AIBU to not want to be part of the community?

[hungryhippie]

Hi,
My son is now 5 and had a liver transplant at 4 months old. It was a dreadful time, where we spent the first year ofhis life in hospital, right from birth. He had 2 weeks left to live when they finally gave permission for my husband to donate a section of his liver to him, as nothing was available on the organ register.

My AIBU is, am I being a bad parent by not being involved in the transplant "community"?
My son knows exactly what happened to him and we keep in touch with a few other children who have had similar issues, but we don't get involved with the transplant charities or talk about it very much at all. Other parents I know in the community, raise a lot of money and attend all the events going. Their Facebook walls seems to be inundated with posts about transplant and the donor register. I don't do any of this at all.

My reasons for not doing so are that it reminds me that my son nearly died and that he still may take a turn for the worse, and get rejection and die. I feel on edge reading the posts of other "transplant parents" and just want to focus on 'life' and not dwell on what may happen. It causes so much anxiety for me, when I read posts about children getting ill and dying. It's a really big trigger.
Like I said, my son knows what happened and understands and he also has a few peers who have also been transplanted.
AIBU?

YANBU for wanting a normal life, OP.
Maybe have an annual event/donation, and don’t dwell on it for the rest of the year?
When your DC is old enough, he might want to do fundraising.

YADNBU.

We do celebrate the anniversary of his transplant. He's like the queen with 2 birthdays 😂
He honestly knows the ins and outs but I really hate dwelling on it.
Lots of the parents I know, talk about it all the time on social media. So much so, I have a few on hide.

Maybe that’s their way of dealing with the enormous stress and fears, but I think I’d be like you - trying to put it behind.
And while it’s good to be open about it, I don’t think it needs to become the child/family’s ‘thing’.

Definitely not BU. It must have been such a traumatic and terrifying time. I can completely understand not wanting to keep re-living it.

YANBU. You have to deal with it as you think best, and there is no blame attached. There but for the grace of God...

7Worfs I think it definitely is some families way of coping. They immerse themselves in everything transplant. I just can't handle seeing them sharing posts of kids who didn't make it or kids who are still waiting. It's soul destroying.

YANBU
We have a DD with SN. Some of the other parents are really big on being part of the SN parent/carer community and I wholeheartedly respect their desire for support it brings, but it’s not for us.

My mum had a kidney transplant and I think I err more on your side tbh. My sister is definitely more like your friends but I think we all have our ways of dealing with things and yours and theirs are all perfectly valid.

Yanbu I could of written this post. My son had a very similar start to life and still has on going health issues with more surgery in the future.
I joined these groups but have now unfollowed them for exactly the reasons you have given.
I have anxiety and these sites make it worse, it's wonderful to see positive posts but I can't deal with the others.
We also want to give him as normal life as possible and I feel going to these events doesn't do that. If he wants to go when he is older then I will take him x

ZJSH it's exactly how you say. When it's good, it's good. When it's bad it's awful.
The final straw for me was when some child went in for routine surgery and never came back. I was a mess for days and my husband said it's best to delete the group. He was totally right. I've felt so much more positive without it.
I feel, as long as my son knows what is wrong with him and knows others the same, then that is enough for now.
He has an op next week which he is fully aware of, but these groups and parents scare me to death!

I totally understand.

Hope things work out.
Don't want to say whom but several v close have lifethreatening cardiac problems. Initially I was quite involved, but social media took over and daily you had fine details of every test and the whole thing became obsessive .
Family are working and living and focusing on that and have no idea of facts and figures. To be honest it was difficult at times when ones posted about getting bladdered ( the general term used) and next they would be in hospital posting about all the tests and figures and such.
So I think just enjoy life and don't feel bad or anything. If and when your dc wants to make that choice then that is up to them .
It is an emotional journey and you do not need to do anything apart from what is right for you.

hungryhippie I hope all goes well for you next week. The build up to surgery is just awful, I didn't suffer with anxiety until we started this journey and I'm trying to control it but sometimes it just takes over. X

Don’t feel guilty at all. Having had a transplant shouldn’t define your son, it’s just something that had to happen to get him better. My boys are autistic, but I don’t do the whole ‘autism mom’ stuff on FB - if some people need that then fine, if you don’t need it then that’s fine too

Definitely not unreasonable. My Dh has a kidney transplant. I joined a Facebook group while he was on the list because I had few people to talk with about it, thought anonymous people would be useful.

After being accepted, I read about two posts and immediately left the group. I think for similar reasons to you!

I can completely understand where you’re coming from. Your son is his own individual person and not only “the boy who had a liver transplant”.

It’s great that some families draw strength from the bonds of their shared experiences but it’s equally okay to say that’s not for me.

YANBU At all.

My ds has ASD and I am very much not part of the community. I respect the decision of other parents to volunteer/fund raise etc. but I have chosen to engage in other charities.

Maybe as your child gets older he may want to reach out to the community.

Don’t feel guilty. My Mum had a transplant a few years ago and whilst I often think about the donor we don’t dwell on that time. It was so hard to watch her suffer and deteriorate and feel so helpless in return. We celebrate her ‘Liverversary’ every year and I follow some groups on Facebook in a lurkio fashion but that is it.
The way I look at it someone died and that gave my mum the opportunity to live and live she shall not sit in the shadows remembering the dark days.
Good luck to you and your family x

YANBU. Do what works for your family. Some people find it helpful to be part of a particular 'community' with certain experiences in common, and good luck to them . Some people are more reserved and private, and draw the support they need from family/friends rather than randoms who just happen to have the same specific problem but nothing else in common with them.
And, of course, these groups also have one or two members for whom the trauma/illness/event was the only interesting thing that ever happened to them and they are going to want to milk it for the rest of their lives...

I hope your mum is doing well Monsterpage we like to celebrate the liverversary too. His school were lovely this year too, they sang happy birthday to his liver he was so pleased.
He has participated once in the transplant games, which is like the olympics where they do sports. He liked it, but even that had me in tears. Awards for people who have died and a memorial for all the donors. I just can't cope. Terrible for my mental health.

YADNBU OP - Not the same but my twins were born extremely prematurely and very low birth weight so spent several months in NICU, then out of hospital my DD was on oxygen (following bronchiolitis and her right lung collapsing) and a lot of medication for a year. I don't immerse myself in the groups or communities online or IRL because I just want to be a family and move forward with our lives.

If I see a post on MN from anybody going through similar I will share my experience if I think it'll help, but otherwise I'd rather talk of DD and DS as they are now .