Dispatches from The Land of Not OK

Hello Land of OK,

You may not remember us. Or maybe you do remember us and wonder why we don't come to visit more often. Or maybe you don't know us well enough to realize that we've moved.

We were your neighbors once. We lived on your streets and went to your schools and passed by you as we both rushed to work. Do you remember? We were alongside you, cheering and mourning the outcome of sporting events, as if they mattered. Or discussing the latest TV drama or celebrity scandal, as if they mattered. We used to think, like you still do, that a "bad day" was when we had a fender-bender or a burnt dinner. You know, minor, but ultimately fixable problems.

We moved to the Land of Not OK when a truly Bad Day happened. When a problem came along with no solution. When we Lost something. For good. On that day, we realized to our shock and horror that there was no way to walk back through the gate that had slammed behind us. We threw ourselves against the fence for a while and frantically searched for a way back to the Land of OK, but there was none. We were stuck here in the Land of Not OK, even though we still had OK air in our lungs and OK dirt on our feet. It took us a long time to accept that we live here now.

Things are colder here, grayer. But you know that. You've come here before, for visits. It was during those extra 30 minutes when you realized your husband should have been home by now. Or that time the doctor told you bad news that turned out not to be true. Or that brief jaunt through as you watched your youngest take a bad tumble. Your visits usually ended with a big sigh of relief and something along the lines of "Everything's going to be OK."

We remember taking vacations here, too.

Don't get me wrong. It's not as though we can't come visit the Land of OK now and again. In fact, it seems the longer it's been since the gate closed, the longer the visas we are allowed to the Land of OK. Sometimes we get such long visits that you might even think we found a way to move back. But until there is a cure, or we find a way to raise our loved one from the dead or some other way to erase our Loss, we do have permanent residency in the Land of Not OK. We often have to go back for anniversaries, or when we see an OKer who resembles us before our Bad Day, or even for no particular reason at all.

Since you can't possibly know what it's like to live here until you do, there are a few things we'd like you to know about the Land of Not OK. First off is that we are jealous of you OKers, that's true. But that does not mean that we wish you had to live here, too. We are genuinely happy when you get to go back home from your brief visits. But we also don't particularly like tourists because they show us what we don't have and make thoughtless comments about how awful it would be to live here. And we really hate ex-pats: people who are actually OK but like to pretend they're not.

We also want you to know that you aren't any better than us because you live in the posh surrounds of the Land of OK. Neither are we particularly "brave" or "good" or "strong" because we toil away in the Land of Not OK. We didn't choose to live here any more than you would have. Your number could come up just as suddenly as ours did.

We also want you to know that for every time you get to leave, grateful that things have turned out OK, someone else — someone just like you — is here. Someone whose husband never came home. Someone whose doctor was right. Someone whose youngest isn't OK anymore. There's no need to pity them or even mourn for them, but just be aware of that and be respectful of their Loss.

You might have heard stories around the Land of OK of people who say they fought through the gate and found their way back. You might wonder why we can't be like them, too, and come back to stay. Well, the fact is that these people are either lying or naive. They are selling something. Or they are Not OKers on a vacation, unaware that they must return from time to time. Or they are OKers who went on a trip through Not OK but found a solution to their problem and got to move back.

Here's how to tell the difference: Not OKers' Loss is permanent, irreparable and burdensome. You OKers do understand the difference, but sometimes you forget because it is simply impossible to imagine in the Land of OK. Look for it the next time you say with relief: "Things are going to be OK." The opposite of that is that "Things are not OK." That's us. That's where we live. In the Land of Not OK.

So, until you can be equally comfortable with both OK and not-OK outcomes yourself, don't try to convince us that not-OK things are actually OK. You know the difference, and — even though we are looking at it from the other side of the fence — so do we.


  1. Ah yes - we are in this land too. But it is OK. Really. Well, kind of. It's liveable. But I especially like the part about visitors - or folks with "close calls" - I don't wish them here, but I sure am jealous.

  2. I live in the Land of Not OK as well. I loved this post so much. I do try to take visits to the land of OK but they always seem to be short lived. At least I have really good company in the Land of Not OK :-)

  3. Fer: I think your daughter's brain injury is Not OK but I think you visit OK more often and for longer than I can because it's been longer since it happened. You still do go back to Not OK when you see those twins at your kids' school, for example.

    Jenny: Indeed! I erased the paragraph I had on us Not OKers being a feisty bunch who band together readily and fight for our causes righteously!

  4. Great post. I too live in the land of Not OK - but the longer I live here (over 5 years now) the more I think it is actually OK to be here.

  5. I too, live in the land of Not OK. I've lived in this land for so long it seems that some days Not OK is the new OK and that is OK with me.

  6. Hi ~

    I am so in The Land of Not OK, but trying to find my way to The Land of Sort of OK. Each time I try to escape this NOT OK land that damn door slams in my face!! Sometimes it is a quick slam, and sometimes it takes a while, but one thing is for sure...the door always slams.

    It has been just over 2 years for us, and it feels worse now, than it all did up to this point. At first, we were so full of hope, and optimism, and now, we have busted our butts for 2 FULL years with minimal results. We are defeated, deflated, and doing our best to keep moving forward, forward, forward.

    Somehow, someway we are going to have to accept this. That word means so many different things to me...some good...some bad. I just don't know how, and feel so uncomfortable with even writing those words.

    I loved your post, and will definitely be following you. It is not too often I find a blog that hits home, and most importantly, seems very real and honest. I tend to only gravitate towards blogs of people who tell it like it really is, and avoid all the sugar coating crap that just makes THIS worse.

    Thank you!!


    I suppose I am happy there is at least company in The Land of Not OK...

  7. Thank you, Jen (—boy, lots of Jens and Jennys posting today!).

    I totally get what you're saying about acceptance. A lot of people of a spiritual nature have told me to "accept" this so that I can move on. I get it. I know that to do that only benefits me and helps me fulfill my destiny (whatever that is). But at the same time it's hard not to feel like just rolling over and accepting it when life kicks shit on you. At a certain point you want to say: NO! ENOUGH!

    I guess it goes back to the Hamlet quote that started this blog, which has deeper and deeper meaning the longer I walk this path: Is it nobler to suffer (accept) outrageous fortune or to fight (a losing battle) against it?

  8. Thank you for writing about the Land of Not Ok... so many of us are there.
    Many blessings,

  9. GREAT post. I am now a permanent resident along with my son Keegan and my husband Ry. I bet that is you across the street! We have been here for about a year a half and I could not have said it better myself!
    Shared with friends on FB tecause this.is.so.true!

  10. Thanks, Beth. I love it when people share!

    I think you guys live in an elite section of Not OKsville with how much you go through with Keegan. Sorry you have to be here with us, but we're glad to have you as a neighbor!

  11. Anonymous3:24 PM

    Shasta, you've captured the Land of Not Ok in the most eloquent way I've ever seen. It reminds me of a book of Ben's: Because I Love You by Max Lucado. I'd like to change the words people have used when they tell you to "accept" the Land of Not Ok. I think "making peace" with it is better because we can never "accept" or become "comfortable" here. By "making peace" with it we stop tearing ourselves up over living in Not Ok, realize we couldn't have changed how we got here, and save ourselves the ulcers brought on by resenting living here. If we resent living here, we deprive ourselves of the joys that are hidden, waiting to be found in Not Ok. I regret whatever brought each of you to the Land of Not OK, but I'm glad to have such good neighbors as you all.

  12. Anonymous5:11 PM

    Great post. I actually feel better after reading it. i too have a twin with C.P.

  13. Anonymous5:13 PM

    OH, Anoymous is actually the parent of Greta. http://walkingwithgreta.blogspot.com I wasn't sure how to put my name up there, however, anonymous is a great name when I'm in the land of ok, so I use it often.

  14. Shasta, I am linking to this on my blog. As I say in my own post, I had a hard time reading this at first because I couldn't admit to myself that I am not ok with living in The Land of Not OK. But the more I read it the more I realized that this is EXACTLY what my life is like, whether I want to admit it or not. I also realized that I can still be positive and upbeat and it doesn't mean I am in denial - it just means that I am trying to make the most of my visits to the Land of OK. Thanks so much for writing this.

  15. Anonymous2:09 PM

    Maybe I'm just a visitor — I'm not sure — but I am pretty comfortable with the us vs. them feelings (jealousy, isolation, etc.) from staying on this side of the fence.
    Love to the other inhabitants.
    — Jessie

  16. Anonymous2:13 PM

    This is a great post. <3 Not OK is the new normal, and the brief moments of "OMG THIS IS OK!" are so amazing.

  17. Great post! Cary from All About the Small Stuff shared this on Facebook. I guess the only thing I would add is that Not OK can be pretty darn homey after you spend enough time there. In fact, days and days can go by where I don't miss OK at all. I think that comes with time.

    And I guess I want to throw in one other thought based on a comment you left here. You say that it's a pointless battle and in a way you are right, but in a way you are wrong. You won't change cerebral palsy--that's a keeper. What you can do is fight like hell to make sure your kid pursues their potential, to make sure that other people aren't allowed to right them off, and to make sure they have the best possible shot at life. That's not pointless or useless at all.

  18. Love this and living in Not OK also.... But, like Katy said, its homey here and I kinda like it.

  19. Another test message - since the last one did not post. This is a different browser, Shasta. If this works I'll be back later, but using an alternate browser and having to sign in to google everytime makes for fewer comments left by me.

  20. Anonymous8:08 AM

    Amen to that but you know what that key to the gate to land of the okay is finding out why Malachi has Cerebral Palsy - the perpose of CP in his life.

  21. I can't and won't even try to pretend I know what you are going through. I'm sorry.

    I do know though that you have written a very poignant essay. You write beautifully. I feel like even though I don't visit very often, I know this land you speak of.

    Good job and keep your head up.

  22. This is beautifully written---I liked it and I relate to it, too.

    But I disagree about the people who have left the Land of Not OK and moved back to the Land of OK as being liars or naive. I entered Not OK slightly over 2 years ago, spend a year or so really learning my way around my new residence, and then realized that I was slowly gaining dual citizenship. I wouldn't say that I'm "on a vacation" in OK, or "on a vacation" in Not OK, because I spend ever shifting amounts of time in each.

    As time passes, the balance has changed---it used to be only a few hours in OK, or maybe a weekend trip. But not I spend more days in OK than in Not OK, I think. I'm sure that I end up back in Not OK for long stretches, too, but I embrace my dual citizenship and spend a lot of time trying to help others get theirs, too.


    PS--I'm going to share it on my blog's FB page, I think a lot of my readers will be interested!

  23. We live in Not Okay also. I guess my issue is trying to teach my daughter (6 y.o, with SDCP) that she will be OK living in the Land of Not Okay--not necessarily with words, but action, love, and by example. It is a struggle, b/c she doesn't buy it all the time. But I want her to be OK with the way she is, and that can be a hard sell when it just seems so much more difficult from those other OK kids (or her OK sibling). As always, trying to find the balance, right?

  24. Oh my goodness, looks like I got behind in replying to your comments!

    Thank you to everyone for your insights and compliments. It's wonderful to hear from all of you, whether you consider yourself a neighbor, a visitor or a dual citizen. Thank you also to the many people who shared this post. It has now become my top-read post on my blog!

    Dana: In the metaphor of the essay, "moving back" to the Land of OK would mean that you are deeply OK with whatever the original problem was. Except in rare instances (think: enlightenment) I don't think that's possible (providing that the problem is, as I described, "real"). In my reading of bloggers much farther along in the journey than I am, even if the vast majority of the time they are OK, there are still times when they stumble and are sad about what they lost. People who have always been OK (i.e. with normal kids) don't do that. I was trying to make myself and others comfortable with the idea that you are always going to have bad days about it, even if they come 10 years apart.
    I hope that makes sense. I like the metaphor of dual citizenship though.

  25. Anonymous11:51 PM

    Im pretty good with my not ok. it sucks. but its good. and dammit me n the kids r all here and we r alive. its been 2 years for me,my sophie has CP (severe).and rite after the gates closed on us my Loving husband jumped rite back over.it is what it is.(sorry) i love every min of this wonderfull beautiful crazy Semi Ok life. but like i said b4 give "my" shoulder A "pitty" pat.. and see what happens to that hand. bet you pull bck a stump :)

  26. Shasta---Thanks for stopping by Amsterdam International (http://niederfamily.blogspot.com/2010/10/amsterdam-international.html) :) I was going to reply there, but I thought I'd move it here to make sure you saw it, and since it's commentary that's more relevant to your post than mine.

    There are definitely similarities between our two essays. However, I think a large difference between this and your piece is that I'm focusing on the darkness of the airport as primarily a transitional time before getting to the happier life(in Holland). Sure, there will be dark moments in the future, and revisits to the airport, but they become increasingly infrequent. Leaving the airport and enjoying a residency in Holland is, in my opinon, 100% possibly and would be firmly "OK". That's why I strongly disagree with the part of your piece that said that people who claim to have left Not OK are liars or naive . . . I'm not a liar or naive, and I would definitely say that most days (not all, but most) I'm totally OK.

    Having a child with special needs definitely changes one's perspective on the world,it didn't change my emotional stance from OK to Not OK, thankfully. Temporarilty (like, for a year) I was decidedly in Not OK. And now, a year and a half after that, the dual citizenship.

    I guess I feel like many days now I have reached the point of being "deeply OK" with our situation, which would certainly be viewed by most as a "real" problem.

    Thanks for the interesting dicsussion and the Twitter follow, I'm going to follow you too :)

  27. Thanks, Dana!

    I feel like we're saying the same thing but using different terminology/metaphors. I meant that people who say they are 100 percent OK and never have to go back to Not OK are lying or naive. As you mention, you can certainly be totally OK most of the time, but there are still those days. The people who say there are never those days are the ones I find hard to believe.

  28. Anonymous6:23 PM

    Hi there,

    This is perfect.

    I just wanted to say hi and for you to know that my twin girls both have CP, one left hemiplegia and one right hemiplegia. Some days I feel like I am the only one in the world, but today I have realised that I am not. Even though our CP is probably different, it's both our twins. So I am in the land of not okay with you. I live in Melbourne Australia and would love to be in contact with you. Mandy

  29. Hi Mandy, I'm so glad you found this blog. I love finding new MoMs who are dealing with this and you are welcome to contact me through e-mail (there's a link through the envelope button in the top right). Also, have you joined our FOR(m)UM?

  30. Dear Shasta, I have been living in the
    Land of not OK for almost 32 years. We have vacationed in the Land of OK, sometimes for long stretches, days, even weeks, but for the most part, those visits are few and far between. I'm grateful for this because every time I venture out, I once again am reminded that the world is not ready to embrace our children. The light at the end of the tunnel for me is that my daughter, Sarah, aged 31, who was born with Spina Bifida, who has lost her left leg, who has massive non-verbal learning disabilities, has made her life's mission to remove the fence and eliminate the barriers that keep us separated.


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