It may require some extra patience, but having kids around benefits all of us
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School is out in my area, and summer has officially started!
Living with SMA means that my independence is made possible through a network of practical, daily support from friends in my community, and caregiving is woven into nearly every part of my life. My volunteer caregiving schedule requires a little shuffling and restructuring during June and July, as everyone’s routines are different. Some friends are less available while others are more flexible, and it all works out eventually.
One aspect of summer caregiving that I really look forward to is having more kids at my house. My mom friends, who have school-aged children, know that they can bring them along when they come over to help me. I’ve created a special kids’ space in my living room with a box of toys, a basket of stuffed animals, and a shelf of beautifully illustrated children’s books, so they know they are not just welcome but wanted here. Originally, the expectation was that the kids would settle into their special corner and entertain themselves while their mom helped me do caregiving tasks.
The thing is, the more the kids spend time at my house, the more familiar and comfortable they become with the space, the activities, and me. They are no longer content to play with trucks and bunnies on the rug. Instead, they have noticed that their moms are doing important and interesting things with me — things they want to learn about and participate in.
Their vigilance and curiosity mean that they don’t miss a single thing. They ask lots and lots of questions and want to help with everything. Sometimes it can feel a bit overwhelming and even invasive, and I just want to say, “Why don’t you just go back to your designated play corner?!” But then I realize that, even though it might take longer, be messier, and feel uncomfortable, it is so important to give these little friends of mine an opportunity to participate in my care. They are eager to serve, and that should be encouraged.
And so, we think carefully and creatively about how to answer their question: “Can I help?” Filling up my water bottle, checking my mailbox, and throwing away bits of trash are things that even the youngest ones can proudly do. If we go for a ride in my van, older ones learn how to let down the ramp and push the button to release me from my EZ Lock. Several have discovered my household gadgets, such as how Alexa turns on the lights and which remote controls open my front and back doors, and they are very willing to manage these things for me. And I’ve been surprised by the perceptiveness of some who notice when I need help lifting my arm, adjusting a foot, or moving something out of reach closer.
While I get to enjoy the gift of some extra helping hands on these school-free days, I also see it as an opportunity — a gift that I can offer — for them to see caregiving as something that can be natural, joyful, and meaningful. Every small task they practice teaches them that paying attention to another person’s needs and responding with kindness matter. And if it takes a little more patience and grace on my part, I think it is a worthwhile trade, because I get to witness the seeds of compassion take root in the next generation.
Note: SMA News Today 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 other 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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This site 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 other 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.
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