"Grief is like a roller coaster. You loop around more than once. And, it can be triggered by milestones."
Looping: So reads a power point slide from the Autism Parent Orientation I co-lead for the Autism Society of Middle Tennessee every other month. And here I am. Looping. Looping because it's May. A milestone for many families who often have their special needs children's Individual Educational Plans (IEP's) during this last month of the school year. A time when we look back at our children's progress and for many of us, the progress is incredibly difficult to measure and the teachers and administrators and the systems that measure can be less than sensitive about it all.
Looping: While my days of struggling with that annual milestone have long ago faded, I am reminded of them this late spring as I watch the evidence of progress all around me. It's called having an almost 18-year-old. And finding myself dusting off cobwebs in my memory as I receive graduation invitations from two friends whose children were in my child's old playgroup.
On mother's day my spiritual teacher urged me to grieve the thing I've never grieved. The loss of normalcy. For the life I never had. I had long ago embraced the life I do have with my differently abled child, but not what I lost. The child that was not born. The child I had expected. I've spent so much time concentrating on the adapting, that I forgot this tiny but important detail.
"We teach best that which we need to learn most." ~ Richard Bach
Looping: First my friend Anne messaged me on Facebook asking for my address and writing that she had something to send me. That's when I had to clean out those cobwebs and do the math that I, unlike my friends, had held Grace back and repeated kindergarten, so their children were graduating on time, a year ahead of my own.
Looping: And then there was the Facebook message from Julie also asking for my address. And that's when it hit me like jab into the center of my heart. And that is also when I knew that my teacher was right. When he began talking about this unhealed pain I could not comprehend it's existence. He is right, there is unhealed pain way down into the core of my being.
Looping: I cannot say that it is healed. Yet. I think that it's been festering for a number of years. Maybe, probably, all these years. But, especially the last two or three as I am looping back to an earlier time when this journey all began. While my friends are shopping for college dorm rooms, I'm wrangling Grace from the middle of the road where I look back and she's stopped for some reason unaware, at 18–just as she was at 3–that there's danger there. And I am aware of the metaphor here. Stopped. In the middle of the Road.
Looping: Instead of moving forward like my friends, I am revisiting the challenges of a young child in early intervention, juggling a myriad of interventions. Only, now there's less interventions, but like then I am patching them all together, facing a summer of driving across town every day for a wee three hours at a time.
"Rocks are hard. Water is wet." My teacher reminds me.
And then it comes to me. While Julie and Anne are throwing graduation parties, yesterday I threw an art party. My daughter's path is different. That's all. (Well, it's a lot of all, actually.) But how beautiful. Like both of their children, I am adapting to what is needed for the journey of and with my own.
And though our journey will be minus what society anoints as "normal," their journeys are also of the human variety, which means, of course, there are hurdles, challenges, struggles.
The rest of the series:
Leisa, This is so well written. Please tell everyone you know whose child is somehow different that this grieving is a part of it all. We want so much to have our children be ‘normal’ and then we finally ask, “What is normal?”
“grieving the loss of normalcy” – powerful – and I can feel it in your words. The person you love most in the world is the person that created this new normal – and you created her – looping. I wonder, at this point in my life, if I have more than a little unfinished grieving, There is loss to grieve about – maybe normalcy too. But then of course, what’s normal? Your path has been YOUR path – and even with all the challenges I doubt seriously you would give it back. Your mama love is too strong – too protective – always will be. God bless you, Leisa.
Interesting views. Thanks for blogging about this. Wish I saw this post earlier.
Andy
hey G, on Friday i got a comment on my blog about SpiderSam from his best frend teillng me to take what i wrote down cos he’d told me b4 Sam4 hated the internet and wouldn’t like me writing about him. in January i’d decided never to contact this guy agen cos we were always at each others throats but another friend of SpiderSam told me about a baby born in Feb with his full first and second name. We were both so happy to know this and so was his family. i thought dumb-ass might like to know, not so. I really am never gonna contact him again now.And yes, SpiderSam and i love spiders. we always txted each other when we found one. That spider in your photo looks so beautiful. feel free to rehome her with me 🙂