Newbie

[Father_x]

Hi there
Just found your site a couple of days ago when I was browsing for information on a FaceBook group for craniosynostosis. My daughter Léah was operated in May 2005 and I still find myself burrying my head in my hands thinking about those frightful days leading up to her surgery. Never thought it would have such a longlasting impact on me but it has. I guess that's part of the reason I spend time on forums like this one, trying to help in bringing the stresslevel down in parents whose kids will undergo this kind of treatment.

My wife and I rarely talk about this and when we do it is mostly about practical issues like when do we book the next appointment and similar things. It is strange in a way as we have a fantastic relationship (been together for 11 yrs now - btw Léah was born on our 8th "first-date-anniversary" - married for 4 1/2 yrs) and we can, and do, talk about e v e r y t h i n g! But for some strange reason none of us bring it up. Therefore I am also using this type of forum to vent my own feelings.

Anyways, I'm Swedish with an Indian wife and we live in France! We're both in our mid-30's and enjoy life here very much. Our kids are now 3 yrs old and 4 months old.

Looking forward to getting to know you all and spending some time her on your forum.

Brgds
Father_x

[Katie]

Welcome to Cranio Kids Father_x! I'm so glad you found us and are sharing your experience. It's always so helpful for parents going through diagnosis and pre-op to hear experiences from others that have been there.
It's also great to see more and more dad's on the board as well! Welcome again, we look forward to getting to know you!

[jenniferann75]

Hello and welcome to Cranio Kids!!

[Janet]

Welcome FatherX, my daughter had surgery for metopic on Sept/26. I'm glad you found us. This place is wonderful, it helped me get through the toughest year of my life.

[charliesmummy]

:welcome Father X! This is a fantastic site & i couldnt have got through Charlies surgery without the help & support of all the wonderfull people on here. Looking forward to getting to know you & your family x

[mrs j]

welcome father x isnt this site brilliant, i am in a similar situation to yourself my son hasnt had surgery yet, but i think my husband would rather pretend nothings wrong, he doesnt like to talk about it too much, were as i cant think of anything else, look forward to getting to know you better, i dont think theres too many men on here, so its nice hearing things from a dads perspective too. x

[Tamz]

:colors Father_x this is a wonderful place I come in and read the stories and remember my own surgery. But I know there is so much support here and I know that I am comfortable talking about my own experience as wellas learning about others' experiences again welcome to cranio kids.

[melsch]

:welcome This site is wonderful! I hope you find it as comforting as I have. Thanks so much for sharing your story! As a mom that is quickly approaching her son's surgery date, I find it helpful and comforting to read the stories of those that have already made it to the other side. Welcome again!

[Father_x]

but i think my husband would rather pretend nothings wrong, he doesnt like to talk about it too much, were as i cant think of anything else

Mrs J
I very much doubt that is the way to go about things before the operation (or after for that matter). I am certain that it would be to the benefit of both of you to talk about it and to share your concerns and worries with each other. We did nothing but talk about Léahs condition and the operation for most of the 6 months between birth and surgery. I am sure we overdid it at the time, but I sure would like to talk about it now too, every once in a while!


:colors Father_x this is a wonderful place I come in and read the stories and remember my own surgery. But I know there is so much support here and I know that I am comfortable talking about my own experience as wellas learning about others' experiences again welcome to cranio kids.

I suppose having had the surgery relatively late (as far as I understand, most surgeries - if diagnosed in time - are done before the age of 1yr?), your experience would have been very different from that of my daughter. Still curious to know how your friends and school mates reacted to your surgery. Not necessarily immediately after but even after you had recovered completely. As amazing as they are, children in general, they can also be vicious and mean when it comes to other youngsters that are not as the others.

I am dreading the day when Léah finally realizes she has a huge scar across her head and will start asking questions about it, or even worse, if some of her friends sees it before we have had a chance to tell her what happened.
Any of you out there that have gone through this and have an idea how to tackle the "problem" (if there is one). I really do not want her to even think for a second that she is different from anyone else because of her scars and the operation.

[Tamz]

I really don't think kids will be vicious or mean though they will probably ask what happened, I was taken out of school for 3 years. my closest friends knew and understood what was going on, I did have a few kids make fun after the surgery because I was both bald and had a "frankenstein" scar but I explaind what happened and most understood. being a teenaged girl was very hard but I had family support and prayers and I made it.

[mrs j]

Father x , i think the lack of communication has been because we have been waiting for surgery for nearly 3yrs, but we have had a breakthrough and have been refered to a different hospital, which hopefully we will be seen before christmas, my husband just seems to be terrified by the whole surgery thing which is normal, but i wont let him keep things to himself for much longer . As for the scar thing, i often think of that wondering if Bradley will get picked on or teased because of it, as you generally keep a boys hair short it would probably be quite visible, who knows.

[sarahob]

Welcome to CranioKids! It's great to see a dad on here. Thanks for sharing your story.