There are three Casten kids: Ava (12), Henry (11), and Ella (9). They each need our attention, and will ask for it periodically.
Our life is quite crazy. Lindsay is still recovering from the amputation of her lower right leg and is facing a complete knee replacement on her “good” leg. And we are still trying to figure out what to do with our modified van that keeps breaking down. Our current plan is to get Ella an e-fix system that would transform her manual wheelchair into a power chair. Then we could put the wheelchair in the back of a “regular” van and Ella would sit in a back seat with Ava and Henry.
Money is often a problem. I am an elementary school teacher and Lindsay is the director of children’s ministries at our church. Our combined income barely covers our monthly expenses, much less the special needs of Ella and Lindsay.
Although things are tight and a bit crazy at our house, we always find the time (and money) to spend with each of our children individually.
Earlier this month, Lindsay took Ava to a painting studio for a lesson. They painted seasonal gourds, spending time together and producing beautiful artwork. On a recent weekend, I took Henry to Starbucks. We enjoyed delicious drinks and warm pumpkin bread while we talked about school, work, and life in general. That same weekend, Lindsay took Ella to Dunkin’ Donuts for some tasty treats and coffee (for Lindsay). They were able to talk, laugh, and spend quality time together.
Our children are growing up. They have myriad things on their minds. They wonder what their life will be like in the future. They question how the world works and their roles in it. They ask about God and why things are the way they are. They often give us good ideas of ways to make our lives more harmonious.
An hour spent with each of them makes a difference. They feel loved, noticed, and appreciated.
Yes, things are tight and a bit crazy. But our children come first and foremost.
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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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