My phone died in my hand yesterday morning as I was beginning to compose a reply to a comment on a blog post I saw linked on some facebook page.
The post was moving and sad, a mother whose son was non-verbal and though his condition wasn't named, it's assumed it's autism by readers and the post coinciding with World Autism Awareness Day. My son isn't Autistic, but I know the feelings she described because I have them. We are mothers who grieve. There's no competition or comparison here, we grieve.
The comment I was typing when my phone turned off was going to be full of information, presented in a reactive, emotional way that wouldn't have been helpful for anyone. The coincidence of the dead phone left me relieved I'd spared myself getting worked up, however I can't find the post again. Can't find the blog, or the facebook page it came from out of the dozens I follow that post similar content. That part stinks. While my response to a commenter would have done zero good for anyone, I do have a message for the mother that laid her soul bare in a moving blog post. Several really, but there are three main things I want to say to her.
1. You are not alone. Find a tribe of moms who love and understand you online or in person. Be yourself. Be flawed, be real, you will find a group of people who love and support you. My tribe formed online by joining BabyCenter Communities while I was pregnant. Support was an internet connection away. First there was the birth club, then the Spina Bifida Kids group, once we had a diagnosis in utero. Everyone moved to facebook groups and seven years later I've made and lost friends, watched as my core people evolved, and I've had real people to cry with, to admit defeat with, to share triumphs with, and offer support in return. Sure there's a weeding out of nutballs and jerks, but that's everywhere.
2. You are doing your best. This is a two parter. You really are doing your best and people who read your post and find fault with your story are not only assholes, they're wrong. Grieving the things you wanted for your child is normal. Parenting a child with disabilities and health conditions is hard as hell and you go on when you have nothing left because you must even when you're raw, lost, or feel dead inside. Shaking off what other people say is hard, but it's harder when you've written a post exposing your throat and someone wants to cut it. I don't blog much because I'm not a great writer, I can be reactive, emotional, and angry and my phone isn't always about to save me by dying.
3. The grief you're describing has a name, and it's reserved for us caretakers of children or loved ones with disabilities and chronic health conditions. Chronic Sorrow. There's a book and a web page, www.chronicsorrow.org that can be a source of information and comfort. This grief alone can make it hard to keep going. Combine that with depression, anxiety, physical health or any other myriad issues a person can experience, and the road gets very rough indeed.
Chronic Sorrow isn't really a well known grief response unfortunately. Parents and caregivers are sort of neglected because of the nature of caregiving. People say you can't pour from an empty cup and I know that's true, but time and money are usually a barrier for our self care. My self care includes therapy, manicures, gardening, and getting a break from our daily routine. The only item that gets regular attention on that list is the therapy, it's important and helps me deal with the grief, anger, and other feelings that are so big that I can't hold them alone.
While I'm holding out hope I can find the blog post again, it is a long shot in the vast sea of internet blogs. Maybe she'll see this, probably not. If anyone can identify those feelings of sorrow, grief, of wanting your child to have all the things that are impossible for them and feeling broken about it, and this information helps, I'm happy to put it out there. I'm exposing my throat because you are worth that risk. You love your child and I have love for you, we're in this together and you are not alone.