One of the things I want to start doing with Sundays with Sammy is interviewing other people because my experience is not everyone’s. More than anything, my goal with this substack is to help families feel less alone and the church minister well.
I have a few things I will answer myself this morning. If you are interested in joining me at some point in the future, let me know. Also if there are questions that you’d like to see answered, I’d love to have that feed back.
Tell me a little bit about your story.
I won’t answer this question this morning - because you have access to the whole Sundays with Sammy archives, so you can read all our stories.
What has the church done well?
For us, one of the things the church did really well was give us space to grieve. When we got the news about Sammy’s diagnosis, they let me grieve with my family and gave us space. My bishop was also good about making sure I didn’t push myself.
Our synod was scheduled for the same time Sam would have his heart surgery. It hadn’t even occurred to me that I wouldn’t be able to attend. One day, I was talking to him, and he told me I shouldn’t attend. That was a huge sigh of relief.
I have also seen Sam be accepted with wide arms. Everyone at church loves him and is excited that they can now give him hugs. They have mourned with us and rejoiced in his milestones. I think Sam has a safe place to grow and flourish in our little church.
What do you wish the church did better?
The giving of space was a double-edged sword. There were also times when I felt incredibly isolated. Somehow, no one at Synod knew I wasn’t going to be there because of Sam’s surgery, and that hurt a lot. I realize this sounds a little hypocritical, but finding the balance between enough space and too much is difficult. However, it’s helpful when someone can learn how to do it. Sam’s surgery and first emergency hospitalizations were profoundly lonely.
I also had a few well-intended people give me “advice.” This advice was always unsolicited and, often, wasn’t nearly as helpful as the person thought. A few times, it ended up being pretty painful to receive. Most people want their children to thrive - to achieve their wildest dreams. To have someone limit that before my child was even born hurt.
What is one thing you wish people knew?
One minor seeming thing is the language people use about Sam. It sounds picky, but it goes back to identity. He isn’t a “down’s kiddo.” He’s a kid with Down’s Syndrome. I never realized the radical difference between the two, but one is his identity; the other is just a part of it. The fact that he has Down’s syndrome isn’t his whole identity; in fact, far from it. Sam also thinks his mom is the funniest person in the world, loves his daddy and his sister, thinks turtles are so fun, likes to make noise, and hits the drum his memory brought him. He is as complex as his sister and as unique as she is.
What question do you wish I was asking?
I’d love your feedback on this one, even if you’re not a parent of a kiddo with extra challenges. If you’re reading this substack, you care very much for people, including those different from you. So let me know what you want to know.