Alone No More

Written by Karina Lehoux

In December 2008, my Zoé was born, and I found out a few days later that she had semi-lobar holoprosencephaly.  As soon as I could, I jumped on my cell (this was before smart phones, just think looking something up in a 1″ x 1″ little screen) to try to find anything I could about HPE.  Shortly after that, I had found out there were three types and that was pretty much all I could find.  No Facebook group I could find, just a little girl in Europe. For about a year, that is all I could find. As a single mom, hospital stays were long and very lonely).

Eventually I found Families for HoPE. Finally, there were others. People to bounce ideas with and who would support me when I needed to vent after doctors would tell us something hard to swallow.

Then one day in 2010, up popped a bunch of pictures of a conference that had just ended. I was crushed, especially when I found out the next one was two years away.  Little did I know that the first one I could attend would be 8 years later…

I was lucky because I found a local special needs community in Montreal Canada where I got support in finding solutions for daily life and friends I could actually meet in person.  And sure, it’s nice to have people who understand what it is to be a special parent, but issues can be so different that it isn’t the same as meeting other HoPE families.

As I walked into the conference center that Sunday night in 2018, seeing all those kiddos–some I recognized, many I didn’t–but, it felt like I was home with “my people”.  I could barely hold in the tears. Happy tears.

When I heard someone call my name and I saw a mom I had been chatting with online and her girl, I just broke up in tears.  I barely had time to catch my breath until I heard my name again, and there was another mom and her girl. Those were two I’ve been talking with online for a long time and seeing them, hugging them, getting to finally meet them, I cannot put it into words. It felt like being reunited with long-lost family. I just love this picture of the 3 of us and our girls, this is just real, our reality at least… and a year later… it still brings me so much joy to see and remember…

You can’t fathom how it is to be with people that truly get it.  When you sit in a conference room, and you see blankets popping out and suddenly kids being laid on the floor.  Or when you hear the sound of suction machines, and no one looks or if they do, it’s with a smile, because everyone just accepts your child as they are.

You see yourself in all those parents and you just know that here and now, you are the norm. Here and now, there are no special needs.

I’m so excited to repeat the experience that I think I was the first one to register for the 2020 conference. I can’t wait to go see my friends, my people and meet new ones…maybe you?



One Comment on “Alone No More”

  1. This is so true and perfect…my Bri has semi lobar as well…thank you for sharing