Below is a letter from a mom that attended the 2017 1p36 Deletion Support & Awareness Annual Conference. This mom also received a scholarship from 1p36 Deletion Support & Awareness to attend the conference.
The 2017 Conference in Baltimore, Maryland was the first time in thirteen months I had left my son. As excited as I was, I was more nervous. I'm not a very outgoing person so it's difficult to just walk up and strike up a conversation. Even so I made a few more friends than I expected. I Probably could have made even more, but there's always next year!
My experience was emotional, scary, and eye opening. The first hour I think I cried six times. From sadness and happiness. Sadness because of the babies and children we lost. Happiness because of the overwhelming feeling of being with people who actually get it. They know how you feel. They have been there or are currently there. They understand the pain, stress, sleepless nights, the constant worry etc. It made me feel relieved. We all have family and friends who sympathize or say they understand. But we all know that's not always the case. You only understand if your living it.
I learned many things for when my son is older to help with behavior and communication. How to engage him in different activities. How to help and support him when his dad and I aren't around.
The Q&A session with the genetics doctors was interesting to me. I learned quite a few things. Somethings I knew already. But it's reassuring hearing that it's not your fault. It's just something that happens. I know I have blamed myself. I didn't do something right. I know now for sure that's not the case.
Seeing all the kids with 1p36 Deletion Syndrome was great and hard at the same time. It really is such a wide spectrum. I often wonder where my son will fall. But it gave me confidence that he isn't as severe as I thought and there is so much potential and hope for him. Therapy, therapy, therapy!!!
When I arrived home I was slightly sad. Not that my feelings had changed for my son. But I see him in a different light now. I see the diagnosis more now than I did before. That hurts a little, but it helps me to have more patience and understanding with him.
The conference was an amazing experience and I look forward to being in Houston in 2018. I encourage all 1p36 parents, grandparents all family and friends to attend a conference if they are able. It is amazing the information and new friends you can make. It's a big family. A support system that all of us need. This is a long road and a rough ride. But together we can help our kids overcome and be the best they can be. They are blessings and should be treated as such.