It’s been a hard day.
It’s been a hard week.
I’m texting with a friend who’s been having a hard month.
We both have kids who, for different reasons, have special needs, and it is EXHAUSTING. Don’t get me wrong, any parenting of any child is exhausting. But there is a different kind of fatigue I’ve come to know since I was introduced to the “norm” my children don’t fit into. It’s an ongoing fatigue, with no promise of anything ever getting easier. Today was difficult, and tomorrow likely will be, too. Today I worked my butt off to maintain a sense or normalcy or to meet my child’s unique needs, and it will do little to affect tomorrow, so I have to do it again. And again. I can never just…. JUST. I can’t just drive through a fast food restaurant and feed my children anything from the menu. I can’t just send my child to school and expect the day to go well. I can’t just take my child anywhere and expect it to be uneventful. I can’t just watch a kid’s movie with any deaths or sad moments (so scratch every single Disney movie ever). I can’t just watch Shark Week. I can’t just Google an answer and have the question be finished. I can’t just eat at any place in the city, can’t just accept offers of casseroles when I’m ill, can’t just enroll my child in school or watch him play soccer or introduce him to someone new or go anywhere without needing a bag for an EpiPen and Benadryl. And with the limitless access we have to blogs, and the freedom we have to write them, we’re given the unique opportunity to get a peak into the lives of other families that may not look like ours… or to feel understood by families who look very similar. I’m not alone. WE’RE not alone. There are many, many parents who, despite their beliefs or location or socioeconomic standing, all want one thing.
Parents of kids with allergies. Parents of medically fragile kids. Parents of premature babies. Parents of kids fighting cancer. Parents of kids with autism. Parents of kids struggling with their identity. Parents of kids with emotional disturbances. Genetic disorders. Mitochondrial disorders. Eating disorders. Sensory processing disorders. Mood disorders. Attention deficit disorders. Kids with IEPs. Kids with diabetes. Kids with developmental delays. Kids who can’t travel anywhere without a piece of medical equipment attached. Kids who can’t travel anywhere at all. Kids who fight authority and kids who will likely never live alone. Kids with below-average intelligence and kids with above-average intelligence. Kids who teachers don’t “get” and kids who doctors can’t help. Kids who get stared and parents who are judged.
Parents who are misunderstood. Parents who are exhausted. Parents who feel isolated. Parents who spend their free time on research and their savings on co pays. On weighted blankets. On medical strollers. On home healthcare nurses. On surgeries. On treatments. On medications. On conferences. On books. On organic ingredients. Parents who have cancelled plans more often than they’ve kept them. Parents whose schedules are mostly ruled by their kids’ needs. Parents who have hung their heads in the gaze of disapproving strangers. Parents who advocate and fight tooth and nail to keep their child from falling between the cracks. Parents who never imagined their life as it is now. Parents who just want to JUST.
Just want to eat at a Chinese or seafood restaurant. Just want to be able to leave the kids with a babysitter. Just want to spend a few dollars on something for themselves. Just want to see their friends more than they see doctors or therapists. Just want to be able to leave their child alone with their other children. Just want to walk through a store without bringing attention on themselves. Just want to enjoy their child’s laughter without the interruptions of medical equipment beeping. Just want to hear their child laugh at all. Just want to go through a day without fearing – or getting – a phone call from the school. Just want to fill out paperwork without needing extra room for all of the conditions or medications to be listed. Just want an answer so they HAVE a condition to list. Just want to be able to meet new people without having to explain anything. Just want to know that the school is meeting their child’s needs. Just want to not live in fear. Just want to dream and plan for the future. Just want to be able to attend birthday parties. Just want their kids to make friends. Just want their kids to see how amazing they are. Just want the rest of the world to see how special and loving and wonderful they are. Just want to know that it’s going to be okay.
All parents want some silence from time to time. All parents want to pee alone, go on a date, and have a healthy child. All parents want different versions of the same things. But some parents, just for a little bit, just want to JUST.
Yes, there are plenty of parents who struggle with situations “worse” than food allergies or high IQ. But that doesn’t make the very real difficulties of parenting kids like mine any easier. We’re grateful to know our kids, grateful to have been trusted enough to care for them, grateful for the access we have to modern medicine, alternative medicine, doctors and forums and blogs and therapists and support groups. But we’re tired. And sometimes we want to just JUST.