I am currently sitting at my kitchen table surrounded by various family members. It’s a relatively peaceful morning. Grace is home. She’s doing fairly well for her. She got home on St. Valentine’s Day at 6:45 PM. I promised her that we would not celebrate that holiday until she got home so all of us pretended that it was not Valentine’s Day for her sake. When I got the call that she was being discharged–on Valentine’s Day, I realized that not only had I forgotten to actually acquire valentines for my family, but I didn’t have cheese, chocolate, fruit, and gluten-free bread for our traditional Valentine’s Day fondue dinner! I, of course, ran around town like a woman with my hair on fire and made it happen. In the end, we celebrated St. Valentine’s Day how we always have, and Grace was tucked into her own bed at the end of the evening which gave my husband and me immeasurable peace and happiness.
Yesterday, one of my friends spontaneously invited me out for lunch. It was very last minute, and I was very excited to see her. Grace was home, and my daughter Milly is now a virtual student so she is home with me when her sisters go to their “brick and mortar” schools, as they say. We went to a rather quiet venue, but Grace needed to come home and take a nap afterwards citing that she found it overwhelming. She didn’t hallucinate which is excellent progress, and I’m glad that she was able to rest. I suspect that the low stimulus environment of the hospital lowered her threshold for sensory input. Once out and about in town, she found the noises, colors, people, and even the sounds of the fluorescent lights irritating and overwhelming. For now, she just wants to stay in the house.
I was moving at a good clip. I really was. I was feeling at peace, not looking to my left or to my right, and then I did what I should not do. I logged into Facebook and stumbled. I tripped and skidded on my face to a painful, grinding halt. So, what’s got me upset?
There is one primary reason I left social media behind. Grief. Well, and something else. I didn’t know what to say. Let’s be honest. People aren’t exactly honest on Facebook
Fakebook. I kind of wish someone would put together another form of social media and call it OpenFace (maybe it already exists), and all the ads on the side would be for therapists, therapeutic approaches, books, different kinds of support groups, links to NAMI and other mental health associations, perhaps different religious and/or spiritual groups, a variety of 12 Step groups, and anything else empowering and helpful that I haven’t thought of. Of course, the drug companies would be advertising their wares, and we’d all see some talking head cautioning us against priapism at least 12 times a day. On OpenFace, members would be encouraged to be, well, open about their lives. None of this: “Dig me in my string bikini! Doesn’t my ass look awesome?!” or “Check me and my bros out…we’re drinking in Cabo, smokin’ a few Cubans, just f*cked some chicks…it doesn’t get much better than this.” or “My two-year old is learning Mandarin! And, he’s tapdancing….AND he’s eating with chopsticks…AND he can tell the difference between Baroque and Romantic music!” or “Look at our pics from our latest trip to Switzerland! The kids had a ball! The wife and I hit the slopes, the kids ski better than we do now, and we even had a chance to visit some homeless shelters and teach the kids about gratitude. We had an epic time!”
On OpenFace, if someone posted something like that, their friends would quickly point out, “Ashley, I saw you in that bikini, and you totally photoshopped that picture! Why are you posting almost naked, photoshopped images to social media and then begging for attention? I’m coming over and taking you out for coffee…” or “Yeah, Steve, you got drunk in Cabo and slept with a chick, but you also caught the clap and she stole your wallet! Come on, man, you did NOT have a good time. You don’t need to pretend that you’re not pissed off that you spent all that money on a trip that went to hell. We all get it. Dude, let’s meet for a beer tonight.” or “Lindsey, your son is listening to Mandarin lullabies, but he doesn’t speak it. He hits you with your daughter’s tap shoes and throws his chopsticks on the floor. As for the music? I’m pretty sure you made that up because you don’t even know the difference. You hate classical music. There’s no rush! Cletus is a fantastic boy. Let him grow up in his own time. Leave the competitive parenting behind. Your friends love him, and your friends love you!” or, “Jake, take those pics down! You and Linda are separating. She tells all her friends that you haven’t had sex in a year, and you can’t stop flirting with every woman that you see. Your son has autism and wouldn’t have the physical ability to ski if a gold medalist tutored him for a year! Your daughter never left the chalet. For crying out loud! Just be honest!!! We care about you! Come over for dinner tonight! We want to be with the real you…not your false self.” That’s the thing. OpenFace wouldn’t be anonymous, and you could actually tell the truth. If you were having a bad day, then you could say it. If you were anxious or scared, then you could say it. If you were facing a crisis, then you could admit it. The number of friends we might have on OpenFace would probably be smaller, but I wonder if it might be a more authentic experience.
So, what leads me to say all this? A few people I know only communicate via Facebook messaging so when I stopped onto Facebook this morning, I read this:
“We’re going to Sweden this summer! Any advice?”
My stomach dropped. This couple, they take trips frequently compared to my husband and me. They have kids. They drop them off with grandparents and head out. We can’t do that. My husband’s father died 16 years ago, and his mother is…Faulkneresque. She’s not around. My father remarried in the 70s and got a new family. He’s long gone. My mother is…uh…not around either. So, it’s just us. We’ve never taken a trip together. Just the two of us. Ever. We dream about it, but now? Grace can’t even go to a restaurant without glazing over and requiring a Seroquel and a nap. I...sigh…
I went to Devon, England two years ago during the springtime. Alone. For ten days. It was magnificent and magical. I want nothing more than to bring my whole family back there to the estate where I stayed. I want them to meet that family that so graciously hosted me. I want Milly to see her godmother. I want them to marinate in the ethereal goodness that permeated that landscape. If fairies are real, then they live in Devon. Grace wants to go there, too. All my girls want to go and meet all the people I talk about. My husband aches to go. He hasn’t traveled abroad aside from living in the UK as a child. But, will Grace be able to do that? If she can’t even sit in a restaurant, how will she endure traveling? Traveling can be very hard on a psyche. The TSA anyone? Plane rides with crying babies? There are no guarantees that your trip will be peaceful not to mention adjusting to a new culture. I’ve traveled to many, many countries and even lived in another country so I seldom get culture shocked anymore, but that won’t be the case for a child new to traveling.
All this is to say that I’m grieved. Grace might be able to travel one day, but it’s more than that. My husband and I will not be experiencing that intimate trip alone. We have to stay behind and care for her because there is no one else who can fill in for us. Okay, I’m holding back; there is something more. This couple that is traveling to Sweden? In the past, they complained quite a bit about needing breaks from their children–their completely healthy, neurotypical children, and they had frequent dates and breaks to begin with. They only have two. At this point, I don’t get it. Perhaps I am losing my ability to empathize. I don’t remember what it used to be like anymore. I think it used to be easier. A lot easier. I have four daughters, and three of them have needs. Two of them have special needs. Grace has profound needs. I rarely get a break. My husband and I get a date once a month if that. When our kids were younger, we got a date once a year. Twice if a friend offered to babysit. I have friends in similar situations. There’s no money because it goes to paying medical bills, and there’s no one available to watch their child aside from a PCA. So, they are homebound with their special child all…the…time. It’s hard. Parents with healthy kids don’t understand. They take a lot for granted. Their vacations, dates, and free time. The fact that their child can even leave the house? That someone other than themselves, their partner, or a trained professional can care for their child? Grandparents? What I wouldn’t give to have healthy grandparents in the lives of my children. Oh, what a gift that would be.
Bringing this back around to Facebook…here’s the rub about a lot of those photos and updates. They don’t tell the real truth about us. That’s why I left Facebook. People don’t join Facebook to tell the truth. People join Facebook for a number of reasons but presenting an authentic picture of one’s life is most likely not one of the Top 10 reasons people are there. I know that there is a certain tacit etiquette that rules social media. No one likes a party pooper. No one wants to read depressing updates or even truthful updates. CNN has devoted articles to “The Ten Commandments of Facebook” (although many of these do need to be said for the sake of manners). Do you suppose there is a connection to the rise in loneliness and a sense of isolation people are experiencing today and this phenomenon of cultivating a false self? (Yep, there is! “Is Facebook Making Us Lonely?” Stephen Marche, The Atlantic) It takes a lot of courage to admit that you need help when you’re competing with perfect family vacations, perfect asses, perfect jobs, and perfect lives. Where on earth would you want to admit that you gave up on your diet and ate a stick of butter while crying over your ex-boyfriend? On OpenFace!
I know, it’s a fantasy, but the truth is I have these moments where I feel overwhelmed, and I wish that none of this had ever happened. I wish that I could click my ruby slippers and say, “There’s no place like home. There’s no place like home…”, and I would wake up to find that it was all just a weird dream. I would find that Grace was a normal sixth grade girl with her whole life ahead of her. We could make plans, call our friends in Devon, and put some money aside–all that money tied up in payment plans going to hospitals where Grace stayed last year. Alas, this is our journey, and I’ll walk it with as much courage as I can muster.
I cried to my husband today. I admitted that I was jealous of that couple who were going to Sweden. I told him that I felt angry because they seemed to take a lot for granted–their healthy kids and their family who so willingly steps in to love on their kids so that they can take their trips. I cried in public. I don’t do that. Ever. He just told me, “Baby, sometimes it takes adversity to help us see what we really have. You can’t really blame them, can you? It’ll be our turn one day.” That made sense to me, and it helped me let go a bit. I don’t feel jealous in the sense that I don’t want good things for others. I just want something good for my family, too, and it feels like we’ve had our share of adversity although I suppose we could have more. So, I’m thankful for what we do have. In truth, it could always be worse. We could be uninsured. Could you imagine? I bet some of you could.
I don’t know how to end my emotional rant. Part of me feels like taking a picture of my bum in skinny jeans and posting it just because I can. Just to be…cheeky. ::snicker:: You know what I’ll do? I’ll recommend a cookbook because that’s very Facebook-y. We are very busy so I like to use my slow cooker, but I really don’t like traditional slow cooker recipes: “Here’s a side of carbs with a side of carbs, some cream of mushroom soup, some cheese, and another side of carbs.” In the end, it’s just not very good. I recently discovered a stellar cookbook called “The Mediterranean Slow Cooker” by Michele Scicolone. We have made quite a few recipes from this book (we are even making one tonight), and they have all been excellent. No cream of mushroom soup here! So, if you like Mediterranean food, lead a busy life, and own a slow cooker? Give this book a go! (Here’s a secret…I used to live on the Med, and some of these recipes are pretty darn authentic!)