PWS Siblings Group reflections: “They get it!”

Photo Caption: Jenn with her sister Diane

“For the first time in 26 years of having a sister with PWS, I felt ‘They get it,’ after one meeting…”

Last week, Katrina Kozak (Director of National Outreach) wrote about our PWS Siblings Group. Today we’re honored to share the reflections of one of the participants. Jenn, thank you for your openness in talking about your experience meeting others in a similar situation:

•What was your first thought when you heard about the Latham sibling zoom?

When I first heard about Latham Sibling Zoom, I was so excited. One of my first thoughts were, “Finally! Something for us!” So many seminars, education and resources are geared toward the individual or their parents (understandably), rarely are the siblings included.

•What has been the best piece about participating in the Latham zoom meetings?

Hearing other siblings’ stories or experiences that are similar to the ones I have gone through have been best part of the Latham zoom meetings. Other siblings can relate to those exact feelings about a story that maybe someone outside of the PWS world would never understand or may cringe at. I feel a weight is lifted off my shoulder when I am able to share the stories of my sister and another sibling is able to say, “Yup! My sibling did the same thing, listen to this!” While other family and friends have always supported those funny and not so funny stories, the PWS siblings understand these stories.

•Has there been a topic that was the most helpful so far?

Hearing older siblings talk about how their PWS sibling has changed as they have gotten older has been one of the most interesting topics for me.

•What would you say to other siblings that are new or who haven’t been able to connect as often?

I know for me my sister is one of my most sensitive topics. I can understand how the thought of it could be intimidating; that you are going to surround yourself with people that you have never met before to talk about one of the most sensitive topics in your life. Am I going to cry? Am I going to talk? Am I going to laugh? All of those emotions went through my head as well. I instantly felt comfortable when I joined. No one is there to judge you, we are here to listen and relate. For the first time in 26 years of having a sister with PWS, I felt “They get it,” after one meeting.

•What one thing would you want providers to know who are working with your sibling?

I appreciate you more than you will ever know.