I've said it before and I'll say it again: nothing, and I mean nothing, is as helpful for my wife and me as hearing tips from other parents. You could be the best damn pediatrician in the universe, the best neurologist, the best physical therapist, but if you're not living the life we are, doing the things we need to do with Tess, you just don't know as much. If you live the life, there's like a million tidbits you pick up, little things that help. Those aren't in any textbooks, you can't study this stuff or google it, it's just what you do, what you do to adapt, to make your life work, probably without even thinking about it.
For example, tell me what you're supposed to do with that friend. You know the one I mean. You've been friends forever, maybe since childhood. You go way back. And you call yourselves friends, but the truth is this: they aren't there for you.
You really need a friend. You need a friend now more than ever before, since you have a kid who isn't entirely typical, who's lagging behind their peers in terms of development. You need someone who's calling you, who wants good things for you, who's asking about your kid and what's going on, who doesn't wait to be asked for help, who just shows the hell up at your house and brings dinner, or takes you out for a beer, or brings a paintbrush and jumps right in with helping you paint your bathroom. That's what you need. But that friend isn't doing that. Instead, you discover that they've taken a powder. They don't call or visit. Even worse, maybe you find that they don't actually want good things for you. That, in a way that maybe neither of you ever realized over the course of your friendship, they've been sorta rooting against you. Taking some pleasure when things suck for you. So let's say you have this friend. What are you supposed to do, when you're in the thick of it, you have this one or two or three year old, and your whole life changes, because they have a rare disease, and now everything really is different?
You can't bring up the subject of this not-so-great friendship in a doctor's office, right? It's just not the place for that. And that's where other parents come in. But one of the bummers of having a super-duper rare disease is that you don't have a community. You don't have a Facebook group. You don't meet up with other parents. You're on your own. You gotta figure this shit out yourself. While your friends with typical kids are going to birthday parties at Chuck E. Cheese's, and taking their kids to their first rock concert, and enrolling them in guitar lessons, you're at home, teaching your kid--who's the same age as their kids--how to hold a spoon and hopefully begin to feed herself from a bowl of applesauce. Maybe, like Tess, your kid has autism, and so the very idea of your kid in Chuck E .Cheese's or a rock show in an arena, is enough to make you wake up sweating in the night.
For years my wife and I wished we had a group. We'd hear about other diseases that are rare, but not ultra rare, and about how dozens of families would fly to Atlanta, for example, to attend a massive meetup and conference, specific to their disease, to share info, meet researchers, and talk about the non-doctor's office stuff, stuff like what to do about the friend who secretly roots against you. There'd be ramps for everyone to have access, a bunch of food provided that accounted for the sensitivities of the kids, a bunch of medical equipment and provisions, to deal with whatever might come up in connection with their disease. In other words, these families got to travel somewhere and spend days surrounded by people who get it.
We hungered for that sort of meetup for us and our Tess. And it didn't happen.
But let me come back to that meetup idea. I realize I also need to come back to what to do about the bad friend. I have an answer for that one, at long last.
This past September, our family went to this race. It's put on by an organization here in Maine that I've talked about before. It's called The Robbie Foundation. It's named after a kid, actually. His name, as you might have guessed, is Robbie. And here's how that foundation came to be. Robbie's mom, Lynn, discovered when Robbie was younger that she needed things. Things that would help Robbie a lot but that aren't covered by insurance. And there was no way to get funding for those things. They're expensive. They're often medical equipment, which--if you think there's a markup on anything involving a wedding, you ain't seen nothing yet. Sometimes they're therapies, like therapeutic horseback riding, or speech-language sessions. Stuff that within one or two times of taking your kid there, you see real progress. These things help. But Lynn, Robbie's mom, realized that she and other families in Maine were unable to access those services and equipment. And there wasn't any organization to help her. So she started one. In her spare time. Which I can only imagine was approximately zero. But she did it. She didn't say, "Oh, I don't have time," or "I have too much on my plate," or "No one else will join me in this." She just started a foundation. And people responded. People saw what Lynn was doing, and they joined her. People like my wife Kate, who know how important this is. Who know that if there's no money, your kid doesn't get what they need. That's why Kate, when this race comes along, raises thousands of dollars to kick in to the coffers of the Robbie Foundation.
And this is what I've been realizing lately. If you're out there, and you're on your own, and you don't have a network, a well-established group of other families who are dealing with the same thing you are, and you find yourself needing something, then start that thing. Be like Lynn. Don't worry about who'll join you, or whether your idea will work, or whether you have time. Just start it.
We've needed a community about USP7, and we've been waiting for Baylor to let us in to the group. To test Tess's mutation and connect it definitively in a lab, to make certain that her USP7 mutation causes the symptoms we see. But we didn't want to wait. So we didn't. For those of you keeping track at home, we are now up to 12 USP7 families. A new one surfaced last week. Of the 12, five of us families have formed a group on Facebook. Two groups, actually. One is the public face of USP7. If you search for USP7 on Facebook, you'll find that public group. But there's a second group, a private one only for families, where we can talk about whatever we want, and not worry about who'll see it.
For example, one child is much younger than Tess, and her folks think she might have hip dysplasia. That's what Tess has. It means that her femurs, the big-ass bones in her thighs, don't fit into her pelvis properly. That ball-and-socket joint isn't lined up, so the ball is out of the socket and won't stay in. Makes walking pretty damn hard. That's why Tess had multiple hip surgeries, to get those suckers in place. She wore what's called a spica cast, a hard cast that went from her armpits down to her ankles. (Side note: one thing other parents told us who'd been through the spica cast--get a $20 beanbag chair at Target, so your kid can sit in it while they're in the cast. It'll help your kid and give your arms and back a break.) Anyway, my wife and I find in telling these other parents about what might be in store for them with their kid's hips. It's pretty convenient to be able to find Tess's medical records from her surgeries, from her visits to her orthopedist, and upload those records and share them with that other family.
That's the kind of stuff we share. We exchange stories, records, files, videos, whatever. It is awesome. The relief of having each other is unbelievable. It's not a meetup, but it's the next best thing. And we fully plan for it to result in real-world meetups, no matter what happens with Baylor and their testing, even if they conclude that none of us formally belong in future USP7 studies.
The Facebook group reminds me of that part in the movie Jerry Maguire: when Tom Cruise's mission statement reveals the future of being a sports agent--fewer clients, more truth. That's what our group is. Fewer likes. More truth. And it's way fewer likes. Like, only a handful. Three or four. But the difference is, you know what each like means. It means that all three or four of those families read your post or file or whatever. Not at a stoplight. Not sort of skimming the first paragraph and then moving on. Actually read it, from beginning to end. And then read it again. And sat with it for a while. And talked about it with their spouse. And later on, found themselves reading it a third time. There's no button for that. Like doesn't cut it, and neither do any of the other new emojis from Facebook. But those likes mean something. There's more truth there.
Which brings me back to the friend. Or so-called friend. The one who doesn't want good things for you. Who isn't rooting for you. And I'll tell you what other rare-disease parents told me a while back, and I listened, and I did what they said. Take that friend and cut them loose. Not in a big F U ceremony or anything. Don't even tell them that you're doing it. But if they aren't with you, then don't invest time or energy in them anymore. This is hard enough, what you're doing. It's hard enough if you have a dozen friends who are all rooting for you. Once you cut out the nonfriend friend, you'll be amazed at how much better you feel. How much more energy you have. How you're able to focus more on the people that matter to you. The people who want to help you.
Leave the nonfriends behind. Gather your tribe. Figure out what you need. And if someone else isn't making it happen, then do it yourself. Start something.