View Full Version : Do you tell people about it
10-04-2011, 01:48 AM
im just wondering how you all deal with your child having cranio. my son is just 10 weeks old so it is all still new. we were told a little after he was born while he was in the icu that they thought he had cranio but it wasnt confirmed till last week so im still just trying to get my head around it all.
basically i keep fighting with my husband and my sister if they tell anyone about Rhys having cranio. i just dont know why, but i just dont want them tell people. i dont go around tell people about it either unless im very close to them and see them all the time and they would notice his head.
what way did you deal with it, were you open and talked about told everyone. i just want to enjoy having my new baby and i dont want the cranio to be all about him. i just want people to talk about us having a new lovely baby instead of talking about what is wrong with him.
please help share your experiences with me.
10-04-2011, 06:27 AM
I felt the same way. Close friends and family knew about Gabe's cranio but I didn't start telling other people until I could talk about it without breaking down. I was so afraid in the beginning that people would think there was something wrong with him and I really didn't want them talking about it. That was the main reason I set up his caringbridge website... It abled me to share what was going on but somewhat sheltered my emotions so I looked like I had it all together when I was a wreck. There were a lot of people who didn't find out until the week before his surgery. I sent out a mass email explaining everything with the link to his caringbridge site asking for prayers. For me that was the best way. I completely understand how your feeling because I struggled with the same issue. You want people to look at your precious new baby as just that, a precious new baby. As opposed to that baby with something wrong with his skull. Hugs mama. Xoxo
10-04-2011, 08:05 AM
I told people, but only if it worked its way into the conversation. You'd be surprised at how many people know someone that has been through it and that can be very helpful. My mom's coworker ended up having cranio 30+ years ago. DH's coworker's nephew had been diagnosed at the same time as Logan. By me being open about it at work, I was recently able to help 2 babies - one with plagio & the other with cranio. I still will bring up Logan's cranio to people. Mainly because he likes to show off his scar and I know most people are curious but too afraid to ask. I'd rather lay it all out there and move on. Cranio is a part of Logan, but it doesn't define him.
10-04-2011, 09:51 AM
Yes, I told everyone.
:hugg... It's extremely difficult deciding how/if/when you want to talk about your baby having cranio. Each person handles a crisis differently. Only you know when you are ready to break down the steel walls you eradicated when you found out the diagnosis. Inside your fortress, you feel like you can shelter your baby without criticism slipping through the cracks. At first you will want to keep this private, but little by little, you will see how many people will extend their arms to you both and offer love and support. There are some people that may make an unpleasant comment, but it only shows how ignorant they are. This is your baby...your sweet, innocent baby that doesn't deserve to have cranio overshadow the first few months of life. It won't. It may seem like it does, but it will only become a building block to make him stronger.
10-04-2011, 11:33 AM
Hi,I tell people about Jude's cranio, if like Cindy says it comes up in conversation. In the beginning I found it awkward that my baby was 'different' but now I have got used to the idea myself it doesn't really bother me anymore. Jude is a baby who happens to have cranio but there is so much more to him than that :-)
10-04-2011, 02:18 PM
My issue wasn't so much about telling people he had cranio, although I followed the same approach as some of the others, I only would talk about it if it somehow came up in a conversation. To me, the harder part has been dealing with the helmet because its very easy for people to tell he's different. Usually, I see a lot of people looking at him and most appear afraid to bring it up. Some people will ask and it doesn't bother me to share with them. I think its the people that assume he's not a 'normal' kid because of the helmet that really get to me. In every other way, Cooper is normal (so far) so it is hard for me to have people judge him by the helmet. I guess the good news is that he won't remember the helmet or the looks he got while wearing it...
10-04-2011, 04:35 PM
You have to do what feels right to you. You may find that it becomes easier to talk about as you move through the process. You may prefer to keep it inside through out the entire journey. It's ok. You have to do what works for you. :)
10-06-2011, 11:44 PM
We have been dealing with this same issue! Levi was diagnosed in June and we only told immediate friends and family and even that was tough! Well the news broke today! Some of my family members are doing a benefit for medical and travel expenses so the word got out! It was tough to handle all the emails and phone calls but I had to let them know... Hes gunna have a nice scar that would be a pretty big shock if I didn't say anything ya know.... I agree that you have to find the right time for you and your family... XXHugsXX becuase I like eveyone else knows how tough it is!
10-09-2011, 02:37 PM
At the beginning I only told close family members because I didn't want to talk about it all day. I wanted there to still be some "cranio-free" places. After a few weeks, however, I feel like it's all I talked about.
Do whatever feels right. Everyone has to deal with this in their own way. Your husband may feel better by talking to people and telling. Perhaps you can compromise and keep it at family & close friends & not have to tell everyone until you are both ready???
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