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Reality versus Positivity

Recently I’ve been getting some emails and responses to the blog that have perturbed me. The basic gist of the feedback – some trying to be helpful, others to be critical – is that by writing this blog I am, in some way, propagating my own demise. That I shouldn’t be giving weight to the fact that I might not be here, but should, in fact, be creating a mantra that leaves no room for any other result but my continued life. It’s the “what the mind dwells upon, the body acts upon” idea.* One person suggested I should write from the perspective of myself at 97. As if I’ve lived a full life and am looking back and reflecting on all the good that happened. Though I think this is an interesting exercise – along the same lines as writing your own obituary in order to reveal what kind of life you’d like to lead or what kind of person you want to be remembered as – it isn’t what I’m doing here. I have not lived a full life. I am not looking back. I am looking forward and can only speak the truth as I know it now, from the perspective of the person I am today. I’m looking to give Lochlan advice on who I want him to be, not muse upon who he has become. Who he’ll be is still a mystery. An exciting mystery and one that I have no interest in speeding along or guessing the outcome of. All I’m hoping is to give him guidance on how to stay grounded, safe and happy on his journey, whether I’m around or not. You don’t have to be sick to worry that you won’t be able to tell or teach your children all you want. I could die tomorrow in a car accident (God forbid) or in 60 years in my bed. It doesn’t change the fact that I want to leave a legacy for my child. Nor do I think it makes me negative.

One woman recently wrote to “reframe my language”. She claimed that people like me get too “attached” to our “labels and stories” and if I wanted to be around for a long time I had to stop using the “sick” and “in case I won’t be here” language. She told me to “live my life from the perspective that things are wonderful, perfect, healthy and happy” and I would be “amazed at what could happen.” Now, after I cried at the criticism – because no matter how positive I feel on most days, I am very sensitive to someone suggesting that I am, in any way, making myself more sick – I got angry. I am a huge believer in the power of positive thinking. I’ve seen The Secret. I’ve done my mantras in the mirror – “I get better and better every day” – and after the mourning period of my diagnosis I brushed myself off and got on with my life. But there’s a big difference between being positive and being in denial. Everything isn’t wonderful and perfect. I’m not perfectly healthy no matter how happy I am, and to suggest that I just have to reframe my thoughts to see the magic happen, is not only naive but slightly insulting.

When Sean and I were first married we got a call about life insurance. Our insurance company suggested that now that we were married we should think seriously about our futures. At the time I couldn’t deal with it. I just got married. I had my whole life ahead of me. Why would I want to sit down and talk about my death.

When Sean turned 30 they called again so he could “lock” in the 20-year-old rate. We just figured it was all about making a buck and frankly, we still weren’t ready to think about it. Hindsight being 20/20, I should have done it before I got married. Now that I have PH I don’t qualify for life insurance. I’m too big a risk. Right after my diagnosis Sean and Loch signed up immediately – the concept of death was now part of our reality, so preparing for it didn’t seem so weird – and I’d advise anyone who asked, to get on it as soon as possible. It’s not depressing to get your affairs in order. It’s responsible. Having life insurance, or a living will, isn’t tempting fate, it’s accepting the inevitable and handling it in a mature way.

What I should have done with my life insurance I’m doing with these letters. The reality of my situation might have prompted the initial step, but at this point it’s less about writing the letters in case I’m gone, and more about writing the letters themselves. They make me happy. They make me feel productive. In doing something proactive for my child, I feel more alive and connected to the world as a whole. To the people who think I make myself weaker – accepting and referring to my reality – I humbly disagree. If anything I’m stronger because I’m less afraid.

I believe in the power of the human mind. In the strength of a positive outlook. In making your own destiny by framing your own reality. But I also believe in Reality. In Truth. In Fact.

The fact is, I’m sick.

The reality is, we don’t know how long I’ve got.

The truth is, no one does.

I’m doing the best with what I’ve been given. As I say in the intro to my blog: I’m just playing the cards I’ve been dealt and still trying to win. Pretending reality is different doesn’t make it so, but having faith and taking steps to ensure the best possible outcome certainly helps.

Expect the best, plan for the worst, and prepare to be surprised.**

It doesn’t hurt to plan ahead. It wasn’t raining when Noah built the arc.***

Thanks for reading.

xo leigh

*Denis Waitley  – motivational speaker

** Denis Waitley  – motivational speaker

*** Anonymous

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71 Comments Post a comment
  1. Amy #

    Hi Leigh,

    Go with your gut. It is telling you the truth. I find your letters and posts inspiring for all humans. We should all take the time to write to our loved ones. So much does not get said during the bustle of our days. You are making the time to be intentional. You are offering the essence of who you are. This vulnerability is courageous and derserves the utmost respect.
    Sending you a big hug.

    Amy

    February 6, 2012
  2. You are correct none of us know how long he or she has on this earth, leaving a written “journal” for just in case, is perfect, I did it, I had letters for both my sons for just in case something were to happen to me before they were 18 and supposed “men” I burned those letters a few weeks back, and with Arin turning 18 on tuesday I will again write letters to him and his older brother, not that I wont be here for them in later years, BUT if something were to happen I want them to know how I feel now, and what I hope and wish for them in their journeys ahead.

    unlike you my Dad died when I was 13, I know not a crucial age to most, but for me I have thought about death probably more than the average person, why? because I could have left my sons like my Dad left me, so I prepared, I dont want them to have questions like I had for my dad.

    You are doing what is right for you and your family, I say prayers everynight, and as much as I am unable to pray for every individual, I do ask for God and his angels to help my blogging friends with whatever may be in their lives currently. I hope and pray the same for you and your family.

    February 6, 2012
    • Thank you Deborah. I throughly appreciate both your feedback and your prayers. I sincerely hope that I’m around and kicking in my 90’s, but I feel less nervous knowing that at least I’m doing something for my son just in case I’m not. I’m sorry about your dad. I think losing your parent at any age is crucial. God bless you and your family. xo leigh

      February 6, 2012
  3. Valerie #

    Everytime I am in Leigh’s presence I am not in the presence of a “sick” person. Far from it. I am relieved that her illness is not the ignored white elephant in the room nor is it an all cosuming shadow. Sean, Leigh, and Loch live as they would without the sickness only they are more informed. They seem to have more fun, feel more, care more – as we should everyday be grateful for life – they are. It is actually a reminder to seek the sunshine, to not sweat the little stuff, to be thankful for living.
    Leigh – you are an amazing, thoughtful, talented, fun, intelligent, loving human being. You remind me that life is for living everyday. I only hope I can live my life with the grace and elegance that you do. Thank you! Valerie

    February 6, 2012
    • Oh Val. You made me weepy. Thank you. Hearing that from someone who knows our family and can see us from the outside is really a special testimony. We’re trying to hold it all together but it’s hard for us to see how we’re doing from the inside. Thank you for your candor and your love. xo me

      February 6, 2012
  4. Leigh,
    I’ve only begun reading your blog recently, but honestly I’m stunned by the emails and reactions you received. It’s one thing to try and have a positive outlook, and another to go about blindly ignoring the realities of life, or to imply that somehow “if you just think happy thoughts, the negative will wash away.” That line of thinking, to me, trivializes your situation – which I consider far from trivial.
    First off, I want to say this – I don’t understand why in some circles it is some how less socially acceptable to express negativity. The cons of life are real and impactful, just like the pros. It would make much more sense for all of us humans to try and support each other as one force, one species, then to encourage those going through very challenging issues to pipe down or to somehow put a positive spin on things. How are we all going to talk about the mess/muck of living if we’re only allowed to talk in platitudes and positive sentiment?
    Secondly, as someone who has a chronic condition by way of a major injury (certainly not the same as your situation, but related in that it’s a medical malady that I deal with regularly that came about without my doing and regularly impacts my day to day), I just wanted to share that I’ve also encountered difficulty in finding a sense of understanding from others. More than once I’ve been told to “just get over” what happened and move on and “be thankful” for what I have. I’m actually quite thankful for what I have, but that doesn’t mean I can’t express anger/resentment/frustration/pain over what I’ve lost (or will never have), either.
    As Amy said above, please continue on your course, following your heart. You have at least one reader, who appreciates your journey and reflections along the way.
    Always,
    Sarah

    February 6, 2012
    • Thank you Sarah. Truly. I do think it’s funny that we, as a society, put so much emphasis on everything being “good”. I remember when I first had Loch and it was so hard. I was so miserable and tired and burnt and yet people only wanted to talk about how wonderful it was, and wasn’t I overcome with joy all the time. It was such a relief to meet a guy in a store one day who looked at me and said, “It’s pretty gnarly right? It get’s better.” I almost burst into tears. I was so grateful for someone opening the conversation to the negative aspects of what I was dealing with. It made me feel so much less alone. I am so sorry you are dealing with a chronic condition yourself. Any sort of malady that disrupts your day to day existence is a burden and one that takes real effort to overcome and live with minimal complaints. I applaud your struggle and wish you the very best at not popping off at people who tell you to “get over it”. Jeesh. I mean, really? All the very best, xo leigh

      February 6, 2012
    • Q. Annie #

      You have a point Sarah. When I was in my teen years I resented a few people who told me to “just get over it” when I had emotional problems. As a teen, you’re just going into the world with no hands, so you’re going to run into things you can’t see a solution to. But that does not mean you shouldn’t listen to a teen because they might be trying to get help.

      anyway, I went through my teens into adulthood and now at 27, I feel as though sometimes I’m just like those people who said “just get over it”. Why? because we do run into people who COMPLAIN all the time or Boo Hoo all the time over things THEY CAN EASILY CHANGE. But for people like Leigh and others with issues they CAN’T change by themselves, they shouldn’t be told to “make like happy and move on”.

      ~Quaisha

      February 6, 2012
  5. I just wanted to stop by and tell you that I really enjoy your blog. I think we have taken the concept of positive thinking too far. It makes us feel in control, that if we think it, it will happen…just an indication of our self-centered, ego-centered, narcissistic society. And The Secret is a bunch of BS if you ask me 🙂 This is your way of processing your reality and feeling that you can affect it somehow through leaving a legacy for your son and connecting with others. But you are doing it while accepting your reality for what it is. All we have is today, this moment, death will come for all of us, sickness will too. What matters is what we do with this moment.
    Happy writing!

    February 6, 2012
  6. Lex #

    Very well put. I love your blog and get so much out of it–especially little reminders to loosen up–stop to smell the roses (or how my 3 year old’s hair smells–which is lovely by the way) Thank you for writing it because I am a Type-A, worry-wart and tend to be negative about things and get wrapped up in whether the house is clean enough, my children are smart enough, where they will go to college, will they ever stop whining, why can’t I lose that last 5 lbs. Your blog is to the contrary–very positive, funny, real and inspiring. I am reminded that no one gives a sh*t if my house is clean enough–go play with your kids because ALL of our lives are WAY TOO SHORT. Thank you for doing this!

    February 6, 2012
    • You rock Alexis. For the record, for all my effort in really appreciating the moments, I too freak out about my house, my child’s whining, my weight, our finances, my skin. It’s great to remind yourself to not sweat the small stuff and it’s another thing not to freak out when some yutz scoops your parking space. Let yourself off the hook for not letting yourself off the hook. How’s that for advice!? xo leigh

      February 6, 2012
  7. Good on you for clearing that up McG! Love you bigtime-o. xoxo k-town

    February 6, 2012
  8. Leigh, you have a courageous and brilliant spirit. I admire you for letting all of us in on your life, your heart, your feelings, . . . and I’ve already learned from you. Do what feels good to you now. When we do that, it raises our vibration which creates a win-win. Thanks for being who you are and sharing what you share with all of us, your faithful readers. Namaste.

    February 6, 2012
  9. i think without a doubt you need to do what works for you. i remember reading your ABOUT section and clearly recalled your last sentence –“Again, I would like to reiterate, I have no plans to go anywhere anytime soon. Period.” which was a pretty good affirmation that you were in this life for the long haul. positivity and reality don’t need to be exclusive 😉 you just keep on doing what is right for you. your words are wonderful and your son is so very lucky to have a mom who is dedicated to shaping his immediate life and his future life. keep being present and keep being strong. ♥

    February 6, 2012
  10. I think it is a great blog. My family lost our mother suddenly during childhood and it would have been great if she had left a blog full of advice and stories about her life. Other than my mother you have time to do these things rather than passing away all of the sudden without warning and I think you’re using your time wisely with this blog. Keep it up, great job 🙂

    February 6, 2012
  11. I hate it when people suggest that a sick person is making themselves sicker. It’s so irritating. You are NOT making yourself sicker, but probably making yourself better by creating. I liken people who think a person can “will” themselves into cancer or any other disease to conspiracy theorists who think the entire world is decided upon by a committee of 15 people who meet in an undisclosed location! It’s RIDICULOUS and silly. It bothers me so much, I may have to write about it…

    February 6, 2012
  12. Leigh:

    Kudos to you for addressing that in a kind and compassionate, but still confident manner. I receive a fair amount of “you should” emails in response to The Gratitude Campaign, as well. I’ve come to realize that those are really about them, not me. And I’ve pretty much come to the position that, if you’re so sure of what I “should” or “shouldn’t” be doing, perhaps you should start your own blog…

    Truth is, if you weren’t already doing what you “should” be doing, they probably wouldn’t be reading your blog in the first place.

    All the best,

    Scott

    February 6, 2012
  13. I really enjoy your blog! You can definitely be both postive and realistic. Like most parents, we hope and pray that what we’ve taught our children will carry on through life even when we are not there.

    February 6, 2012
  14. Courage comes in many forms…Keep writing and keep sending out your beautiful message!

    February 6, 2012
  15. I totally agree with you, L. None of us knows how long we’ll be here. You’ve been diagnosed with something that makes you think about it every day, and I’m so sorry for that. I think everyone who becomes a parent suddenly feels that mortality, sick or not. That anything can happen to us at any time, and we have to be prepared for it. Your blog has made me think about starting something similar for Kaisa. I, too, want to be in her life until my old, old age, but I also want to know that she can have a part of me, should anything ever happen to me prematurely. And I want her to be taken care of. So, continue writing, sister. It makes you happy, and it makes me happy reading your blogs. You’ll be around for a long time and you’ll have a lot of fun reading these with Loch one day when he’s older. Much love xoxo

    February 6, 2012
  16. People try to help, misguided it may be…but if people are showing compassion and trying to help surely that is a good thing…though reading some of the comments people have made to you shows they need to sharpen up their sensitivity if they really want to help… more power to your elbow as they say here in the Uk ( not sure why 😉 )
    I think your words help us all think sick or not…Go Leigh !!!!!!!! Go Leigh !!!….

    February 6, 2012
    • I know that people are, for the most part, just trying to help and for that I am grateful. But, as you said, perhaps the sharpening of sensitivity isn’t a bad idea. Thank you for the props Hellen. And may I just say that “more power to your elbow” is brilliant. I’m totally adopting it.
      xo leigh

      February 6, 2012
  17. blumi #

    Hi Leigh, thank you for addressing this issue in eloquence, it’s something that is also very close to my heart! All the best.

    February 6, 2012
  18. The nerve of people to tell you what they feel you should write on your blog. And usually the ones sitting back giving critiques are ones who don’t have blogs themselves.

    February 6, 2012
    • WordPress is acting wonky…it wouldn’t let me finish my comment. I wanted to also say that I am a fan of your blog and your words are moving. You should write about what YOU want to write about and don’t let those armchair critics get to you. And I agree—while it’s a good idea to think positive, it’s repressive to not have negative thoughts once in a while.

      February 6, 2012
  19. Hi Leigh:

    I just wanted to say keep on doing what you’re doing. You know what’s right. Amy said it well above. I enjoy reading your blog and am thankful for the inspiration and lessons that you provide not only for your son, but for your worldwide family.

    Just be you and the world will be a better place for it.

    Blessings from T.O.!

    February 6, 2012
    • My worldwide family! How lovely. Thank you Valerie. xo

      February 6, 2012
  20. I think it’s wonderful, what you are doing for your son and yourself. Your writing is inspirational and lovely…and I am so grateful to have found your blog.

    February 6, 2012
    • I’m so grateful people are finding it. Thank you.

      February 6, 2012
  21. Leigh – I love your blog. I love your honesty. I love your perspective. While I know that the intent of your blog is to share your stories and thoughts with Loch it has become so much more. It has made me stop and think about what I want to tell my kids. What do I really want them to know about me and how am I currently sharing it with them? It’s made me stop and appreciate my marriage more. And, it’s reconnected me with an old friend – you.

    I’m all for positive thought – it’s not beyond me to litter our bathroom mirror with sticky notes that remind me of what I want to think and how I want to act – but not at the expense of an injection of reality. I think you’ve struck a fantastic balance of living life for what it is today, ensuring you’ve left a lasting legacy for Loch and looking forward to see what tomorrow will bring.

    Keep writing. And, don’t change a thing. Even if your words are intended for tomorrow they are making a big difference in people’s lives today.

    February 6, 2012
    • God Sarah, what a lovely note. Thank you for your kind words. I’m especially fond of “Even if your words are intended for tomorrow, they are making a big difference in people’s lives today.” Honestly, I’m totally touched. Thank you.
      xo leigh

      February 6, 2012
  22. I think you’re a brave. And if you’re writing stirs the pot, you’re clearly doing it well. I’m glad you’re blogging, and I’m grateful to be reading it.

    February 6, 2012
  23. You go girl:) Continue to stay true to your quest. – it’s a righteous one. And your little man is blesses because it.

    February 6, 2012
  24. I’m deeply inspired when you mention about, “It doesn’t hurt to plan ahead. It wasn’t raining when Noah built the arc”.

    February 6, 2012
  25. Kitty Hun #

    Thank you for this. I love people who will fearlessly speak the TRUTH. I began to follow your blog BECAUSE it didn’t follow those macaroni-and-cheese guidelines that EVERYONE sees through. “In Case I’m Gone.” The title itself is bold. It’s beautiful. It’s you. As a creative writer, I have oft found that in workshops, sometimes stories will be criticized not for their word choice or stylistic devices or cliches or plot holes or character depth–but because the story itself is just not how they would have written it. Or how they wanted the character to end up. People are controlling. They’re also very “smart.” Be strong in your content. Your words are beautiful. And they are for more than just this online audience.

    February 6, 2012
    • Ah Katie, you’ve read my mind. I feel you on the macaroni-and-cheese guidelines. I love the expression too. Thank you for your compliments and for seeing a future for my writing beyond the blog. It truly means a lot to me. All the very best, xo leigh

      February 6, 2012
  26. Sabra #

    May I make a suggestion: Live your life in such a manner that makes you happy, gives you a feeling of accomplishment and gives you the satisfaction that you have said many of the things that you wanted to say to your son while you still remember them. Because, be your death in your bed 60 years from now or in a car tomorrow – between now and then we forget all of the things that we wanted or needed to say to our loved ones. Dismiss those around you that condemn (or attempt to do so) you for doing the things that work for you & surround yourself with those that challenge you to go beyond the limits that you have set on yourself. I love your writing – we are about the same age and you have reminded me of so many things from my youth (specifically thinking of Death of Aniticipation). I also have children and though I am not sick, I fear the unknown and not having had the time to pass to them all of the wisdom… and mistakes… that I have built in my lifetime. Please, keep writing – just as you do – and sharing your precious memories, stories, and lessons. You make me remember to cherish everyday and work harder to share time and lessons with my children. Thank you for taking your time to share with all of us.

    February 6, 2012
  27. Ley #

    What you are doing with this blog is brave and genius. You will never make everyone happy, but you know better than anyone what’s best for you. Yes, positive thinking helps, but reality is just that-real.
    You are brilliant, brave, and thoughtful. Enjoy everyday. Every moment and keep writing! Just as you have people who disagree with what you do, you have an overwhelming amount of people who love this blog:)
    Be well!

    February 6, 2012
    • Thank you Ley. I know that not everyone will like what I do. I’ve learned that in spades in my real life. I just wanted to take the time to address that which has been irking me. I’m glad that the majority stands with you and the embracing of both hope and truth. All the best, xo leigh

      February 6, 2012
  28. I find your blog really inspiring and interesting. I have to say, how is it that people can worry you aren’t approaching your life with enough positive thinking…and then be overly critical towards you about it? How is reaction to such criticism supposed to get you thinking positively?

    February 6, 2012
  29. Leigh,

    I am really touched….Will pray that you keep writing for us for next 20 yrs… God bless and take care of yourself.

    Regards
    Sundari

    February 6, 2012
  30. I love this blog. I love what you have to say. Don’t listen to silly people. No one but you knows what you’re going through, and no one but you can tell your story. Thank you.

    February 6, 2012
  31. It’s a wonderful blog. Loved your point about positivity being different from denial. Very true indeed!

    Your courage and honesty is what makes this blog appealing. So at least I don’t think a different tone is necessary. Anyway the fact you are getting so many mails(no matter what they say) means, you have so many people thinking about you, wishing and praying for the best 🙂

    Keep going!

    February 6, 2012
  32. Go for it, Leigh!
    Don’t take the slightest bit of notice of any comments or emails you get that are negative, or critical or giving advice. You are doing the absolute right thing and your posts are fantastic! Your son and husband are very lucky to have you and I think the idea of writing letters to your beautiful little son is a fantastic one – wish I’d done that. Re your disease, I am crossing my fingers, praying, sending white light or whatever you want to call it.
    Julie

    February 6, 2012
  33. Just like being an actor, being a blogger really asks for it. I don’t know what it is about the internet that makes people such experts on everything, and so qualified to tell other people how they should be living their lives. I’ve come to see commenting as a sort of performance art – especially on some of the more academic sites like the Atlantic.

    I love the thoughtful tone of your blog – it takes a lot of courage to share such original and personal thoughts with people who don’t know you. Most people won’t even take time to think about the nuances of what you actually said before they are busy firing off their comment – keep speaking to the ones who do. They’re probably the ones you will never know are there….

    February 7, 2012
  34. “I’m not perfectly healthy no matter how happy I am, and to suggest that I just have to reframe my thoughts to see the magic happen, is not only naive but slightly insulting.”

    I could not agree with you more on this point. Taking it one step further, I’ll bet most people — if they were honest — could also say, “I’m not perfectly happy no matter how happy I am…” Really, you could insert just about any feeling into that blank and it would be no less true. Admitting that life can be unfair and imperfect doesn’t make you a pessimist!

    I think what you’re doing is positive and reality-based. I’ve never seen the value in denying reality. Hoping and believing in a brighter future ahead never hurt anyone, but closing your eyes to what’s directly in front of you, walking blindly forwrd, and pretending that you are standing in that brighter future only leaves you vulnerable… to running nose first into a wall.

    February 7, 2012
  35. Jeff Walker #

    Keep doing what you’re doing. And not for any of us out here who enjoy reading you. Keep doing it for your son, your husband and for yourself. I’ve been writing in a similar vein for about a year now. Not because of an illness, but because there are no guarantees in this life. I thought it would be selfish of me to keep any of the wisdom (or folly) that I’ve gathered in living 44 hard years to myself instead of sharing it with my young children. I wanted to leave them something “in case I’m gone”. Yesterday I picked up a book I found written by Peter Kreeft, one of my favorite authors, titled “Before I Go: Letters to Our Children about What Really Matters.”

    What you’re creating is a legacy of sorts. And that’s a beautiful thing.

    February 7, 2012
  36. I love your blog and think it seems to be therapeutic. Writing your feelings only helps you grow and I hope you never change 🙂 Keep doing what you think is right and live your life to the fullest. Like you said, no one has anytime how much time they have left so you just have to keep swimming.

    February 7, 2012
  37. Laurie Wallace #

    My Darling Leigh: I told your Mum that I couldn’t subscribe to your blog because the title upset me, but she assured me that it was not morbid in any way and that I should read it. So I did, and it’s precisely that fact that you face a none-too-thrilling reality with an unfailing positivity that gives everything you write such grace.

    How about a book? Is this remotely possible? I could give it to my grandchildren some day.

    Your loving cousin Laurie

    February 7, 2012
    • The book is forthcoming! And I’d very much like to sign said book for your darling grandchildren. xo leigh

      February 7, 2012
  38. Do you ever “lucid dream”? I’ve read a few of your posts and you seem like a good person. You are, without doubt, a wonderful writer. You strike me as an open mind…

    February 7, 2012
    • Now, I had to look up what “lucid dreaming” was, but yes, I definitely lucid dream. I always have. I’m very conscious of my dreaming and my dreams have always been incredibly vivid and detailed. I actually write as much down as possible, and have written a number of stories and story ideas because of them. I’m often quite tired in the morning because I feel like I’ve been busy all night. As Loch gets older I am realizing that he is like me in this way. He can already tell me vivid details from his dreams and does, from time to time, have upsetting nightmares. I think, for the most part, it’s a gift. Sometimes I’d like to sleep soundly without the interruption or drama, but I’d miss the adventures too much to give them up.
      Wow. That’s a long winded answer. Apparently your question struck a cord.
      xo leigh

      February 7, 2012
  39. Hi Leigh, been following for some time, first comment. New to blogs and bloggingforensic clinical and forensic psychologist and have seen lets say the darker sides of life and loss and trauma, and perhaps most tragically so very many people who “die” while their body is still well alive. I find in your writing, the way you write and the way you infuse your whole heart into it, that you’re more alive and life promoting than most people I’ve encountered. Keep living and writing the way you do, until you won’t and can’t, and I for one believe the legacy left to your son will be a clear message to embrace life to its fullest with all it’s complexities, joys and pains. PS- I considered blogging for two years, until I came across your blog, and it moved me to action. Thank you for that.

    February 9, 2012
    • Meant to type ” I am a clinical and forensic. . . “. Darn autocorrect on the iPad. 😉

      February 9, 2012
  40. As with everything in life, it’s a case of striking the right balance. Being totally positive all the time would be like sticking one’s head in the sand and ignoring reality. On the other hand, dwelling on the worst-case scenario every day would make for a very depressing life and might even set up a self-fulfilling prophecy.
    Part of the reason why I blog is because I’m not getting any younger ( 62 and counting) and I want to marshall my thoughts about life to serve as a sort of legacy when I’m gone. I am trying to tease out the essence of myself so that in the future, I won’t be just a name and a few dates on some descendent’s family tree. I am always pleased when my children read my posts. My posts make a positive contribution to my life by helping me to make sense of it, but I’m realistic enough to ackowledge that one day, their main function will be to act as a link to subsequent generations when I’m no longer here.
    So, in writing your blog and the letters to your son, I think you’re being both positive and realistic. It’s a very balanced approach to your situation. I enjoy your writing very much. Thanks a lot.
    Stuart Bates — United Kingdom.

    February 10, 2012
  41. Hi Leigh, been following for some time, first comment. New to blogs and blogging. I’m a clinical and forensic psychologist and have seen lets say the darker sides of life and loss and trauma, and perhaps most tragically so very many people who “die” inside while their body is still well alive. I find in your writing, the way you write and the way you infuse your whole heart into it, that you’re more alive and life promoting than most people I’ve encountered. Keep living and writing the way you do, until you won’t and can’t, and I for one believe the legacy left to your son will be a clear message to embrace life to its fullest with all it’s complexities, joys and pains. PS- I considered blogging for two years, until I came across your blog, and it moved me to action. You’ve been a true inspiration. Thank you for that.

    February 10, 2012
    • Needed to add Leigh that I think you find the right balance, as many have said already. Be well.

      February 10, 2012
    • Thank you for that George. Both the positive feedback on my blog in general, but also for letting me know that you’ve started blogging yourself. I can’t tell you how happy it makes me to know that my words aren’t just for my future son, but also have the ability to connect and effect a present group of people. Thank you for that.
      Adorable profile pic by the way.
      xo leigh

      February 13, 2012
  42. Beautifully said. When I got pregnant, my mom urged me to get life insurance right away. I worried about the extra monthly expense…until after my son was born. Once I realized the weight of what had happened- that I was now fully responsible for the well-being of another human, and one that I loved at that- having life insurance was no longer a burden. It was a responsibility. A responsibility to my son. I see these letters that you write to your son in the same way…one of your responsibilities to your son. Having life insurance is a way of financially parenting even after you’re not around. Sharing your wisdom, thoughts, and love through letters lets your parenting go on no matter what may happen to you. I’d say your blog, and the whole idea around it, is one of the most responsible (not to mention loving) things you can do.

    February 10, 2012
  43. Jonalee #

    I am so sorry that you have had to deal with the unlovely. People can be cruel with out any intention to be. Their hearts are in the right place, but horribly misguided. (I say this because I was just there last week myself… Told that it was my lack of faith that I was not cured) We live each day. Celebrate every day we wake up. Every day we can do things on our own without help. On those hard days, we love the men that help us and support and love us unconditionally. If people can’t see the love you have, and that you write because you love life and love Loch and your hubby… I am sad for them. Blessings dear Leigh. Keep blogging and writing. You are great at it.

    February 13, 2012
  44. I’ve been following your blog for a little while now and I have so much respect for you and love your writing. Two years ago I went to the hospital for what I thought was an asthma attack. My throat was tight and I couldn’t get a full breath. It didn’t feel like my normal asthma attacks, but I didn’t even consider it could be anything else. I only knew my meds weren’t working and I needed help.

    After several hours in the ER, the doc came in and I expected him to tell me to get out of there and go home. Instead he told me he was admitting me to the heart floor. I’d never had a heart problem and heart anything in my life. I thought I’d heard him wrong. But I spent eight days on the heart floor, not allowed to see my two boys, not knowing what was wrong with me or if I was ever going to see my boys again. My blood pressure was dropping to 70/40 and my heart rate was soaring in the 200s for no reason at all. They ran every test you could think of, and talked about surgery. For eight days I thought about what would happen to my children if I just up and disappeared like that. My oldest was in kindergarten and my youngest was three at the time.

    I can tell you for sure I thought about starting to write letters or get a video camera, but I just couldn’t bring myself to do it. Luckily everything turned out fine. I was finally diagnosed with hypoglycemia that was causing heart symptoms, and the barrage of heart meds the doc put me on only made the symptoms much, much worse.

    I can definitely understand where you are coming from and I hope you have many, many years ahead of you. And if you do, these words are STILL going to mean so much to Loch one day.

    February 13, 2012
  45. Hi Leigh.

    It’s me.

    I’m writing this in your comment box because it pertains to this post…but I think it’s going to be very personal so you can decide if you want to publish the comment or not.

    First of all, you are a beautiful, sensitive creature…an artist. You put it ALL on the line which also makes you brave. When you put it all on the line you are opening yourself up to be vulnerable to other people’s judgement.

    To spare yourself the tears when someone criticizes you, try to remember that the criticism is what you want (good luck with that—I have yet to master this). Everyone telling you how great you are all day (which of course you want to some degree) gives you an altered state of reality. It’s the criticism that either helps you see more clearly to alter your path…or to ponder your path more intensely to find you do, in fact, disagree with your critics and therefore solidify your original stance.

    What I love about you is that even though there were tears, you chose not to disregard this critic, but to listen carefully to what she said, really think about it and then craft a response.

    I love the whole idea of positive thinking and vision boards etc. I love what an optimist Michael is (I, am not—it holds me back often, but being too optimistic can hold you back as well), but there are undeniable truths in the world.

    2 things, then I’ll go…promise!

    1. There was a great study done somewhere (Harvard, Yale?) that proved people who write down their goals tend to accomplish them much more often than people who do not. Vision boards do something similar just by keeping the mind focused. But they will not cure pancreatic cancer.

    2. I’ll never forget the SNL skit about Oprah and ‘The Secret’. In the skit, she sends crates of the book to Darfur so people can visualize better lives for themselves. The fake Oprah (Maya Rudolph) asked a recipient via satellite in Darfur if he read the book she sent. He replied, ‘I ate it.’

    Of course it is unhealthy to get bogged down with what you can’t do anything about, ie. spiraling out of control about what could be, should’ve been, shouldn’t be. Negativity of that sort is harmful (it releases a lot of stress hormones and makes one pretty annoying to be around). But reading a book about ‘visualizing a new bike’ when you don’t have any food is just as unhealthy.
    Spending all of your time in a reality that doesn’t exist doesn’t make the reality that does exist any better.

    That being said, I admire your critics for challenging you and further more I admire you for sticking to what makes sense to you. What you are doing is a labor of love for Loch, it gives you a constructive way to deal with being sick. And most importantly, I think it touches a nerve in people that you mentioned before—none of us know how long we’ll be here.

    That freaks people out, yo!!

    xb

    February 15, 2012
    • Thanks Bets. I really appreciate that. And you’re right. Not everyone is going to be positive. Critics definitely have their place and can encourage us to look at ourselves and our work with an objective eye. I don’t cry at criticism so much (well maybe I do a bit) as I do at the idea that I could in some way be doing more to make myself better. I did, as you pointed out, take that criticism and respond to it both to address the comments head on but also to figure out how I really felt about them. But that SNL skit is brilliant. Brilliant.
      I love you. Thank you for your support.
      xo leigh

      February 15, 2012
  46. Olivia Sedustine #

    Hey, Leigh.

    So I’m reading this book that you actually passed on to Tyler and I when Elijah was born – “And Baby Makes Three.” I just started it and it’s already helping us do better in our marriage post baby, so thanks! Funny story about how I started reading it just now 1.5 years after Elijah was born – will have to tell you some time, but…
    What I wanted to tell you was about this quote from the book – “With our baby’s arrival, we face a profound decision: From the cultures we’ve inherited and the new one we’ve created, what should we keep and transmit to our offspring, and what should we leave behind? We can think about this decision and control what our babies absorb. Or we can ‘vote with our feet’; in other words, we let our babies learn by what we do, regardless of whether we’ve thought about the consequences of our actions on our babies. Either way, by the daily choices we make we create a legacy for our children.” – John M. Gottman, PH. D.
    The idea of creating a legacy for Elijah moved me really deeply! And when I saw this response you posted based on some feedback you’ve gotten, the first thing I thought was – wow, Leigh is being so intentional about creating a legacy for Loch! It’s awesome parenting to the max, in my opinion.
    I’ve also been studying the grieving process over the past few weeks for a project I’m working on, and I don’t think people always realize that a person who develops a serious illness is experiencing a major loss that brings with it an entire grieving process…seems to me like these letters/ this blog is such an important milestone in that process. And they’re an inspiration to many people for so many different reasons. I feel honored to get to read them.

    February 16, 2012
    • Thank you Olivia. I really appreciate the support. Intentionally creating a legacy…yes, that sounds about right, and serious illnesses bringing with them a type of loss that requires grieving…also sounds very familiar. Thank you for taking the time to try and understand. It truly means a lot. xo leigh

      February 18, 2012
  47. Sue Bates #

    I want to start by saying that I don’t know of anyone who has demonstrated more courage and determination to live fully than you, Leigh. Life is in session for all of us. We choose how we respond, and hiding from our life truths doesn’t benefit any of us. When I read your words, I feel like I’m reading a love letter to your son, your husband, your family and friends. Thank you for sharing in such a beautiful way the thoughts in your heart. With love and respect, Sue

    February 17, 2012
    • Sue, You are reading my love letters. Thank you for seeing that. xo leigh

      February 18, 2012
  48. Leigh,

    Great post. Love the pic at the end. You write your truth and nothing, no one, else has a right to edit it. I recently wrote about people failing to be prepared to die. Death is nothing to fear and it sounds very much like you’re doing what one should be doing before it happens: living.
    I remember the woman who made video tapes for her daughter about all manner of things (including interacting with the opposite sex like you next post) and as a legacy of remembrance for the child. The girl, now a young woman, and her father both indicated what a treasure these tapes became and still were.
    Keep being positive, not only because miracles happen, but because it infuses your soul with a wonderful light you shine out onto the world. And keep preparing because, no matter what happens, everyone will be glad that you did.
    Wishing you the most phenomenal journey.
    Deb

    February 18, 2012
    • Miracles do happen. I truly believe that. I’ll have to go and read your post on preparing to die. Not because I want to be prepared so much, but because I’m not. I still actively fear it.
      Thank you for your well wishes and support. It truly means the world to me.
      xo leigh

      February 18, 2012
  49. narrativedesign #

    Hey, Leigh –

    I’ve followed your blog because I was diagnosed with IPAH a year after the birth my first child – also a boy – in 2009. I did get life insurance during my pregnancy, but I haven’t yet found a way to start preparing a future for my little man I’m not a part of … so that puts you streets ahead of me. I’ve responded really well to treatment so far and no one meeting me for the first time would ever guess that I’m sick. Or how terrified I am, all the damn time, of this disease that no one has ever heard of and no one seems to understand.

    So when someone tells me I’m a miracle, or that I have to look at the bright side? On my bad days that feels like minimizing how hard it is to live my everday life and appreciate everyday joys knowing just how fragile the whole thing is. How fragile we all are, really. And besides, if my life is going to be shorter than I’d hoped or expected? I don’t want to close my eyes to any of it. There’s no part of being here I want to waste.

    So I understand why your approach to this blog is helping you. And you should know that it is also helping others who have a lot in common with you. And that it is helping others who have no idea what you’re going through. And that there will be a point in Loch’s life (and may it be when he is well grown into the man you’re helping him be) that it will mean the world to him, too.

    February 19, 2012
    • Wow. Talk about parallel lives. I’m really sorry you’re dealing with the same thing. It’s…well, it’s not good is it? I’m thrilled though that you are responding so well to treatment and that most times people wouldn’t even know you’re sick. That’s how I feel and I see it as a major blessing. Perhaps we’re the new PH. The future of the disease. The ones that will see a cure, or at least a way to live long and fruitful lives despite our diagnosis. I don’t plan to go anywhere soon but, like you, I’m sure as hell not going to waste the time I’ve got. Let’s just hope, for both our sakes, that it’s a heck of a long time. Love and best wishes to you and your family. Please, keep in touch. xo leigh

      February 19, 2012

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