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.
As soon as I woke up, my body revolted. My hip somehow fell out of place again, making each movement painful. It’s a bizarre situation for a caregiver to find herself in. I am not supposed to be the one who needs help. For me, caring and giving happens regardless of how I feel. As Jaycee grows, I see now how we can help each other.
Because caregiving can be, and often is, a full-time job, we need to understand that although great satisfaction can come from caring for a loved one, some outcomes can put the caregiver at risk as well. Like the tension on a piece of elastic, we can handle tension and frustration for a long time; but eventually, something has to give. Cindi Ferrini shares 11 self-care ideas for caregivers.
Jaycee is a person with Down syndrome. Not everyone with this diagnosis will be exactly like her. For World Down syndrome Day, I encourage you to get to know those around you who have Down syndrome. You may be missing out on an opportunity to meet a person who can enrich your life with friendship and love.
Even though our celebration of Valentine’s Day has passed, there are things we can do every day to show we love each other and care for one another. It is a choice, but it takes work. Being a caregiver for our loved ones with special needs can put a lot of pressure on our marriage. Joe and Cindi Ferrini share 10 tips to strengthen your marriage.
