My House, My Thoughts
"Remember Talk About - ME!"
By: Vickie Fetsko - April 2002 ©
Within the past year, so many new families have come to the PWSA-OH for information and support. For a family with a newly diagnosed child with PWS the first year can be a hectic, confusing and an emotionally draining one. For this reason, I felt the need to write about our own experience and hope that each new family is able to reach out to receive the emotional help that they may need. Also, to remind our current families to remember back to when they first got the diagnosis and to continue to help in supporting all these new families.
Typically the questions asked to new parents are "How is the baby?", "Is he/she sleeping through the night yet?" With a family that now has a child with Prader-Willi syndrome, added questions are asked: What is wrong? Prader-Willi what? When’s the next doctor appointment? How are you? If the family is very blessed and has great support like we did, they also hear: "When do you need me?" "What can I do to help?" "Do you want me to go with you?"
The question "How are you?" is what I want to focus on. Personally, when I was asked that question I typically gave the standard, "Fine, just tired". The diagnosis was too over-whelming for me to deal with most of the time. I was afraid that if I answered true to everyone that asked me, I’d just be a blubbering basket case. At times my own husband didn’t know how low I felt. I’ve since found out, he had some low times too. All conversations centered on Jason and his diagnosis. It was important to us that Jason receive the best care available and to do that, we needed to find as much information as possible and discuss everything. What we lost and forgot in the first year and a half of Jason’s birth was ourselves.
When someone says "How are you?" - tell them. When your wife says to you "What are you thinking about?" - tell her.
I apologize now to anyone that doesn’t appreciate the comical storytelling of country music as much as I do. There is a wonderful song on the radio right now that states:
"I love talking about you, usually. But occasionally, I want to talk about me, want to talk about I, want to talk about number one, Oh, my, me, my – what I think, what I like, what I know, what I see, what I feel – Oh I like talking about you-usually, but occasionally – I want to talk about ME !"
I know we all love to talk about each of our kids, but I just want to remind you – "talk about ME". If you are a friend or relative, ask the parents how they are. You may get the standard "I’m fine", but sometimes you may get more and just listening can be a wealth of support.
Take Care and Talk.