How to support friends with a dying child?

February 17, 2010 2:10 AM

What to do for friends with a dying child?

My married college friends were pregnant a few months after we were, living across the country. We communicated a lot about baby stuff then and after the babies were born.

Yesterday I got an email that the baby, now about a year, has a genetic condition that will result in her death between 18 months-3 years of age. Starting NOW all developmental progress ends and the baby will go into decline.

I feel awful. I couldn't sleep last night. I guess it is a mix of survivor's guilt and sadness.

What can I do for them? I replied to the email sending my love. I donated some money to the foundation for the condition. What can I do to be most helpful while at a distance? Gifts? Books (appropriate?)?

I have no idea what their plans are in terms of continuing to work, keeping the baby in daycare, if this is going to be a financial challenge for them, etc.

posted by k8t to Human Relations (9 answers total)

All parents want to document their children's lives, through pictures, video, journals, blogs, etc. Your friends might appreciate a gift that will help them do that with their child too. Maybe a gift certificate for a session&prints with a good photographer in their area (do some research on this; a local support group or meetup group for parents of children with disabilities or chronic diseases will have recommendations).

You might also want to start sending the baby a series of cards/letters/small gifts via snail mail, from your family or maybe from your baby (their baby's "friend"). Email is great for conveying information but not so much for the warm fuzzies. Their mailbox is going to be filling up with insurance updates & medical bills, and it will be a treat for them to occasionally open the mailbox and see an envelope/package from friends.

First though I would follow up on your reply email with a phone call. Among all the other things they will be going through in the coming months, chronic disease & death are incredibly isolating. The more human contact the better, and IMO email just doesn't cut it.
posted by headnsouth at 2:48 AM on February 17, 2010 [11 favorites]

I second the phone call and all the rest of headnsouth's advice, but add to ask what they need. Find out what their baby likes. Maybe the best thing to do as a second step is to make the avenues of communication open, for it is as already noted a dreadfully isolating experience.
posted by bwonder2 at 3:09 AM on February 17, 2010

Agree with the phone call and asking them what would be of help.
For us people brought in meals, helped with babysitting the siblings and gave to charitable organizations in her name.
Please don't try to comfort with a lot of words. It is better to be sympathetic, keep your mouth closed and listen with kind ears.
There will be painful things going on that they may not want to burden their families with, but they may share with a friend.
God bless you for caring.
posted by srbrunson at 3:32 AM on February 17, 2010 [4 favorites]

Srbunson gave sensible advice : I'd recommend to listen to them, and don't say much since whatever you're going to say may be completely out of synch with what they experience at a given moment and what they feel about it. Allow them to be reclusive and don't try to force them into dialogue but send an email once in a while to show them that you're available for them. They might be jealous of your family and might also feel some guilt about it so don't worry if dialogue isn't totally easy. I wouldn't recommend to send them many personal news about how life is going for you and your baby. Let them recover and travel that road.
posted by nicolin at 5:00 AM on February 17, 2010

Mefite bunnycup went through a similar experience with her daughter and chronicled it on this blog. It can be heartbreaking to read but it might help you get some sense of what your friends are feeling and things that may be helpful.
posted by TedW at 5:17 AM on February 17, 2010 [1 favorite]

Response by poster: Via TedW's link to bunnycup's blog I found this organization. For future readers of this thread, of course...
posted by k8t at 5:36 AM on February 17, 2010

Stick around after most people seem to have forgotten. There will be an initial outpouring of grief and support, but in it's the months and even years down the road (when they're supposed to have "moved on") that your phone calls and emails and visits will be invaluable.
posted by sallybrown at 7:02 AM on February 17, 2010 [5 favorites]

One of the best things I ever read (and considered) is that we all need "psychological air". Your friend should be allowed to talk and talk and talk about the situation without interruption about whatever is on her mind. Our tendency is to interject with lots of ideas about what to do. Your friend will get tons of advice that won't really help her. What she REALLY needs is to be listened to. Be that kind of friend that just listens. Allow her to say whatever she wants. This is a very grim situation and most people will want to gloss it over with statements like: "Oh, everything will be fine! There's always hope!".... when there is no realistic hope. I'm not recommending that you come across as negative, but faux cheerleading won't be helpful. Make it your mission to be the a person your friend can talk with about all the facets of this experience...without limitations. Talk with her often---and let her do 95% of the talking.
posted by naplesyellow at 9:26 AM on February 17, 2010 [1 favorite]

Correction...in my advice above. I should have included both parents, not just the Mom.
posted by naplesyellow at 9:29 AM on February 17, 2010