Wednesday, March 7, 2018

Sophie's Birthday Eve Reflections

Sophie will be 23 years old tomorrow, March 8th. Everyone says, I can't believe it! or they say, My God, how time flies! It's hard to believe that she's 23 years old! Sophie would if she could and I will tell you that it's not hard for us to believe that she's 23 years old, that we feel every second of those 23 years, that they have not flown by even for one moment, that she was a tiny baby and I her 31-year old mother in another lifetime, eons and eons ago.

We are filled up with 23 years, exhausted and exhilarated and indomitable.

Richard Engel, the chief foreign correspondent of NBC News has a very young son with Rett Syndrome. Rett is one of the many disorders that we ruled out as a diagnosis for Sophie, back in the early days when the powers that be had discovered a gene marker for it. Sophie tested negative for that particular mutation even as she had many of the clinical characteristics of Rett Syndrome. Since those days, they have found other mutations related to Rett Syndrome, but I admit to being lazy about testing Sophie for them. It has something to do with my ambivalence about the medical community, about what it means to fix and to cure. That's a post for another day.

Mr. Engel has written a beautiful piece about his experience fathering this special child and persuasively argues that his experience as a war correspondent and knowledge of PTSD parallels that of this new parenting journey. You can read it here.

On the eve of Sophie's 23rd birthday, I confess to reading the article with a bit of an eye roll -- well, not exactly an eye roll but more a sigh. I imagine that fellow veterans (war imagery always irritates me, but it's appropriate here) will understand. What struck me, on the eve of Sophie's 23rd birthday, is how innocent and heart-ripping Mr. Engel's yearnings and aspirations are and how dim his understanding of the journey ahead. That is as it should be. I don't mean just the trials and struggles, the cycles of grief and loss and anger and acceptance but rather the knowledge that comes from those cycles, and that contrary to what the psychologists tell you, they repeat themselves over and over and over. Despite the beauty of his prose and the exquisite sensitivity and vulnerability he reveals, he has no idea that he might one day, like we veterans, realize that his love for his son has absolutely nothing to do with curing him.


  1. In the trenches with you. I understand and agree. The cycles go on and on. New grief surprises sometimes with an, "Oh, there's that TOO?!" I have experienced the same Rett journey as well, including the hesitance to pursue that new research. Ugh. Forgive me Elizabeth as I have forgotten Sophie's exact diagnosis. .....

  2. May Sophie's 23rd birthday be like a day at the ocean.

  3. I am so moved by your truth, that I simply don't know what to say.

    I'll be thinking of you all tomorrow.

  4. Oh, Elizabeth. That is the TRUTH of it. I remember, years ago, my daughter caught me in the bathroom crying, with the water running. She asked me what was wrong. I said: I miss your brother. She said: what do you mean? He's not gone. I said: yes, but he's not who he was supposed to be.

    She said: yes he is. it's just not what YOU thought. (11 years old)

    1. OMG that profound statement from your 11 year old moved me to tears... I don't even have Words...

  5. I will have to read that piece you linked. Happy birthday Sophie! ❤️ Love and love.

  6. I read that article by Richard Engel. It reminded me a little of myself when Katie was first diagnosed. It breaks my heart to read it because he doesn't know how hard it's going to be, doesn't know how often his heart will be broken, doesn't know how painful it will be, over and over again.

    It's nobody's fault but it is a hard way to have to live life.

    As for Sophie, happy birthday to a beautiful young woman:)

  7. Love to you and Sophie!! You’re an amazing Mama!! 💕💕💕💕💕💕💕💕💕

  8. Happy birthday to Sophie! And thanks for the link to Richard Engel's interesting article. As you said, he seems to be feeling what he SHOULD be feeling at the moment -- the naive faith that science and medicine will come to the rescue, the twisting sense of unfairness. As time passes and acceptance grows he'll have a fuller sense of what it means to be Henry's father.

  9. It's probably a very good thing that we have no idea of what the future truly holds in so many different situations. And we mostly just don't know. We can read, we can observe, we can listen to others who have been through what we are facing and none of it will truly prepare us.
    Duh. I guess.
    I find myself a bit wordless here and so I will just say the most obvious thing which is that I hope that Sophie's birthday is sweet and warm and lovely. And that her mother can stop for one second and close her eyes and know for certain that in the past twenty-three years she has never once ceased to be the exact mother that her daughter needs. I am loving you both and pondering the beauty in your eyes and in hers.

  10. Shallow me. His verb tense mistake - I've drank -stuck out to me. Feeling for him of course.

  11. I hope that you and Sophie enjoyed her birthday. Did you get to the beach?

    Richard's article is heartbreaking. And yes, you are many many years into this with your own daughter. He will have to learn just as you have. I hope he and his wife can weather the stress that must come with this. It occurs to me, he is gone on assignment so often, it is his wife who is carrying the bulk of the load here.

    I have no clue as to what it must be like to live in your life, other than the words you share with your readers. I appreciate that you include the good, the bad, and the ugly. You aint sugar coating anything. You have let a lot of people get to know Sophie and your boys, and you, through your photos and writing.

    I root for you, my dear. And I have an inkling of how difficult it can be at times. And how much love you have for Sophie, and your tireless efforts to keep her healthy and happy.

  12. Happy belated Birthday to Sophie. The article was heart rendering, I recall, each time, when grim diagnosis are given with Loved Ones, that range of raw emotion he speaks off so early in his long journey. It is good that he is Aware early on, to try to take Care of himself and his Wife, as well as the Son... daily, moment to moment even. It is how it should be... he has the Future to become a Veteran of it...

  13. Happy 23rd Birthday to Sophie! She is so fortunate to have to have you and her brothers at her side loving, supporting and caring for her unconditionally.

  14. We can read, we can observe, we can listen to others who have been through what we are facing and none of it will truly prepare us.

    สมัคร D2BET

  15. like we veterans, realize that his love for his son has absolutely nothing to do with curing him.
    ** สมัคร D2BET**



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