Tuesday, May 17, 2011

Cleft Support

I have recently found the Cleft NZ Inc Facebook page, and have been loving the conversations that we have been having on the closed page.... I joined it a while ago, but they recently changed the format so that we get a email everytime someone posts a message on the page. 

I guess this can mean that your mailbox gets overloaded with comments and posts, but this has also worked well for connecting parents together, when one is in need of answers.

I have already used it to ask questions, even though middle B is 7yrs and surgeries are quiet for the moment, there are still issues which have been good to get feedback on.
But best of all, I have been able to offer advice, where needed and offer my stories, and photos of when B was little.

There have been many coffee groups over the years, all of which I have been invited to, but all that had been out of reach, so therefore living rurally, I found myself very lonely when it came to the daily life of having a child born with a cleft lip and palate.... if only there was this facebook page when I was going through this roller coaster of emotions, it would have made a huge difference to my mental state at the time. 

Sure we had great family support, but unfortunately they were to far away, and often in the times that I needed a hug. 
I also had plenty of concerned friends, and aquaintances, but after a while I felt that I had to answer their questions " How are you? Hows B? is there any more surgeries?"  with very short answers, anymore and I could see their eyes glaze over.  Really they were just being polite. 
Of course there was one or two in the local mothers groups who were genuinely concerned and interested, but from my experience I reverted to the standard short answers. 
So to finally find this group on facebook, has been a real boost to me lately, as even though, middle B looks to be like any other cheeky 7yr old boy ( which he IS! ), there are still many more medical appointments and upcoming surgeries to come.

So if you are happening upon this blog and know someone, or you yourself are dealing with this on your own, I highly recommend joining this group.
You can access it via this link faceit.org, go down the page to " Talk to us" and you can find the links to register for this closed facebook group.  If you look on the same site, you will find there is also a facebook page for your teens or adults who can connect others who have been born with clefts.


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