Throughout my life I have had places where I feel like I fit in. They have changed drastically over time as people and places have come and go. I think it's extremely important to have a sense of brotherhood in your life. Whether you bond with people who have a similar hobby, who work with you, who live near you, whatever. It's such a big part of my human experience.
The people I find myself feeling incredibly akin to lately are people who walk a similar path with their children. People who live a similar life of doctors, diagnoses, therapies, etc. They know me. They understand me. They don't pity us... ever. They know. When I step into the hospital where we take the girls to see all of their specialists it feels like a home away from home. There are familiar people. No one stares when Abby flaps or Grace freaks because an air conditioner comes on unexpectedly. They might even smile or laugh. They get it. They get us.
This weekend we were in the grocery store. As we walked in there was a Dad holding a little girl with an NG tube. As we walked by and admired the sweet, sweet baby girl they smiled as Abby flapped and head rolled. Brian smiled at the Dad and said "been there... not fun." He smiled back and you could see how wonderful it was for someone to talk to him and not give him the pity look. He said "so glad that we are not alone. How is yours?" We pointed to Abby who was smiling and giggling and the other Dad beamed. Later in the trip that father and the mother sought us out to ask us about our experiences, doctors, etc. It was a great feeling of connectedness. We both have to live through our trials but other families are doing it too.
It is not a brotherhood I ever thought I would find myself in but it's the one I got. :D
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Funny to see this topic as I was about to email you. Over the weekend we were at an outdoor restaurant and many kids were playing off to the side under parent's watchful eyes. Many tables seemed to be watchful since occasionally the little ones were not in view of the parents.
There were two little girls of not quite the same size that appear to have motor issues, possibly similar to A & G -- based on watching them play.
Remembering all you've said over the years, when I did run into the mother later in the ladies room with one of them, I asked if they were twins (yes!) and complimented her daughter on her beautiful curls. A bit of normalcy.
Thanks for helping me learn.
I just wrote about this too - where we belong - and I'm not sure we really belong anywhere, but my other SN parents are really the ones that I'm the closest to, and really get us more than anyone else. I'm so lucky - there are amazing people here and such diversity!
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