Seeing Nathan

A lovely friend who has tremendous wisdom has been telling me for some time now that she has never really seen “holoprosencephaly” when she sees Nathan. She sees a lovely, happy child with tremendous potential. She doesn’t see the diagnosis and she doesnt’ see the limitations.

I, on the other hand, used to always see the diagnosis first. It makes me so sad that I wasted so much time. When Nathan was first diagnosed, I spent a lot of time reading and researching about holoprosencephaly. I learned everything I could about it, believing that this diagnosis in some way defined my child. I spent hours and hours and hours reading and participating in a message group of families of children with holoprosencephaly. This is one of the greatest regrets I have.

I started believing that the diagnosis defined Nathan and that Nathan could only function at the level of other kids who shared the diagnosis. So even though I was trying with all my strength to defy the odds, I was still limited by them and I subconsciously believed in them.

Today I can happily say that I no longer see holoprosencephaly when I look at Nathan. When I look at Nathan I SEE Nathan – I see the funny, happy, charming, loving, FUN little kid he is. I see the limitless being with endless potential. I see a spiritual being who has so much to give. I no longer see the statistics – 2% of kids with HPE can walk, 10% can sit unassisted, 50% have seizures. I just see Nathan.

I love this child that I am meeting! He is so cool!!!


  1. 🙂

  2. Yay for you! I love this blog. It is easy to get caught up in all of the statistics and research. It’s funny you posted this, because my husband and I were just talking last night about how we see Abby first, before any of the other things that are wrong with her. We were a little disappointed after her appointment yesterday, because it was kind of a reality check. We said that we often forget about her diagnosis, and so it is hard to be reminded of it. However, tomorrow is a new day!

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