Seasons help us to realize we’re not alone. We might still feel alone but we can see things differently and then change our thinking, and even our responses. We know everyone goes through “stuff” but sometimes we need to recognize it just happens to be our turn. The harder part is that we still have someone we are caring for full time, 24/7 added to the new hard stuff!
For families like mine, with an autistic child and my own ADHD and anxiety, Christmas is rarely “calm” or “bright.” In fact, it is often loud, noisy, and overwhelming. Our children get overwhelmed by the lights and the new items. We, as parents, get overwhelmed by all the mess and noise. There are so many sensory inputs flowing through that you feel like you are in a never-ending vacuum of noise. And, that doesn’t even take into account that I’m operating on just a few hours of sleep after leading multiple Christmas services as a pastor.
Ruth saw a bright future for herself. She didn’t have an exact plan in front of her. But at 18, she vaguely knew what she wanted in the future: a master’s degree, a husband, a job she enjoyed, and children. Emma was on another path altogether. When Emma turned 18, she was already enrolled in a school for students with more significant disabilities.
Zechariah, despite being visited by an angel, doubted what he had been told, and so Gabriel told him that because of this doubt, Zechariah would not be able to speak until his son was born. So, he became unable to speak, and therefore unable to communicate through speech. What did he do? And what does his story teach us about people who cannot communicate by speech, or choose not to, today?
There were young kids, teens, young adults, even his best friend, all playing together, learning and laughing. But, there was no sign of my child. I searching the parking lot where everyone was talking and hanging out with their families; not there either. Here is where most people panic. But, deep down I knew; look with the younger kids. It was there I found him, rolling down the hill, filled with that bold childhood laughter, having the time of his life. No pressure here. No one asking him to make quick decisions he had to worry about in that football game. There was only freedom and joy. I want him to be something he isn’t sometimes, but I’m learning to start finding the thankful in disability.
Raising kids with disabilities comes with its own set of challenges and reasons to be grateful. Because this is EA/TEF Awareness Month and our son was born with EA/TEF, my top ten perks of raising a child with disabilities will be slanted in that direction.
My entire life, literally since I was two years old, has revolved around caregiving. Therefore I assumed I was prepared for the challenges our family faced after my mother was diagnosed with dementia in 2008. That assumption proved correct until January of 2023 when Mom entered hospice care. Over the six months leading to her departure from this earth, advocating for her was all encompassing. I didn’t want, nor did I have time to learn hard caregiving lessons. With each passing day I became more grateful for how they drew and are still drawing me closer to God. And so, I want to share them with you.
I would like to drive up to some magical office building and order into a speaker, “Yes, I’d like to order an easy day for my family please.” Then my daughter, if only for a day, would have a fully functioning heart and lungs. Many healed in the Bible, while healed in a moment, suffered for long before. This gives me hope to press on another day, and to keep praying for the Lord and His healing.
Personal experience taught me that disability caregiving is a time intensive and worthy endeavor. It is emotionally intensive as well, filled with grief, fear, uncertainty, frustration, overwhelming love, and guilt. Caregiving is the hardest thing you will ever do, but it is also the best thing you'll ever experience, the holiest act you will ever perform, the purest love you will ever demonstrate, the most Christ-like sacrifice you may ever make.
