I tell people that every single thing about every single aspect of my life changed the day my twins were diagnosed. I say that they gained a diagnosis and my soul gained somewhere in the neighborhood of 100 pounds. If I’m being honest, it’s probably more than that. I can feel the weight of that day. Every moment of every day, I can feel it.
As I write this, many of my peers, my people, my village are at a conference in San Diego. They are all meeting in person, exchanging hugs and high fives. They’re celebrating small wins and commiserating in setbacks. They all understand the grief we are all feeling while not allowing it to take away their joy. I’m watching this all unfold on Instagram with a major case of FOMO!
No, not all of them are there now. Plenty of us are behind at home. Some can’t make the trip for travel, work, financial, or medical reasons. I am absolutely where I need to be for my girls right now. I stayed behind to manage appointments that can’t be managed by anyone else right now. This is the right thing to do and I do not regret it in the least.
And I wish I was there. I wish I could finally see these people I have been connecting with on social media. I wish I could finally feel that real sense of community my heavy soul is longing for today. I’ve had a few hard days and y’all, I am tired. My soul is tired. My heart is tired. I just want to rest in the goodness of my people.
Next year, I tell myself. The reality is that I certainly hope I can attend next year. But with rare children you never really know, do you?
Lightening the load
The thing is, I was looking forward to temporarily lightening the load I’m carrying. Being with people who are carrying that same load somehow lightens it, doesn’t it? I was reminded of a quote by a good rare mama friend this week.
“Joy multiplies when it is shared among friends, but grief diminishes with every division.”Swedish Proverb
Holding this grief I feel all the time is lonely. I have my village, mostly online to share these experiences. And yet I still feel a heaviness, a loneliness, and a sorrow that I know most people just don’t understand. For that reason I add my own silent caveat to the above otherwise insightful quote. I think to myself that this is really only true of those who can truly understand your joy and sorrow. There is nothing quite like explaining a good report from therapy to another neuro mama. She will squeal and jump up and down for you and your child because she really understands how hard that is. At the same time, she won’t point out that one win when you are getting bad news about another therapy the following week. She gets it! So I can’t share this grief with those around me most days. They don’t understand. And that’s OK. I wouldn’t wish this on anyone.
We weren’t meant to live this way. We weren’t meant to live in grief and sadness. I know this is a phase and it’s hitting me particularly hard this week. Next week will be better. I know I am finding moments of laughter and joy in each day and that wont stop.
Acceptance is the key
A rare mama friend (I have some wise friends, don’t I) is always saying that acceptance is a recurring event. It’s not something we do one time and then it’s done. Yesterday I accepted that my life is different than I had hoped it would be. Today I accept that I am here, at home. I’m simply not supposed to be at this conference. Not this year. Tomorrow I will have to accept something else related to my girls’ diagnoses. Maybe it will be that our life is different for yet another reason, or maybe I will be practicing a whole new acceptance. Either way, acceptance is the only way forward.
Our hearts weren’t meant to live broken. So we pick up our pieces and we slap some Gorilla Glue on them and put them back together. As rare parents, we do this almost daily. Our souls weren’t meant to carry so much weight. So we share our grief to lighten the load and then we can continue on with our day. As rare parents, we should do this almost daily.
If you’re in search of someone to halve your grief, I got you! We are our own village, aren’t we?