Raising children is accompanied by a list of never-ending tasks. The to-do list is never finished. When our child (or adult) has complex developmental or intellectual disabilities, the list is long. We are expected to work a full-time job, maintain the home, transport our kids to countless therapy and medical appointments, along with school and homework, and make sure our family is fed at least one balanced meal. (One that doesn’t include someone asking if we would like fries with that.) Did I mention the laundry? Well, that never ends too. It is a lot. It can feel overwhelming and impossible. We then turn on the television or open our social media to catch a moment of normalcy, only to be bombarded with memes, commercials, and reels taunting the importance of self-care. Everyone is preaching to us to fill our cups first, and we must learn to manage our time better and ask others for help. We put a checkmark beside GUILT on our mental list of inadequacies as parents, employees, and partners.
How do we make it work? How can we take care of our partners, children, job requirements, our homes, and have anything left for us? How can we be expected to be our child’s therapist, nurse, parent, Lyft driver, maid, personal shopper, and take impeccable care of ourselves too? The truth is, we can’t. The pace is not sustainable, but how do we change things? Many of us do not have a network of support or respite workers. The supply of qualified care is short, and the demand is great. Some parents, especially in rural areas, do not have access to agencies and services to provide support. Many do not have money to pay for caregivers to provide respite.
The effort required to create time to care for ourselves can be taxing and exhausting, and we have no energy to even attempt it. Many parents give up even trying. I spend many hours procuring care for Emily and making plans for her. She gets so bored being with me. There are days when all she does is whine for hours. She protests in her own way being stuck with me. Those days are often the most difficult (and also why I keep a pair of noise-canceling headphones in my possession).
I am persistent enough to keep looking for caregivers to not only provide care for Emily but who are willing to entertain and engage with her. Emily loves having caregivers that are closer in age to her. She wants to engage in the typical activities of a young adult. Go out shopping and go out to eat. She wants to be on the go and out of the house. I get it. She is twenty-two and ready to groove. I am also flexible and know that sometimes caregivers will cancel or be unavailable when I need someone. I adjust accordingly and get creative.
I don’t let the difficulty of the task deter me from trying. My sanity depends on me getting breaks. Little breaks daily and longer breaks whenever possible. Caring for Emily 24/7 is exhausting and often not rewarding. I do it because I love her and want the best for her. I also want the best for me too.
Even when I cannot get away from caring for Emily physically, I can mentally. There is no excuse for me not to give myself some respite every day. Even if it means I daydream that I am on a beach in Greece, soaking up the sun while staring out the kitchen window as I wash dishes. It can be dancing around my living room with reckless abandon as Emily looks on with amusement and maybe even a giggle that makes my heart smile. Self-care can be seeking a moment of gratitude in the most challenging tasks. (These usually involve excrement of some sort. Oh, the joy!) I take a moment. I am lucky to have a washing machine and hot water. I am thankful for gloves and a handheld shower sprayer. I am grateful for sheets and diaper wipes. Oh, how many times I have expressed gratitude for diaper wipes! Someone told me once that even when you cannot take care of yourself physically, you can always care for yourself mentally. I find a way to nurture my mental well-being every single day.
Everyone around us is screaming for us to take care of ourselves. If we don’t, we will burn out. We feel guilty if we do it. We think caring for ourselves means we must stop caring for our loved ones. That can feel true. It is also true that we can find ways to nurture and care for our souls while we are caring for our loved ones. We can learn and practice escaping in our minds. Remember daydreaming? We take a break in our souls. We take a few minutes to pause, breathe, dream, and create the feeling of calm or joy we desire. It isn’t as hard as we make it. Think about someone or something that makes you smile. Picture a giggling baby, a kitten, a puppy that befriended a duckling (I just saw this and it made me feel happy), a loved one that made you feel loved and nurtured, or a bird singing outside your window. The sky’s the limit! As you picture something in your mind that makes you smile or feel good, notice a sense of calm creep in. It might be fleeting, and that is okay. Every time you take a minute to change your emotional state from the inside, it will begin to improve on the outside. I do not live a life where I can physically care for myself whenever I want, but I can always take a moment to find something to be grateful for in a moment of struggle. Sometimes, it might just be letting out a long exhale. Oh, the beauty and joy in the exhale.