Life with Holoprosencephaly

Noon sharp and I was in the crisp blue water of the city pool, taking a little lunch break away from work, away from the kids. Of all the activities in the world, swimming has become a favorite of mine, I find it relaxing, I find it helps my body, my mood, it helps on so many levels. Sometimes it’s hard to make the time, so many ways to utilize that most valuable of resources, time. By now I’ve learned. That hour of swimming can completely change my state of mind for the rest of the day. So I swim. And I think. And I breathe.

While swimming today I realized how little the word “holoprosencephaly” actually means to me these days. That single world that turned my world upside down close to 6 years ago. In the beginning my life was dominated by that single word, it invaded my sleep, it was present through all my thoughts and conscious and subconscious minds. I remember trying to learn all things holoprosencephaly, talking to the experts in the field, networking with other families affected by this diagnosis. I believed that the holoprosencephaly diagnosis defined Nathan, and, by extension, our family.

These days I hardly ever think about it. Holoprosencephaly is simply a part of Nathan, just like a strong temper is a part of Izzy. HPE determines aspects of Nathan’s care, and of course has much to do about his limitations. I’m guessing that holoprosencephaly might also have something to do with Nathan’s gifts, with his sweetness, with his ability to be content and happy all of the time. Or perhaps that’s just Nathan’s spirit that is untouched by this diagnosis. Either way, Nathan is Nathan, with his qualities and limitations, just like Izzy has them, and Gryffin.

A wonderful friend asked, how did you get there? How did the diagnosis stop mattering?

I think last year I finally realized that by fighting this diagnosis I was only hurting myself and my family. I realized that the best thing I could do for Nathan was fully and truly and completely accept him for who he is, and instead of wasting our life chasing mirages of miracle cures, it was best to just treat him like the little boy he is, and proceed with life like any other family. Perhaps I just got tired of hitting myself on the head with a hammer and wondering why my head was hurting. Perhaps Nathan’s spirit and good nature finally wore off on me. EIther way I am grateful that the word holoprosencephaly doesnt’ cause an emotional reaction any more. It is just a word, with no power over mye, over my life. It is a great place to be.


  1. > just like a strong temper is a part of Izzy.

    Uh huh. What were you expecting? She’s YOUR kiddo! 😉

  2. sofia palmqvist says

    hey just found your page, sweet little boy you have. I myself have two children diagnosed with holoprosencephaly (Semilobar). They said that baby number 2 would be healthy but it did not happend, we live in sweden, and it has 4 children and 2 are mine. my son is 19 years old will soon turn 20 and I have a daughter just turned 18. it’s a tough life you have to struggle a lot but it gives so much back, it’s wonderful life with those kids
    Sincerely sofia

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