It’s important to know you are not alone.
When Rhema was first diagnosed with autism she received over thirty hours of in-home therapy. Managing her schedule was like a full time job, and our lives seemed very isolated. The first time I went to special needs support group I studied the other mothers. They seemed… sane. They were organized. They were knowledgeable. Their hair was brushed. They were strong. They were beautiful. They could cry. They could laugh. They were still standing. And as I watched them I realized that maybe autism wasn’t my ‘fault’, maybe it just happened, and maybe I would be ok.
Since then I’ve been blessed with a community of friends – in real life and virtual. We share in each others’ journeys, and it is an indescribable gift. My friend Judith said, “It makes it easier somehow knowing our experience isn’t just ours. To know that we are not the only ones who struggle and who rejoice and who struggle again and rejoice again. Our unique cycle of love, pain and hope is something few can understand…” But we have each other.
When someone you love self-injures, it tears your heart. When someone you love self-injures and it seems you are the trigger, it’s gut-wrenching. The other day Hope had to cough several times, and Rhema became so overwhelmed and upset that she hurt herself very badly. Hope got a bag of ice for Rhema’s arms and retreated to her room while I cleaned up. Later when I called Hope down, her face was covered in tears. She said through sobs, “I feel so guilty when she hurts herself. It’s all my fault.”
Oh no. Her sadness broke me. Hope has asthma and allergies. She can no more help her coughing than Rhema can (at least right now) help her reaction to the coughing. I tried to comfort her and assure her, but it didn’t seem to help. Then our precious friends Katie and Brooke and their sweet mama Jess came to my mind. “Hope, I’ve never had a sister with autism to love. I don’t know what it’s like to be you. But you know what? There is someone who knows what it’s like. She has felt like you do and said some of the same things you’ve said.”
Brown button eyes looked up at me, “Who?”
Katie. Kind, beautiful and talented Katie, whom Hope looks up to and adores. They’ve been friends since Hope was just a toddler, and Katie has never let their six year age difference stop them from having a blast when they get together.
Her eyes filled with hope, “Really??”
Later I recounted our troubles to Jess and before I could ask, she said, “Can you guys come over? Or can Katie call Hope?”
Katie called Hope. Hope told her about what happens with Rhema when she coughs. (Hope tries so hard to be strong. It was enlightening for me to hear her talk about it with Katie). Katie had the same story in many ways – watching things unravel, watching her sister hurt – simply because she coughed.
Katie said, “I get it.”
And Hope said, “Yeah.”
“It makes me sad when my sister hurts.”
“But it’s not your fault, Hope. It’s not your fault.”
And even though it’s hard for her to believe that it’s not her fault, Katie said it wasn’t, so Hope whispered, “Yeah.”
Sister-friends, that’s what they are.
And their mothers are thankful and sorry at the same time that their girls share struggles like these.
And so glad they have each other.