Dear other parent,
Tonight you made a comment that isolated a large group of people, whether you realize it or not. We are also very much alike, whether you realize it or not. Our children even share the same diagnosis, only mine is now an angel.
Tonight, in a ‘support’ group a post was made to say (me paraphrasing) ‘trust your gut, YOU are the parent, discuss with your doctors, etc’. The post also stated the parent might be sensitive to the recent discussions in the group due to his angel’s birthday being earlier this month and that the holidays are hard on bereaved parents. But your reaction/comment only further isolated bereaved parents like myself. To say (once again paraphrasing), maybe there should be a group for angel parents because the rest of you haven’t experienced that yet, hurt. That you live in hope and only for today, hurt. Do you not think us bereaved parents did or still do?
It’s already extremely hard to even still participate, even if infrequently, in these ‘support groups’. But we still do it because we have experience and have witnessed the unimaginable. We still want to share that knowledge and expertise. We still want to keep up with children (so much like our own). We still want to hope, pray for, and cherish these children (so much like our own). I can say from my experience that these ‘groups’ can be pure torture at times and that’s why so many bereaved parents choose to separate completely from them and things like them (and I sometimes wonder why I haven’t) But to some of us, it’s still ‘home’. It’s also extremely difficult to speak of our children’s finally days/weeks/months, whatever it may be. But some of us choose to be open and honest with other parents in similar situations.
To be a bereaved parent is very isolating, because, truly, not many people understand and we know that. Being part of a ‘support’ group is suppose to feel safe. We’re all suppose to do exactly what the title says….support….each other….including ones who have been or are in a situation ‘we haven’t been through yet’. We do have a group for angel parents but we shouldn’t be made to feel like we should be exiled to that group only.
You were right saying we all live on borrowed time. But some, like our children with shortened life spans, are not guaranteed as much time as we would like. You’re right in saying people diagnosed with terminal cancer don’t just lay down and die, as they shouldn’t. But no one said that our children or us, as their parents, should either. I know I never once felt that way. I lived every day like it was Parker’s last, but planned for her future like she’d live to be 100. Just like I’m sure you do for your child. But should I not speak of any day being her last, because you don’t like to think of it? I didn’t like thinking of it either, but it was also my reality. I just never dwelled on it.
You live in hope. So did I. Every second of every day that Parker was alive. I still live in hope. Hope that she’s dancing, singing, and playing. Hope that she’s watching over me. Hope that she’s proud. Hope that the day we meet again will consist of her jumping into my arms and speaking the words, I love you mom. Hope is essential in the life of a special needs parent and a bereaved parent. But just because I speak of life as a bereaved parent doesn’t mean hope doesn’t exist.
Please remember that next time you post/comment in any ‘support group’ that we’re there to support each other. We all have different experiences, different outcomes, and a wide arrange of opinions – and they’re just those, opinions – that’s what makes these forums so invaluable.
the mother who’s been in your shoes