questions for those who have lost a child

[Anonymous]

Not sure where this post fits best.....my 2.5 year old is in ICU and it doesn't look like she's going to pull through this time. She's a medically fragile kid with multiple, severe disabilities, so I've been preparing myself for this day (as much as you can) since she was born. She's been hospitalized multiple times since September and we've known for a while that all our theoretical discussions with palliative care were quickly going to become reality.

For those who have been there, what happens after? What advice can you give for the days/weeks/months to come? She will be cremated, and I'm sure eventually we'll have a small ceremony to scatter her ashes, but I'm not ready for that now. What do you do? Our parents are flying here and may not make it in time to be with her when she passes. I don't know what to do with them once they show up. All I can think about now is planning and logistics for the days to come. (Ideally I'd like to just take off and travel a bit but I'm on travel restrictions due to minor complications with my current pregnancy.) Part of me just wants to go home and clean out her stuff, something to do to keep busy, but I know my husband won't be ready. And I'd rather do that alone, really, not with parents and in laws around.

Just rambling now...not sure how this plays out....thanks.

[Anonymous]

OP, I am so so sorry. I don't have words of advice, just virtual hugs for you.

[Anonymous]

I am so sorry, OP.

[Anonymous]

I am very sorry.

[Anonymous]

I am so sorry. Take as good care of yourself as you can, which means doing exactly what you want to do, what feels 'right' (under the terrible circumstances). For us, that meant a funeral and a burial and someone else going to the house to box up things for going through later (still haven't managed to do that yet). We did take a trip to a beach - it was winter so practically deserted - for a few days.

[Anonymous]

I'm sorry OP. So I wasn't pregnant when we lost our baby but DH and I skipped town pretty quickly after services were done. We had services right away mostly for our family and less for us (we later had a private ceremony with just me and DH where we scattered her ashes and planted a tree in our yard).

Here is the only thing you need to worry about right now (other than being with your family of course). What happens after she passes? Do you have it arranged where she will be cremated? That's really the only thing I can think of right now that you need to have planned.

Then I'd recommend you and DH booking a hotel room as far as your travel restrictions allow you to and grieve. Don't go home right away. I wish I hadn't. I cleaned out everything in between sobs and anger. And then later when I had calmed down, I was sad that I had just taken apart everything without thinking. (thankfully my mom was wise and intervened unbeknownst to me and stored everything at her house because she was rightly worried I'd regret my fit of throwing things out).

I'm really sorry OP. It gets easier but it doesn't really ever get totally better.

[Anonymous]

Now is the time to call in any favors and ask for any help you might need. If a close friend would be better to help you with tasks, ask. If you are part of a faith community,reach out - food deliveries, help with any funeral logistics, whatever.

Don't worry about putting other people out. Other people never know what to do and may not want to "intrude" on you. Be specific about what help you want or need.

I am so sorry, OP.

[Anonymous]

I'm so sorry, OP. Wishing you strength and support right now. I hope you will come back here for support as needed.

I have not lost a child, but I have lost both of my parents and a brother in the past few years, and I can say that you will probably be kept very busy in the days and immediate couple of weeks after her passing. I would suggest considering some kind of funeral ritual for a couple of reasons -- one, because your parents and other loved ones will be here and will want want to be supportive and be part of a ritual to honor her life and death, and two, because it will give you something to do to channel the grief and energy and to occupy the time immediately after her death. I have come to believe that funeral rituals are useful not only in a ceremonial way, but maybe primarily because they keep you functioning at some practical level in the days immediately after the shock of loss.

Maybe think about some way that the people who love you and her can come together to support one another...even something as simple as a luncheon where your friends, family, and her caregivers could gather to support each other and say goodbye to her. I know you say that scattering her ashes is not something you are ready for yet, but there are other rituals you could build around her death that might be supportive and meaningful.

As for her stuff, if you can spare her room for a while (depending on the timing of your pregnancy and what your space needs are) I would highly recommend that you hold off on making any decisions about her things yet. You are kind and understanding to take your DH's feelings into account. And you may feel differently about what you want to save and what is too painful even a month or two months from now. So if you can just close the door, I suggest doing so.

[Anonymous]

Can you have one room devoted to her to keep the door shut? Then you and do can go there when you need to. Otherwise it may help to put all things that are hers there to keep from constant reminders scattered in the house. Is there one particular friend that is a rock? You need someone, not parents or dh to help with meals and logistics and to just sit with you. To cry, to watch a movie, to get you to shower and eat. This is important if you are pregnant. Your child will find peace soon and you can say goodbye, cherish that if you can.

[Anonymous]

I'm so very sorry, OP. Echoing 12:18's post, I would do whatever I could to help a friend--or even an acquaintance--in this situation. Food, coordinating things that need to be coordinated, sitting with you while you cried, any of it. If there's someone who can do the asking on your behalf, that could help, too (thinking of what friends have done in other crises).

Sending you wishes for comfort.

[Anonymous]

OP - So very sad to hear this is happening. This is a time when your close friends would like to help, so let them know what is going on and suggest maybe some meals which could be frozen and just heated up when your parents/in-laws are there. Also perhaps some simple breakfast items. I would ask one friend to be "the go to" person on this and give them a key to your home so that they could just see that food is there as needed.

You and DH need to put your priority as you can on spending time with your daughter and you need to pace yourself given your pregnancy. How much support you or DH may need afterwards may be unknown so you might want to get a phone number of Compassionate Friends in your area. Be good to one another during this trying time, too.

[Anonymous]

Ask the hospital about hospice services - hospice is a huge help not just to the dying person but the grieving family and can probably help you think some of this through.

[Anonymous]

Huge huge hugs op!

[Anonymous]

I'm so incredibly sorry, OP. Just know that you'll have a range of crazy emotions (and possibly times where you don't feel anything) and it's all normal. All of it. Don't do any "shoulds" in your head about how you feel. Ask for help from people if you want it. Take care of yourself and your family and forget everything else.

Sending you love and all the comfort I can from the other side of the screen.

[Anonymous]

I'm so sorry, OP.