Wednesday, July 25, 2012

Okay

The day he died, I wrote that I was not ok. That was true then.  I looked at the post again today.  I said that I didn’t even know what ok looked like anymore. And I think that’s exactly it.  In this brave new world of dead children and broken lives, I do not know what it means to be ok in the same way.  I’m still not quite sure what a new, post-James emotional neutral looks like.  There was a time when I could wake up with some regularity and predict the contents of the day.  James’ death removed the axis point around which that settled world revolved.  The re-shuffling of the moving parts without their center of gravity has proved a sloppy affair, beset by a tendency to take two steps forward and three back, compounded by the fact that I’m not always even sure which direction is forward and which is back. 
Perhaps that’s why I hate when people ask me that question.  Usually I brush it off; it’s a rote question, the kind that you ask with no real expectation of meaningful dialogue in return.  I should know, I’ve been guilty of doing the exact same thing.  In fact, that’s probably why it bothers me more than “How are you doing” or something similar.  “Are you ok” is my own preferred platitude turned back on me.  The trouble is when people ask me it irks me- I want to ask them how they’re defining ok.  Does ok mean that I woke up, showered, and was productive today?  Because if so, yes, I’m ok.  Provided you refrain from putting up pictures of him and talking about how he got sick and died, I am unlikely to burst into tears during the middle of our conversation.  Does it mean that I am capable of laughing, making jokes, and even having fun?  Then yes, I’m ok.  That does happen, and I’m glad for it.  Does ok mean that I am now untroubled by the fact that my infant son died of brain cancer? Because I am definitely not ok about that.  I am whatever you would describe as the opposite of ok about that.  I do not expect to become “ok” about that. 
A few months after he died, a friend I hadn’t seen in a while asked me that question.  For whatever reason (probably because I knew I could) I went off on him.  I broke out the usual sarcastic barbs.  “No, I’m definitely not ok. Remember how my son died? That was pretty not ok. But if you look past that? Yeah, I’m doing pretty awesome.”  His attempts to apologize just encouraged me.  “You know what? Don’t be sorry. I’m so glad you asked. I was really looking forward to an opportunity to talk about the defining tragedy of my life with you in advance of tonight’s showing of Moneyball. Can we get some drinks first though? I don’t want to miss the previews.”  In reality of course, he was just trying, and happened to catch me at a bad time when I’d heard the question many more times—and much less sincerely—than I needed to.  I apologized later.  Far more troubling was that I didn’t actually know the answer to his question, or any time someone asked.
And that’s the strange thing.  Because I still don’t know what “Ok” looks like anymore.  I know what it used to look like, the sort of bland neutral that it represented nothing in particular, but I do not know what that means for me now.  I am not the person I was before James died.  I’m working out what ok means, because any definition must include what happened.  It’s impossible to bury it in some kind of neutral way.  In some ways, that has been the most difficult part about losing him, co-existing with the fact of his death and resisting the urge to drown in it.  Recognizing that it’s always there, that ok is never going to mean that everything is fine because James is not fine, is a challenge.  Whoever I am now cannot escape what happened.  I can and do live with it, but I’m not going to suddenly be fine with everything that happened.
Of course, this doesn’t mean that I’m better about what happened than I was a year ago. I am much better now.  I find it easier to think of all of the good times with James, and there are so many wonderful things to remember about him. He was a very special boy that I was and am honored to call my son.  We were blessed to have him. So I’m doing better.  But I’m still working on what it means to be ok. I like to think I’m at least headed in the right direction.
Thank all of you for your continued thoughts and prayers.

11 comments:

  1. I think you said that perfectly. People will ask me and I can see that they really don't want to go into dead baby land. They're just making polite conversation. Every once in a while I like to shock someone with actually telling them. 18 months after his death I still have no idea what ok means

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  2. I think of you guys often, and keep you in my prayers. Thank you for this brave and honest post.

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  3. I am guilty of asking that...but it is so hard to know what to say...the last thing I want to do is cause more harm. Thank you for your honesty. James will never be forgotten. Hugs and prayers

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  4. A dear friend lost her 14mo son to cancer...I knew she wasn't okay. Asking if she was gave her a chance to be honest just like you mentioned. Years later she reminded me that I had asked and she said she had reached "okay" but would never ever be "the same". Her son died 28 years ago this week. The birth of her second son helped tremendously because it gave her and her husband someone to share their love with. That son has always been healthy, the apple of their eyes and the recipient of all their hopes and dreams and love. It is time to take your life back because you have held your breath for a year. Relax, sigh, take deep cleansing breaths and create new life that you can share all your love with. James will never be lost from your heart but you can share your heart with someone else. I have prayed for you and Kara since first being alerted to your situation with James, they won't stop.

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  5. Debra, you give very good advice.....but I'm fairly certain that every single person reaches that place (to begin to 'practice' a different emotion, not keep it quite so alive, be willing to let the "LIFE" of that deceased child NOT be their focus for so much of a part of their day) at their own time. (smile) I think we often think our emotions control us, without realizing how much we 'allow' or control our emotions, just by the things we choose to focus on. If you think about it, our whole lives are just a representation of what we chose to focus on in the minutes we had. I also pray daily for this family. In a way, sharing how great a love they all had together with us, the global community, may be a detriment to their own healing process. But here's what I know: they did have a magical love together; they will never be able to 'replace' that exact same experience; there is so much more love still alive in their lives, bodies and souls; even those of us who have lost loved ones and children of our own - no one still though, KNOWS what your experience is like; and lastly, when you are both ready to let Jamie be what he now is, a part of your past and allow life to continue......well then you will. I hope it will offer you comfort somewhere in your soul, to know, that no matter how long it takes....so many people uplift you and Kara (and James) daily.

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  6. Jesus! You have an amazing way of expressing yourself. I mean, seriously - you are an incredibly gifted writer. It sucks that it is about such a sad and heartbreaking topic, but you have meticulously described the range of emotions that I too have experienced since losing my infant daughter three years ago (she was 2 days old when she passed). I love your blog - thank you for sharing your journey through grief.

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  7. Debra that is perfect advice. They need to create a new life to focus all their love on. James will never be forgotten or replaced. It's ok to move on and still remember. Go enjoy life again in honor of your son.

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  8. Still thinking about you all and still sending lots of hugs.

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  9. My name is Brian. I know you don't know me, but I have teared up as I read posts on your blog. I have no way to fathom what it feels like to go through what you are going through.

    My thirteen year old daughter Sydney is fighting cancer currently, and my heart has been broken by her illness. It is a kind of rare soft tissue carcoma, called MPNST, and it is associated with her Neurofibromatosis, NF-1. Her mom has it, and She has it.

    We are cautiously optimistic that her second surgery in May has been successful and that they were able to get it all out. She will be having an MRI and other tests to be sure, but we are optimistic.

    I say all this because I can not even begin to know how it feels to lose a child. I am profoundly sorry to any parent who has experienced this unhealable pain. I am profoundly sorry to you, and I have already begun praying for you and your family, in the hope that you will find a little relief.

    Feel free to write or whatever anytime you want to cry or just say hi.

    Brian in Milwaukee

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  10. they did have a magical love together; they will never be able to 'replace' that exact same experience; there is so much more love still alive in their lives, bodies and souls; even those of us who have lost loved ones and children of our own - no one still though, KNOWS what your experience is like; and lastly, when you are both ready to let Jamie be what he now is, a part of your past and allow life to continue.....

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