How the Kindness of Strangers Made All the Difference
Being a mother to a child with special needs is a demanding job. My children need things I cannot ignore, no matter how tired or busy I am. Last week I hit my wall, and something had to give. Maybe you noticed it was my column. I could not be the mom my kids needed me to be and still write.
I did what I had to do, which I’ve always done for my kids, but a little bit of me was mad and grieved writing my column.
I had a career once. But once my three sons with Duchenne muscular dystrophy (DMD) were diagnosed, I wanted to be the one who cared for them, and giving up my career was easy.
However, writing this column the last year has given me a little piece of that back, and I like it. And although I write primarily about my sons here, it feels like something I’m doing just for me. As a caregiver, I need that and have come to rely on writing as my time.
Caregiving is isolating. And sometimes, I feel invisible. My husband works, the kids all have their activities, and I’m responsible for ensuring all those things happen on time, with full bellies and clean clothes. It’s a thankless job. And because my family is big and we have many special needs, my social life is nonexistent unless I count attending my children’s many activities.
It’s not the first time I’ve felt this way. I often lean on my Catholic faith when I feel invisible and like my work is unimportant. I read one time, though I don’t remember where, that the mother of Jesus, Mary, spent many invisible years at home with Jesus. We hear about her at the beginning of his life and in the end. Her hidden years are something I’ve been able to relate to, and it helps me through these times.
We had a trip to Kansas City, Missouri, planned for this past weekend to watch a baseball tournament and do some touristy things while we were there. Sometimes a little getaway is a good thing, and it proved true with our trip.
First, we were almost all together — my husband, all four of our boys, and two of our three girls. We had fun. We ate out, went to a museum, and visited Arrowhead Stadium, home of our favorite NFL team, the Chiefs. It was so lovely for me to have the help of my husband with the kids. I didn’t clean anything; the only laundry was baseball uniforms, and I didn’t even fold them!
The best part of the weekend was that I didn’t feel invisible. Twice during our trip, strangers used kindness to let us know they could see us.
We were in Kansas City, so we had to have barbecue. We went to a highly recommended restaurant that was authentic with good food. There was a long line, and although we were making our way through with two power chairs and a slew of kids, it became apparent that it would be hard to find a seat in the crowded dining room.
We left my husband in line to finish the order, and went to grab an outdoor table. In the meantime, the managers were making room for our family, not something they usually do. It’s more of a first-come, first-served environment. We were already outside, which was the best place for our son Rowen, who also has an autism spectrum disorder. (It was very loud in the dining room.)
But their attempt said, “We see you. We know it must be hard to find room in crowded areas. So we want to help.”
It was so good to be seen. It was validating in its way.
It happened a second time the next day. We decided to go to a college basketball museum. The kids found it and read that it was interactive, which sounded fun. When we got there, the man at admissions didn’t charge us for our sons with DMD, Max, Rowen, and Charlie, who were all using their wheelchairs for the activity. We smiled and thanked him.
When we got inside, we realized that it may not have been the best activity for the boys because most interactive activities included playing basketball. Probably something we should have seen coming, but didn’t.
By not letting us pay for the boys, the admissions man said, “I see you. I realize it might be hard for them to enjoy this experience fully.”
It felt so good. It was everything I needed. A little bit of kindness went a long way!
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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haixin zhu
everyday is no easy, but read your word is the best part of day.
thanks