I Just Want to Just

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.

Loving the Mentally Ill

I’ve written, deleted, and re-written this blog for months. It’s a tough subject, and it’s hard to be honest without offending, or encouraging while still being truthful. But in light of everything that’s being said about the recent suicide of a beloved actor, I need to write this. Again.
You see, not much offends me. Things anger me, confuse me, sadden me, sure. But not a lot hurts my feelings. But I’ll say it: I’m offended at some of the reactions to the death of Robin Williams. Straight-up offended. As if it’s our place to pass judgement on a man’s death. As if our opinions on the circumstances surrounding his life and death hold any weight. As if our own experiences give us any modicum of expertise with regard to the experiences of another. I’ve seen a lot of people who claim they overcame depression, so someone else should be able to, as well. As someone who has battled depression and anxiety for decades, I still have no ounce of justified judgement towards someone fighting a similar battle. I’ve seen even more complete misunderstanding and disregard for mental illness. The fact is, depression is an illness. Sometimes it’s temporary, like post-partum depression or seasonal affective disorder. Sometimes it’s based on circumstances, like bills or illness or difficult relationships, and can thus change with the situation. Sometimes, though, it’s chemical, it’s through no fault of the sufferer, and it’s STRONG. Chemical depression CAN be overcome with prayer, but just because it isn’t sometimes doesn’t mean the person suffering has no faith. It doesn’t mean the person is weak, just as requiring insulin says nothing about a diabetic, other than the fact that they’re diabetic. Depression is a symptom of a chemical imbalance that must be corrected and observed constantly, or else it will quickly overwhelm. Depression is an ILLNESS, not a choice, not a lack of appreciation or contentment, not a weakness or a fault, and it most certainly is not selfish.
Ahh, selfishness. This is what so many of the judgements I’ve seen seem to get caught up on. The selfishness of the sufferer who chose to end their life. Does suicide affect so many more people than just the one who decided to take their life? Absolutely. But how quick we are to forget that mental illness affects the family and friends of the sufferer in life, not just in death. How quick we are to dismiss the suffering of the depressed or mentally-ill person. I’m not here to argue the theology of suicide, nor do I believe that death by one’s own hand brings about a poetic release or freedom, but I will say, LOUDLY, that mentally ill persons do not think logically. We can think logically, yes, and using our working, non-muddled-up brains we can look at the circumstances surrounding someone’s suicide and decide that it wasn’t worth it, it wasn’t that bad, or they were selfish cowards. But just because something doesn’t seem to make sense to us doesn’t make it untrue. Just because you’ve never been so overwhelmed by darkness that you thought death was the only life for you DOES NOT MEAN it did not appeal to someone else. In discussing mental illness recently with a friend, she said that mental illness “gummed up” her brain, and it was the best description I’ve heard yet. Your brain may work, firing on all pistons, using logic and reason and recognizing cause and effect and multiple escape routes. But a mentally ill person’s brain does not. I need glasses to see clearly and you may not. This does not mean that because I need help to see, your eyes are better than mine. It means I need help to see.
I’ve lived my whole life with mental illness in the form of a bipolar mother. Is it hard? YOU BET. Do my struggles with her illness change her? In no single way at all, ever. It’s been a long road, and a very difficult one. Sometimes she does things that just make no sense… but they don’t have to. Just because I cannot empathize with her suffering does not mean her suffering is any less real. My confusion does not heal her. My frustrations do not heal her. Even my hurt does not heal her. Because SHE CANNOT HELP IT. No matter how much I want her to not be mentally ill, it won’t change the fact that she is, so I can either love and embrace her as she is, or I can live life constantly disappointed. A few times, in her darkest of days, she has even tried to hurt herself, and as a young girl who did not understand mentall illness, I was offended. My feelings were hurt, I was mad, and I thought her selfish. But just as a thirsty person will drink, a mentally ill person will do what their body is telling them to. Someone with Tourette’s or Parkinson’s cannot control every movement their body unwillingly makes any more than a mentally ill person can control every thought or action they take. Cop-out? To someone who does not have understanding or empathy with regard to mental illness, maybe. The fact remains that no matter how hard it is to love someone who is mentally ill (and it’s okay to admit that it’s hard), our suffering does not negate or outrank theirs.
Robin Williams, specifically, also dealt with addictions many times during his life, further proof of his suffering, his inability to control himself, his inability to behave like a “normal person” or think clearly. Robin Williams suffered a great deal more than any of us will ever understand, even those of us who have battled the demon of depression and stepped back from the ledge just in time. The truth is that we don’t know what he was going through. We don’t know what he thought or felt or lived or saw. We do know that he made us laugh and cry and quote a lot of movies, and we should be grateful for the impact he had on our childhoods. But we should not and CANNOT pass judgement on the very last choice he made, no matter how much that choice hurts us. Because it hurt him, too. Because it may have been, in his gummed-up brain that just wouldn’t submit, the only choice he had.

***EDITED TO ADD***
If we continue to publicly pass judgement and name-call those who are suffering from mental illness, especially those who are no longer alive to explain their pain, we will make it even harder for someone who needs help to have the courage to speak up, reach out, and get what they need. Stop making it NOT okay for someone to suffer. Have some sympathy and maybe save a life.