When It’s Hard

I was involved in a discussion with some mothers of children with Down syndrome the other day, and we were talking about the perception that our lives are much harder than they actually are. Somehow, there seems to be a feeling among many people not walking in our shoes that “I couldn’t do what you do!” or “I don’t know how you manage!” And no matter how much we try to convince people that our lives aren’t really hard, people don’t believe us. Which is oddly frustrating. I mean, it doesn’t seem like it would be, right? People think your life is hard when really it isn’t…no big deal, right? But it kind of is a big deal, because when people act like your life is difficult even when you insist it isn’t, it feels like they’re telling you that you don’t even understand your own life. Or, even worse, that you’re living in some sort of bubble of denial.

So it’s not a major insult in the grand scheme of things to have someone tell you that your life is hard…but it is a bit frustrating when you don’t feel the same way. I smile politely and let it drop, but what I really want to say is, “This is my life you’re talking about—please don’t suggest that I don’t even know my own life! Because I do…and it’s a really good one!”

Certainly, there are some parents for whom having a child with a disability makes life a lot harder. It depends on so many factors—the level of pain or difficulty the child is living with; the support system the parent(s) have in place, both personal and financial; the family dynamic with any other children; and so on. But for a lot of us raising children with special needs, parenting is hard simply because parenting is hard­—it has nothing to do with disability and everything to do with the fact that parenting is just very tough, no matter what your child’s needs. There’s a reason why they say it’s the toughest job you’ll ever love, right?

And really, that’s how it is for Chris and me. We have two children with unique needs, but all children have unique needs. Ours just happen to have unique needs that fall into neat little boxes of classification as far as the medical and educational communities are concerned. We have one child who is quite easygoing and one who challenges us every single day for many of his waking hours. We have one who eats everything we put in front of him and one who exists on bacon, potato chips, and goldfish. We have one who is pretty good at athletic-type things and one who excels more in a strange blend of creative/logical thinking.

But they just are who they are, and day-to-day parenting of them isn’t really any different from anyone else’s experience. It might seem to the outside world like Chris and I would spend our time worrying about the long term for Sam: How will we provide for him? What will happen to him when we’re gone? Will he ever be able to live independently? What about Chris’s and my retirement? What does this mean for us?

The reality is, we don’t spend a lot of time fretting over these things. We set up a special-needs trust to ensure that Sam will be cared for when we’re gone. And if he lives independently someday, great. If he doesn’t, great. Honestly, our whole view of what our golden years would be like changed when Sam was born. No longer did we expect both of our children to grow up, move out, and lead lives of their own. Now we realize that the future isn’t in our control, and there’s no need to sit and worry about it. We simply prepare our kids to be as independent as possible, and when the future comes…as they say, whatever will be will be.

But let me tell you when it is hard to be the parent of a child with special needs.

It’s hard when you find out that a local school serving children with developmental delays and autism—the very things your own two children have—is being cited again for staff cruelty to children, because someone caught on video the teachers physically assaulting a student and laughing about it while they did it. And you realize that the school will escape with a slap on the wrist, because that’s what happened the last time they were reported for abuse, just four months before. And in a five-year period, there were 35 police calls to the school and its sister schools for violence. And yet still, students with special needs are sent to this school.

And it’s hard when you know that similarly awful things have happened in your very own school district—once again to children with special needs. And one of your children can’t talk to tell you what goes on when you’re not around, so while you’d like to think that you’re safe entrusting them to the schools, in reality you just can’t be sure.

And it’s hard when you log on to a group for parents of children with Down syndrome in your state, and one mother posts a question: “Who do I report it to when I see a staff member abusing a student? I walked by one of the special ed classes on my way to drop my daughter off at her class, and I saw a staff member grab a boy by the hair and drag him.” It’s hard when you realize just how commonplace abuse—both physical and sexual—of people with special needs is.

It’s hard when you’re doing research for a side project about Down syndrome, and you learn the incredibly horrifying history of people with Down syndrome in our country. When you learn that some of the ideas about people with disabilities not so long ago weren’t really all that different from the ideas of Hitler back in the 1930s and 1940s.

It’s hard when, in doing that research, you learn that as recently as when you were in middle school, there were parents and medical professionals opting to allow babies with Down syndrome to starve to death instead of doing minor life-saving operations on them. When you learn that a sweet baby with Down syndrome died after six days of not being fed because the parents didn’t want him to have surgery to fix a feeding issue, and the medical professionals and courts agreed. No, this wasn’t a hundred years ago, it was thirty years ago—within your lifetime. In your country. That is hard to stomach. So hard that I had to just put down the damn books and walk away for a while. Try reading that and not picturing your own child, six days old and starving to death because his life isn’t thought to be worth living. It’s sickening.

And it’s a little bit hard when you’re at Disneyland, having a perfectly nice chat with a woman who knows your child has special needs, and she says, “You know, the problem with having the special ed kids in class with the regular kids is that it holds the regular kids back.” And you know this is utter crap based on the exhaustive research you’ve done on the subject, but you’re at Disneyland, wanting to enjoy Peter Pan’s Flight with your kids, so you just disengage instead of standing up for what you know to be true.

And it’s hard when you log on to a Facebook group for parents at your child’s school, and you see a bunch of them trying to get a child with behavioral issues removed…and a teacher, of all people, jumps into the discussion and says, “The problem is that they’re putting the special ed kids in with the regular kids. This will not stop until parents start speaking up!” (Although it gets a bit less hard when you tell that teacher that she should be ashamed of herself, because a teacher, of all people, should believe in her students—that we, as parents, believe in our kids, and we sure hope their teachers believe in them too! And then she blocks you on Facebook because clearly you hit a nerve. Good riddance, and all that.)

But all of those are relatively minor annoyances compared to what is really hard: seeing children face enormous battles that they should never have to fight. What’s really hard is seeing two of your child’s same-age buddies diagnosed with leukemia within months of each other, and watching their families grieve and fight as they help their children prepare for a grueling two years of chemo and treatments, wondering whether their children will be in the 80 to 90 percent of children who survive leukemia…or in the other group that no one wants to talk about.

The incidence of leukemia in children with Down syndrome is higher than it is in children without Down syndrome—that’s a fact. And so what’s hard is panicking every single time your child gets a petechial rash, which is often one of the first signs of leukemia. It’s especially hard if your child is prone to these rashes, as our Sam has been. That poor child has endured much finger-poking from a terrified mama wanting to see if the spots blanch when pressed, because if the spots blanch, then we’re all good! But wait! That one’s not blanching! Oh no! What about the other ones? Let me poke more of them!

It’s hard to worry about your own child facing something like leukemia, and it’s hard to watch children you love facing that. Children you’ve spent three years getting to know online—children whose mothers you’ve met and hugged and hung out with and shared tears and laughs with. Because no child should face cancer…and no mother should watch her child facing cancer.

To see two children in a small group facing this within a matter of months…two children and two hurting mamas….well, it is just too much. That’s when it’s hard and you want to crawl in a shell and not come out and face the real world, where bad things happen and there’s just not a damn thing you can do about it.

But then you know what lifts you back up again? What makes you realize you can’t go live in that shell because you’d miss out on the beauty? Seeing a group of Rockin’ Moms rally behind the latest child to fight cancer and his worried mom and dad. Seeing people come out of every corner of the U.S. (and even internationally) and say, “Let me help.” Seeing a local Rockin’ Mom offer up her guest room for the parents or for any of the family who comes into town, any day, any hour of any day. Seeing five local Rockin’ Moms show up at the hospital within 36 hours, armed with supplies and love. Seeing Rockin’ Moms from further afield donate thousands of dollars in a matter of two days to help cover the months of parking fees the family will accrue at the hospital over the next six months of inpatient treatments, as well as the costs of eating and, well, just living while their lives are shifted from their home to a hospital. Seeing Rockin’ Moms set up a calendar so that every week, the kids fighting cancer get care packages from other DS families. Seeing people who pray offer prayers for the children, even when they’ve never met them. Seeing people offer every bit of emotional support they can.

It’s amazing. It brings a beautiful golden glow to the edges of a horrible dark cloud. It reminds me that people are good, and that despite all the hate and anger swirling in the world lately, there are spots of peace and love and families coming together to support ones who are struggling.

If I hadn’t had a child with a disability, I could’ve missed the hard stuff. But I would’ve missed the good stuff, too. And the good stuff is so very, very wonderful.

Rockin' Moms in the Baltimore area showing up to represent one of our own who is fighting the big fight with her son. These ladies are simply amazing!
Rockin’ Moms in the Baltimore area showing up to represent one of our own who is fighting the big fight with her son. These ladies are simply amazing!

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