Several nights a week I am a worry wart. The nighttime worry ritual begins as I physically begin to feel exhausted. My eyes get droopy and it takes me longer to finish a chore I should have done hours ago. I always hope I can get through the remainder of the evening without letting anxiety take over. It rarely happens though.
I head to bed with the final thoughts of my things-to-do list that I have mentally written for the new day. I slide into bed saying a bunch of prayers to guide me for tomorrow, close my eyes and wait to drift off to la-la land.
Sleep should be the next logical step. It probably is for the majority of people but it isn’t for me. I find myself tossing and turning, wondering and worrying instead of slowly fading into slumber. My mind races toward a finish line that doesn’t exist. All I “have” to do next is sleep but I can’t.
What keeps me awake at night for hours on end? I’ve done as much as I could possibly do all day long. I’ve transported multiple children to multiple outings in opposite directions. I’ve made countless meals and snacks while filling sippy cups and SIGG bottles. I’ve measured medications and wiped boody bums throughout the day. I don’t get to sit in one place too long and can barely eat my own meal before bits of it are being requested by my children. Why am I suddenly in mental overdrive while my tired and overrun body is achy from taking thousands of steps over toys, around children and in between hugs and high fives?
I worry about what I could have done and what I can do about that. I worry about why this and why not that. I worry about who should have done that to prevent this while figuring out who I can ask for help to clean up the mistakes made in the first place. I worry about money and where it has to go and why it’s so quickly gone. I worry about the typical kids running around me and if they “get” why Mommy is such a freak as I read everything there is out there that includes anything to do with seizures, mito disease, special education, therapy and autism. I worry that I sometimes don’t worry enough and then I worry that I worry too much.
‘Good night, Cat’ would be the nicest thing to hear at the end of one of my days. ‘Shut up and close your eyes…and your brain’ is better advice. It could relieve the nightly anxiety. Once, I did try to go to bed as soon as I was tired. I tucked myself in at 6:03 pm. Steve did the dishes and did the bedtime routine for the kids. I thought I was going to get the best pre-parenting nights’ sleep ever. I was sadly mistaken when I woke up “for the day” at 7:15 pm. I was up for hours trying to get tired again and had another night of horrible sleep
Since I can’t go to bed at 6:03 every night only to wake up a little over an hour later, I need to figure out how to turn my nights into the ones I used to have before Ronan got sick. The kids’ bedtime was calmer, my evening of relaxation was longer and I actually looked forward to the next day feeling refreshed.
I would love to go back to the mindless prime time TV watching I used to do. It sounds so trivial but I would love to sit down and not worry about life for a few minutes. A long time ago, when the today was tucked away with the tomorrow far enough away to enjoy the tonight in front of me, I would channel surf. Ahhhh, the sheer joy of watching nothing and for no reason at all except to be entertained. I can barely remember it but I know it existed. It doesn’t sound very productive but it didn’t need to be. I wasn’t an advocate for my son back then. I was just his Mom. I wasn’t learning about therapy or the world of politics and how it affects my son’s future. I was just a girl living her dream of being married with children. I used to melt into the couch and watch HGTV, TLC, MTV, E! and whatever was in between. About two years ago, when I have had a chance to sit down with the remote control, I would look at that stuff on TV and turn my nose in its general direction. People were still acting, still singing and walking down red carpets. They were glitzy and glamorous. New seasons were the talk around the water bubbler the next day. The public wanted to be like their sitcom idols and changed their hair styles to do that. How did their warped reality become such a grudge for me? Don’t they know what’s going on in the world with autism? Shouldn’t they be forced to feel the urgency in our families’ futures? Don’t they care that I don’t get to enjoy the simple things in life anymore? And, how dare they flaunt the extravagant and audacious in front of me now?!
Mindless TV watching is something I’ve scheduled in. I put the TV in my bedroom to force myself to take a break from researching. I wait to read an article I thought I “needed” to read for another day. There is no anxiety while I have the TV on when I clean up after a long day. I have something to listen to instead of letting my thoughts drive me over the edge of darkness. I watch shows that have nothing to do with medicine or education. A reality show full of utter stupidity or a slap-stick comedy grabs just enough of my attention to remind me that while I’ll always be the Mom of Ronan, I’m also the girl I used to be: silly and carefree. There are a whole lot of new adjectives to describe me but I miss those two the most.
I have four healthy children who do normal activities most families do. That adds to the financial anxiety I have. Team sports, music lessons, the once-in-a-while fast food meals cost money too. Add in Ronan’s therapy that the insurance company won’t cover and we’re in a pickle! Working on learning how to manage the money we don’t have while making the money we do have behave better has been an issue for me. I can’t help but worry about that part of life. We’re working on the baby steps of a major budgeting program and we are actually making some financial strides forward. This change will, I hope, lessen the worrying I do.
My other children have me worrying to but for countless other reasons. They are so strong willed. However, they are also so eager and able to help their brother. They watch as Ronan struggles to say one word. They are so proud of him when he does finally say something. It’s as if my ears weren’t good enough to hear him when I get the full report with jumping and clapping little people dancing, “Ronan just said juice!” They watch him work with his instructors and therapists and have the same excitement in their voice as I do when I retell his victory. My typical children are not on my worry radar as much as Ronan is. There is more of a fond wonderment about them. I wonder if they’ll always be quick to help Ronan or begin to find him annoying. I wonder if they think he’s going to “grow up” like they are or see him as a burden if it’s their turn to take care of him when he’s an adult.
Even though I am anxious to end the kids’ day so I can finish my own, I have mixed emotions as I tuck them in. Will everyone sleep through the night? Will I get everything done? Is it normal that I can’t wait for night to fall to chuck these kids in their bedrooms until late tomorrow? Each night as we begin the kids’ bedtime routine, we share stories, read a book and start prayers. I hear, ‘Mommy. Mommy. Mommy,’ as the kids say their intentions. I didn’t realize that they were truly praying for me until Christmas when I made a greater effort to enjoy the holidays. We had some major disasters right before Christmas that had me reeling. I harbored feelings of resentment, anger and despair. The kids picked up on it quickly and must have put their rally caps on for me. Every night, even if I’ve yelled or hollered, taken away privileges or denied a special treat due to their actions or my own bad mood, I am still a prayer request for at least one of my children.
I am thankful for this because anxiety is no fun picnic. I wish it had skipped over me and attacked another human being. I’ve got so much and then some to take care of. Controlling the feelings and the overwhelming emotions that come with it are sometimes worse that the actual, physical events right in front of me. I know I will be able to work through the anxiousness of some situations I face. I am willing to learn strategies to help me get through the other situations too. This journey has been full of high roads and low roads. I would prefer there to be high hopes and no low emotions. If I could change the worry wart in me to a peaceful parent, how much easier life would be! I hope for peace in the midst of the daytime storms and restful sleep to refresh me for the next day. I wish for that peace to surround Steve, my children and your family too.
Cathy Jameson is mother of five all the time, advocate to Ronan full time. She runs the Age of Autism FaceBook fanpage in her spare time.