After the diagnosis

In the blog comments on Rethinking what you believe, a writer, Rebecca, says, “With the initial wound of the TSC [tuberous sclerosis complex] diagnosis still fresh for us, I have shied away from examining any belief. Because, frankly, anything I have ever believed about this world now seems a fallacy.”

When Jessica was born, I remember hating myself so much . . . thinking, How hard can it be to have a healthy child? Everyone I know has done it! It’s just not that fucking hard! I wanted to rip my skin off with my fingernails.

I hated a lot of things just then: the baby books that promised you everything would be all right, and the people who chirped Things happen for a reason! If it’s meant to be, your baby will live!

I wondered what kind of drugs they were on because I absolutely wanted to be hooked up with some. Just write the name of your supplier there, I wanted to say. Just give me the happy pills, so that I can pretend that there isn’t this huge rent in the story of my life that I haven’t got the first clue how to fix.

The huge rent became a canyon, a chasm, a thing I couldn’t cross: there were people on the other side, living and prospering, talking to me, inviting me over, and I had no idea what they were saying. I had no idea what world they were living in. I had no idea how to connect with them. I wasn’t sure I even wanted to. When that hole was torn in my soul, it shredded to pieces everything I understood about the world, everything I ever believed about love and truth and justice and the Meaning of Life.

There had been no God the Father for a long time, but now there was nothing. Just a great big cosmic raspberry blown in my direction. I didn’t believe some all-knowing being put Jessica on earth to teach me a lesson. Or her a lesson. What kind of sick fuck would do that? And why would I willingly believe in such a sick fuck?

For a long time I tried to make sense of it in less religious, dogmatic terms while still looking for some spiritual explanation. But the whole “universe-in-balance” thing never quite worked right for me. If you’re going to believe in some kind of universal intelligence, you may as well believe in god, and that brings you right back to what kind of sick fuck would run the joint like this.

Finally, I made peace with the fact that the universe is a lot more random than I would like it to be. That human life, and human effort, are subject to the whims of fortune in ways that scare us, and so we try to make meaning out of them. And that is how we come up with explanations like it was meant to be or it will all turn out okay in the end or we just aren’t wise enough to understand the grand design.

But those words are meaningless to me and have been for thirteen years. If you say to me, things happen for a reason, I will look at you as if you’re speaking Sanskrit. Because I don’t speak that language anymore. I can’t. I pretend, maybe, so that I don’t have to punch people for how callous and heartless they sound. But I don’t understand that language anymore.

My daughter got a raw deal. And there’s not a damn thing I can do about it or believe about it but this: her suffering, and mine, can destroy our lives if we let it. Or we can make it mean something. We can use it to build a bridge across that chasm.

I may never speak the language of things happen for a reason, but I can speak the language of my heart. I am sorry this happened to you.

I know how you feel.


  1. Have learned through whatever happens, JOY is always there. Always. I may not see it, partake, think it's there or particularly want it at the moment.

    Tasha Tudor signed off often with, Take Joy, a favorite line from a poem. Joy is the focus but it's the other word 'take' that is an action step. Humbling.

    Garden & Be Well, XO Tara

  2. Thank you for this today – especially the last line.

    I am a spiritual person, tho not in the western sense, but what hurt me the most during my darkest days was people who said "god never gives you more than you can handle". I hate that more than I can say and still keep it g or pg rated.

    I love your writing – both the way you write and the words themselves. Please keep it coming!

  3. Jennifer, I am so with you on this one. My son suffers from mental illness that medication has been unable to relieve and there is NO reason for his mis-wired brain chemistry. Life is just not fair at times.

  4. I nodded in agreement throughout this piece. There are so many things in this world that I just can't accept as 'happening for a reason'. The older I get the more I question how anyone can believe such things.

  5. For anybody who's never experienced the full spectrum of randomness – the dark and ugly side of it – it's facile to believe there's a reason for everything. Your logic is unassailable. There's not a lot else I can say to this post, Jennifer. There's not a lot else I would have the right to say.
    I appreciate your writing and respect – and agree with – your perspective.

  6. After the usual morning doctor calls and checking of appointment times to make sure I'm actually dressed when Kaleigh's first therapist of the day arrives, I sat down for a few seconds of mindless websurfing and sips of coffee. And, as is routine, Kaleigh happily bounced up and down on the floor, busying herself with the toy du jour, blissfully unaware of any of "this." I checked in to your blog, and was quickly dissolved in a puddle of tears. But, for the first time, in a long time, not the "holy crap, I just can't take this anymore….this is all too much and is so earth-shakingly unfair." Rather, it was a "I'm not the only one….Wait, I need to say it again, I AM NOT THE ONLY ONE!…Kaleigh is not the only one" cry. I recovered from the copious amounts of tears– with help from my tragically perfect little girl, who just kept looking up at me and sheepishly questioning "ma-MA?"–and a new knowledge swept over me. The world didn't end, it just changed. TSC is the shittiest hand of cards we've ever been dealt, but when did that ever stop me from playing? So, I'm going all in and I'm going to ride this crappy hand for all it's got. And, damn it, it's GOING TO MEAN SOMETHING!

    Thank you, beyond words. From my heart, and for the one beating outside my chest. Thank you.

  7. My eldest son is developmentally-disabled and has some physical issues too. He's a wonderful, gentle soul, a true joy and I love him with all my heart. BUT he was dealt a bad hand. He did nothing to deserve his fate, nor did I do anything to 'deserve' a disabled child. Some folks say that wouldn't change anything about their child, but I would give anything for him to not have the issues he has.

    A friend had her first (and only) child late in life after many years of infertility. Her son was a 6-week preemie and had feeding issues initially, but he's perfect. He was sleeping through the night (10-12 hours) by three months and was truly the most agreeable, easy baby ever. One day she told me she 'deserved' to have an easy baby after all the years of infertility and difficult first few months of her son's life. I was floored.

    No one 'deserves' anything – you get what you get. Sometimes it's wonderful and amazing and sometimes… not so much. She got lucky, that's all. Many of the lucky ones will never realize how lucky they are.

  8. This may not be meaningful to you or to anyone else reading it…in fact, since I only learned about it a few months ago, I'm still contemplating its meaningfulness to _me_. But here goes.

    I took a workshop in soul retrieval last fall that discussed the idea of reincarnation; something I've definitely never thought of or been remotely interested in. In short, the idea was that souls, each of our true souls, start in the light (whatever that is to you), and their goal is to progress to enlightenment: they choose to merge with earth energy and be a life on this earth in order to learn a lesson that they've chosen to learn or that another in their group of souls has chosen to learn. Forgiveness, death, love, courage, trust…anything you can think of that a person could learn in a life, this is what the souls are committed to learning. So they choose a life, the start of one anyway, and try to learn it. When that life is done, they return to the light and do a review of sorts…and decide what to do next; did they learn the lessons? or do they need to learn more, to do them again?

    I'm not a religious person, so talking about this at all, especially to people I don't know, is very weird. But your post made me think of the class, and how it planted the germ of an idea in my head: not that "things happen for a reason (and likely someone _else's_ reason)" but "somewhere, somehow, I chose this to happen for me. I don't know why, and man, does this suck ass sometimes, but okay, here goes." Or that "okay, someone else needs to learn this, so I'll help the best I can." It's not a platitude; it's a different way of looking at it.

    It's obvious that you _have_ found a different way of looking at it; your life, your daughter's, everything. I just stepped out of the woodwork to offer something else. I hope it doesn't sound as shallow as "things happen for a reason" does to you and me both. It's not meant to, and if it's offensive, I am truly sorry. For me, it is meaningful to think of a larger picture in that way. I know it won't be for everyone.

  9. I'm going through a really big and calamitous life change. It's not as mean as having a child be diagnosed with a terrible illness. But it took me to the same place you describe. The place you describe in that other gorgeous essay where you talk about rebuilding the stars in the sky the best you can after they fall down again. And honestly being in that place scared me. I don't know of anyone else who has been there. I have been wandering through it and trying to be of good cheer which hasn't worked all that well really. So I want to thank you for this. Lucky people won't get it. But reading you brought me comfort because you have found some peace.

  10. I read this a few days ago and waited to comment, hoping something brilliant & insightful would come to me. Still have nothing absent telling my long sad story which this isn't really the place for. So I'll leave it at "I get it & unreservedly & wholeheartedly agree".

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