Epilepsy affects everyone in our family. Of course, the only one who suffers from actual seizures is Mira, but the path that she has been traveling on for the last 11+ years has taken our entire family down a very tumultuous road at times. We still have our joyous and happy moments as a family, but having a child with a catastrophic epileptic syndrome is often very difficult to deal with, day in and day out. Sarah, Eli, Jonah, and myself all have our individual coping mechanisms when days get rough with Mira. Trying to develop and exercise those coping skills is very important in trying to maintain balance.
Mira cries and some days, she cries a lot. In many ways, she functions at about a 2-3 month old level, which can be exhausting, when you area trying to raise a child that never really progresses beyond this stage of development. It has been the equivalent of raising an infant, for 11 years. In other ways, she does make minor progress - progress that isn't necessarily measurable on a neutotypical development scale. Her patterns of irritability are unpredictable and you have to do your best to take them in stride. When we are noticing an uptick in her fussiness level, we typically start asking why or investigate what has changed (if anything) in her patterns, which ultimately leaves everyone frustrated, because there usually isn't an answer that we can pinpoint. There is no 'why'. There only 'is'. Mira cries and 95% of the time, we have no idea why. Eli and Jonah both ask the question, nearly every time she gets upset and I never have a tactical response that helps ease their anxiety and often, their frustrations with her.
Like Sarah and I, the boys become exhausted at times with her, which is totally understandable. We live in a small, 1,700 square foot house, that only has so many rooms to try and create distance from Mira's crying. Thus, one of our major coping mechanisms is a box fan. Ironically, box fans have had a significant impact on Mira's sleeping patterns. (You can read this very brief post to understand what I mean). Mira has been sleeping with a box fan in her room for the last 10 years, and nearly every single room in our house, has a box fan. Whenever Mira gets irritable and we have run out of options, she ends up in her bed, with a box fan going for white noise, but again, since our house is so small, the boys will revert to the kitchen or their respective rooms, and turn on their box fans. I think our family coat of arms or crest would involve a box fan. The noise is wonderful tactic to help create some background noise to help us all cope with the crying, when it happens.
Granted, when the weather is nice and time permitting, Mira loves to go on walks outside, and I am always happy to take her out for a stroll. Getting outside for a change of scenery and some fresh air, tends to help Mira's irritable disposition. However, when we can't get out, we try to do 'laps' in the house in her chair, which is the near equivalent of going for a walk outside, minus the scenery, the fresh air, and changes in elevation. Ok, it's a mediocre consolation, but at least she is in a constant state of movement, which is what she is typically craving. Since we have hardwood floors throughout the house, we developed a walking 'track' through all of the rooms, in large figure-8 pattern, from the living room, through the foyer, into the kitchen/dining room, and back again. In the thousands of laps we have walked in this pattern, I've only managed to gouge the kitchen base cabinets with her chair, on two occasions. That's a pretty solid track record, every pun intended.
Coping mechanisms can take on any number of forms in our house and they don't just revolve around Mira's irritability. Transferring, bathing, meal preparation, and diaper changing - the routines that Sarah and I do with Mira, often multiple times a day, are exhausting in itself. We often tire from the physical labor that is required of us on a daily basis, and by the time dinner is over and the kitchen is clean, we are looking for some down time just for ourselves. There tends to be a fair amount of physical coping, whether it's laying on the couch and squeezing in a nap in the middle of the day (a method I have perfected on the weekends) or just vegging out on the computer for a half-hour. It can be something simple.
When it comes to coping mechanisms in general, my attitude is this: whatever works to help maintain your physical, spiritual, and mental health, in being able to get up the next day and prepare to do it all again. Raising a child, with special needs or not, is challenging. Add to it the physical and emotional demands of a child (or children) with debilitating issues, you recognize and openly invite, those seemingly minor moments throughout the day, that keeps everything in balance, and helps maintain perspective.