Hi guys, I'm sorry I haven't been round much lately - things have been really hectic here.

Yesterday my best friend had some absolutley devastating news - She found out that her 4 week old baby boy has a severe form of Spinal Muscular Atrophy, called Werdnig Hoffman Disease.. and they don't expect him to see his first birthday She and her husband are the BEST parents I know, they're both incredibly kind, patient and loving people who would do anything for anybody.. I'm so MAD at the world right now, how can this, the cruelest of things be allowed to happen to such wonderful people?

I really wish I knew what to do or say - she knows that I'm there for her, but I feel so completely useless. I don't want to intrude on their grief but at the same time I really want to help them. Does anyone here have any experience of this type of thing, who could advise me on how to 'be' with her.. should I call her? Should I leave her alone? Should I do something practical, like cook them a meal and take it round?...

MrsGoodnight said:

sounds like a very difficult situation for you and a heartbreaking one for your friend...
even if she knows that you are there for her, remind her of that and surely she'll reach out in her own way, at her own pace....
and the idea of cooking a meal is always a good one...

MrsGoodnight said:

Sorry to hear that, I would call her to see if everything is OK. If she needs anything. I would try to not bring up the baby's health condition unless she wants to open up and talk to you about it. At times like these parents want to grieve on their own, but be there if she needs someone to talk to.

I think the idea of cooking a meal for them is really sweet. Looking after themselves will the last thing they're thinking about right now so a meal would be a great idea, drop it off and leave them to it. If someone did that for me it would make me realise they were looking out for me.

That's sad. I think the best thing you can do is to just be there as a friend if they want to talk about it. but Don't act all gloomy around them because that will not make them feel better or make the prognosis any better.

I hope you will find the most appropriate way to be close to your friend

it would seem difficult because it would seem the disease has control.

so, how do you cater to the disease?

well, really... who wants to do that??

since you want to be in a position of service, do that, and: find any opportunity to welcome, help with and love on the baby. the doctors will give attention to the disease. whenever the parents want to talk about the condition.....you'll be there to listen, ask questions, etc.


thats how i would .....

Be there for them if they want to talk. It is devastating and heart breaking. Help them out like you say by making some meals for them, doing errands.

Oh my!

you are a good person, im sure you will find something to help your friends.

cooking a meal/meals is a great idea, ppl still need to eat even when faced with trying times, and it is one less thing they will have to think about. Maybe a few easy meals that can be frozen and re-heated when required.
It will give them more precious time to spend with their little boy.

MrsGoodnight said:

do this, it will be much appreciated

I don't have practical experience in this matter, but I've read what grieving folks have said. They NOTICE that their friends avoid them and don't know what to say . So seek out their company as often as you always have, maybe more, maybe just to regularly bring them a casserole. Be there for your friend. Hug her A LOT. Don't bother with advice, what can you say that will make it better? Nothing. But your love and your presence and practicality will be much appreciated.

After the fact, it might hurt to talk about their child for them, but it's good for them to keep the memory alive and that you don't AVOID talking about him. You remember him and how beautiful he was. Ask questions, laugh about funny things he does. Remember everyone grieves differentely too. Let them take as long as they need to.

I have experience with this.
Don't ignore them, Be there for them, be willing to learn about the whole process they have to go through, listen when they are ready to talk. distract them when they are too down. Feed them yes, but they need to unwind and relax with other people too. Life goes on despite the illness, they need a little normality.
Cry with them and laugh with them. There are going to be some amazing moments and some wonderful memories along with the painful ones.

Try to be sensitive to the way their emotions are changing.

They will love you for caring.

Check these out:

http://www.jtsma.org.uk/



http://www.ninds.nih.gov/...tm#What_is
[Edited 9/27/09 3:20am]

Devastating news

Hi guys, I'm sorry I haven't been round much lately - things have been really hectic here.

Yesterday my best friend had some absolutley devastating news - She found out that her 4 week old baby boy has a severe form of Spinal Muscular Atrophy, called Werdnig Hoffman Disease.. and they don't expect him to see his first birthday cry She and her husband are the BEST parents I know, they're both incredibly kind, patient and loving people who would do anything for anybody.. I'm so MAD at the world right now, how can this, the cruelest of things be allowed to happen to such wonderful people?

I really wish I knew what to do or say - she knows that I'm there for her, but I feel so completely useless. I don't want to intrude on their grief but at the same time I really want to help them. Does anyone here have any experience of this type of thing, who could advise me on how to 'be' with her.. should I call her? Should I leave her alone? Should I do something practical, like cook them a meal and take it round?...

that will be much appreciated and if you can do it for a few days or order food for them and have it delivered it would be appreciated as well- .

Take them out to take their minds off thing as well.
[Edited 9/27/09 3:51am]

Oh no.

Sorry to hear this.

I am sure that cooking would be very helpful. Just let them know that you are there for them if they need anything.

Sorry 2 hear that.

oh my! that is so sad. I just read up on it...I had never heard of that b4.

as far as what to do for them, gosh, just try and be there for them as much as you can. No matter if it's uncomfortable for you.
One thing I've found in other situations...is if you ask people if they want help or what can I do...they will say "oh nothing" or "we're fine" but that's usually just cause they are either so frazzled they can't think of something specific or they don't want to be a bother. So just do what you feel you should, like make the meal and bring it to them. Rent them some movies, depending on how close of a friend you are, look in their fridg...do they need milk? bread..whatever. Even just visiting more often will help them.
I'm so sorry for you and your friends and that poor sweet little soul Children should NOT be sick...it's just so unfair.
Check out Alazing.com it's cooked meals deliverd anywhere.

My Aunt (who happens to be a nanny) had a baby that was diagnosed with a similar disease. I remember my aunt mentioning that some friends could not find the right words to express their feelings, so they said nothing at all, or ignored them all together
It is a very sad situation, I think they would appreciate some words of encouragement, and offer to be there to vent. Just stopping by with a hug and showing them some love is always appreciated. I'd call first though.

^^^^

I just read up on this disease, it is exactly the disease that the child my aunt cared for had. He was a beautiful little boy, he lived to 13 months. My prayers to your friend.

ZombieKitten said:

100% Agree

maybe he (baby) will defy the odds. you never know.

Hi guys.. Thank you SO much for all of your messages - you're a fantastic bunch, you really are! Reading through your messages I was pleased to realise that I've already been doing most of them anyway.

After having a long chat with them I asked how they would like us to 'be' with them and they said that they would like some normality, so I fed this back to the others. I also spoke to our friends and we came up with a list of things that we can do to help - we have put money together to send them to the beach for a weekend (something that is very important to dad), we also put money together and I have been to buy a scrapbook, papers and embellishments, photo frames and albums, and I've bought a small wooden cheat that I'm going to paint blue and put his name on so that she can put her memories in. I've also got her a compact photo printer. We thought that it was important that we help to store the memories as well as create them. Another thing that was important to them was to have an early Christmas, so we're throwing a christmas party at the beginning of November (to coincide with bonfire night so that we can have fireworks too!). We're taking it in turns to take meals round and are planning nights out for them - nothing too debauched but something to give them a few hours outI've also had a word with one lady in the group (who is frankly a pain in the ass) that she needs to keep her own emotions in check as she's the sort that would loose the plot in front of her and the poor mum would find herself having to comfort her ( ). We've all agreed that it is acceptable to shed a few tears with her but keep it in check... And she doesn't need to see the pity in our eyes when we look at him - we should just enjoy him the way we normally would

I just hope that I'm doing the right things. The thing I REALLY wish I could do is to be able to give them enough money so that dad doesn't need to work, so that he can stay home and enjoy every minute of his baby boy's life...