The Castens are a family of five: Mom (Lindsay), Dad (Michael), and three kids (Ava, Henry, and Ella). Ava is 13, Henry is 11, and Ella is 10. We have two dogs and a bunny.
I am a full-time elementary school teacher and have been working for the same school and at the same grade level for 20 years. I love my job because it allows me to help as many kids as I can to grow and to flourish, both academically and socially.
Lindsay has worked as our church’s director of children’s ministries for five years. She loves her job and always puts in her best. She is thrilled with the relationships she has formed with the children and the families of the congregation.
Ava, Henry, and Ella have always supported Lindsay in her job. Over the past year, we have talked about Lindsay resigning from her position, but we knew that her contribution to our budget was important.
Lindsay has had many health issues over the past five years. She had a complication with a simple foot surgery that resulted in a raging rare infection. Despite everything the doctors tried, and after 15 surgeries on her foot, she ended up losing the lower half of her right leg to an amputation. Her left leg, which took the brunt of the work to walk over the five years, required a complete knee replacement. Recently, she tripped and fell and tore ligaments in her left wrist. Despite all of these health setbacks, she continued to work faithfully at her job.
Lindsay and I recently talked again about her resigning to spend more time with the kids at their critical ages and to help her physically heal. We took a close look at our budget and found ways to cut back to help cover the loss of her income. The budget would be tight, but we could pull off something.
Lindsay spoke to our kids about her job. She discussed the pros and cons, and wanted to know their thoughts. After a long conversation, Ella, who had been quiet, said, “We don’t need the money from your job, we just need you.”
Sometimes Ella astounds us with her mature attitude when it comes to relationships and affairs of the world around her. She often comes up with ideas and words that express herself clearly and causes one to think.
Telling Lindsay that Ella and her siblings need Lindsay to be more present while at home despite the loss of some money helped Lindsay realize that resigning her position at the church would be a good thing for her. It will give her time to heal from her health concerns and the opportunity to spend quality time with the kids.
Ella has a lot on her plate for a 10-year-old girl. She has to deal with the daily strains of having spinal muscular atrophy type 2. She has to find a balance of what she can do by herself and what she needs help with. She has to battle with the feelings of being unable to participate in many childhood pleasures like her siblings do. She has to deal with a life full of medical needs, appointments, and procedures. When she steps out of her own world and into the world of another, she clearly emphasizes with the other person’s situation.
Lindsay resigned from her church job, and we set the new budget into play starting this month. As Lindsay grapples with the emotions of leaving a job she loved in order to heal in more ways than one, she is comforted by Ella’s words.
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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