Good news!!! Today Nathaniel had a check up with the cardiologist. It appears his heart is functioning even better than last time. He went from every 2 months-to every 6 months, and now he’s not due to follow up for another year. If at his next visit, he’s doing even better, he will be released! Although, I have to say that I really wasn’t expecting to hear anything other than good news. I’m so excited. I meet with the geneticist tomorrow afternoon to have my questions regarding WHS answered. I’m very worried to actually hear the possibilities and prognosis for my love 🙁 He is such an awesome baby. He doesn’t cry at all, is very content with his feet, and is always so happy as long as he’s in the middle of the business….in the middle of all the noise and conversation. He’s so cute. I’m so excited that I was given this link by a friend who happens to be a special education teacher. My husband refuses to read anything about this syndrome and I feel like I’m in this alone. With this website, I’m able to actually vent. Even if I don’t get a response, I am able to get what I need off my chest. After I typed Nathaniel’s story last night, I was able to sleep….and sleep good. For the past week, all I could do was think and wonder because I didn’t have anyone to talk to or vent to. With this website, that’s all I want to do! My husband just wants to continue thinking he is 100% normal. I think it is a good thing, but I just don’t want him to be upset or surprised in the future when and IF he isn’t. In the back of my mind, I want to think the same way, but I also want to be realistic. Either way, I love him with all my heart. My poor(other) kids…I know feel jealous, but they know he requires more attention than they ever did since he’s still a baby and they know I love them just as much, they just don’t get as much attention. Yikes!
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Hello Letty, first of all you are not alone. You will gain many wonderful friendships on this website even if you never meet in person. I have heard of other husbands, who like yours, find it more difficult to read up on WHS. As a grandma I want to encourage you by saying that everyone has their own journey as to when they are able to absorp the idea that their precious baby is special needs. It will come in time. And I’m so happy to hear of your good news! I can totally relate!
That’s great news on the cardio!! Hope the good news keeps coming your way. My husband at first refused to believe that our son had WHS but as time went on his view and attitude towards everything has chagned. To get through some of the hards days, I even tell myself that our little guy will be different because that is what works for me.
That is fantastic news! I’m glad you’re sharing your story.
You know, I didn’t research much online at first either, and I think it was a good thing. I only had a one-page description of WHS–loosely outlining potential issues–and a meeting with a very open, encouraging geneticist who thought Fiona was on “the better end of things.” Gradually, I began to research, and seeing some of the realities of other kids helped me face what we might face. It was a shock at first, and I grieved, and am still grieving sometimes, but I’m glad I took it all in my own time. And I also know that these kids are each individual, and nothing on the internet will tell me what Fiona’s life will be like. Your husband might just be doing the same–taking Nathaniel in for who he is, and not letting the info-overload that is the internet overtake life with his son. In time, he might find that he’s ready for more information. There’s a certain amount of filtering that’s useful to me still, and a certain amount of research that’s also really helpful! It’s a balance.
Thank you all for your comments. They definately help. We met face-to-face with the geneticist yesterday afternoon and the fact that I asked about the poss. of MR, I think made my husband realize why I was so concerned. He let the doctor speak and soon began to ask questions about the possibilities of him walking and talking. I explained that I was expecting to have more questions unanswered than answered but just having that one-on-one conversation with the doctor and my husband made me feel so much better. My husband later asked what I was expecting to hear and I told him that I heard it. He was a little upset that most of the answers were, “time will tell.” But nevertheless, he was there and was able to ask his questions. Thank you all again for your comments!
You made an interesting observation that Nathaniel likes to be included in conversation and interactions. Individuals with WHS tend to have strong social skills. It is the way they learn. They are little social sponges. Nathaniel is fortunate to have two parents and siblings. All that stimulation can only be good for him. Writing and venting is good. It will help you cope.