is we don’t get out very often. And those of us like myself that are a single parent, we really never get out very often! Just accept that hint that we want to come see you or the outright invitation for you to come over and visit. Please.
It isn’t easy being friends with “one of us” at times. I am willing to bet, though, that you will not find a friend more willing to fight for you if ever you need it, because we are always prepared to battle. I am willing to bet, though, that you will not find a friend more ready to be your shoulder to cry on when you experience a loss, because we live with loss daily. And I am willing to bet, though, that you will not find a friend more excited to see you, share a cup of whatever you have, and laugh as loudly as we can, because we crave just being a friend and being who we are in those moments we are with you.
No, it’s not always easy being our friend. This is one tough, heart-wrenching journey we are on. But I can tell you most confidently that being our friend will be worth it. If you aren’t strong enough, then that is alright as well. Move on. You won’t be the first friend that has walked away. We need strong friends to surround us to help us stay afloat. So to all of you who are our friends, the most heartfelt thanks and love to you! Thank you!
Now, when shall we get together?