We have heard recently that LO is not going to make it.....

(33 Posts)
Chottie Tue 05-Nov-13 05:10:58

and we probably have about 1 year max together.

We are busy trying to think of ways to spend some lovely time together and also ways of remembering LO.

LO is just over 5 months old. So far we are going to see Father Christmas, taking hand and foot prints and taking lots of pics and videos. Can anyone who has done this journey offer some more ideas and suggestions.

We would not be able to take him out of the country.

coldwater1 Sat 16-Nov-13 17:24:27

I had my terminally ill baby for 4 months, one of those were spent in hospital. Unfortunately we couldn't do a lot with him as he disliked being handled and would stop breathing. One thing i regret so much is not getting any professional pictures done of him sad

paranoid2android Fri 15-Nov-13 07:57:50

I'm so sorry to hear about your loved one. Have you tried baby massage, reiki or baby shiatsu? It would be a wonderful way to connect and build extra closeness during this time.

BlackberrySeason Wed 13-Nov-13 19:22:31

I thought your post was lovely too, Lilly. I am really sorry about the loss of your lovely ds2.

JaquelineHyde Tue 12-Nov-13 22:16:31

Lily I think your post was lovely, no need to explain why you spoke of your DS2. It was obvious to anyone reading that you were extending a hand in support and simply saying 'I understand'.

Your description of waking your DS2 up to show him the Christmas lights was beautiful, I bet he loved it, all sparkly and magical.

I hope you have people around you to support you and to chat to you about DS2 and all the happy times you shared together.

Love and strength to you and Chottie xx

LilyTheSavage Tue 12-Nov-13 21:45:57

Hi. It's me again. I've been thinking about you all day and wanted to say something. The first thing I should have said was how very sorry I am when I read your post. My heart bleeds for what you are going to have to go through. How precious your time is going to be.
I told you about my DS2 not to take anything away from you or to distract from your story, but merely so that you know I understand to an extent and that I feel for you very much.
Hope your day was ok and you felt strong and got the support you needed to make it easier to make a good day for your LO. I'll be thinking of you.
Lots of love. XX

LilyTheSavage Tue 12-Nov-13 08:11:01

I've recently lost my DS2 and am trying so hard to think of things he enjoyed. I do know that my DS1 loved being woken up when he was a baby when we'd decorated the Christmas tree one evening and the lights were on. The smell of the tree was wonderful and the lights soooo pretty. I was so excited about how beautiful the tree looked and smelled I had to wake him up to show him.
Your strength is humbling me. Right now I am drowning in my own self-pity and pain but you are making me try to think of happy things. I hope you've got lovely friends to look after YOU. XX

drinkyourmilk Sun 10-Nov-13 22:38:09

For Xmas presents for yourself and close family how about a bauble made at a ceramics cafe? The staff will help you make them perfect.
It's different, but I nanny for very sick children and those with profound SEN. I've seen some lovely reactions to aquariums, swimming, lights, wind bubbles, music.
I wish you a truly magical year with your LO. X

JaquelineHyde Sun 10-Nov-13 22:29:30

So sorry to hear your news Chottie.

Christmas tree lights for the first time are usually magical for small babies and children, catching this on video/photo would be lovely.

Maybe make a decoration out of a print of a hand or foot and each year you can take it out and hang it on the tree and share Christmas together.

BlackberrySeason Tue 05-Nov-13 17:46:19

I am so very very sorry hmm

Something really nice to do is singing with CDs - my DS loves the ride a cock horse nursery rhyme dc you can get from Amazon and the room on the broom cd. Music groups are very nice for this age group.

Something else which is just a thought is if he hasn't been christened or had a naming ceremony yet then perhaps something like that would be a lovely way to get everyone in your family and friends together with him, if it would be something that would feel right.

Mama1980 Tue 05-Nov-13 17:40:29

I'm so sorry. I haven't any experience but couldn't read and not reply. My ds is nearly one and the things he loves doing are outdoorsy type things, the beach, the forest anything tactile and unpressured. Also I agree with masses of photos and videos. Depending where you are in the country I also had my sons handprint 'cast' in glass, it looks beautiful.
Keep posting if it helps, the support on this site Is amazing. X

Chottie,
I'm so so sorry to hear what you have to say, and say so bravely. I have not walked in your shoes, but yes, yes, to videos and photos. My DC are older now, but I came across baby videos I'd completely forgotten about, this summer, and they transported me back to the joy that was their babyhood.
Water, leaves, sea, days outside and with animals are what our 3 loved.
Much love and hand-holding to you. Keep posting, my lovely.
XXX

Patilla Tue 05-Nov-13 12:46:14

Oh and take photos not just of their face. Hands and feet at the obvious things but I am currently in love with the nape of DD's neck and she is just two months older. I also love her profile I see when breast feeding her.

And as your DC starts to make noises try recording them. Perhaps a recording of you singing and their "singing" back?

Patilla Tue 05-Nov-13 12:43:20

Past one years old a tourist type train can be very exciting.

But sometimes experiences rather than trips can be just a special - waking them up if it starts to snow, a walk in the dark with torches, hugging on the sofa with favourite books, rainy day picnics in the lounge.

I haven't been through your journey but te things I remember from DS' infant hood were the routines, familiar patterns - a drink and shared cake at a local
Cafe then jumping in puddles in the car park, our weekly trip to the pool, favourite books I had forgotten about but rediscovered with DD.

I think at this age the most important things is that they feel
Secure and loved and we found this most often happened when we actually tried to do slightly less. Big days more often resulted in meltdowns!

Thinking of you though. You are doing amazingly to be making these plans to enjoy your family time together.

MarianForrester Tue 05-Nov-13 12:40:03

So sorry about your boy.

Haven't been there, but at that age my boy loved a little singing group thing we went to every week. Tbh, I thought the idea was silly when we first wentblush but he just really seemed to love the music and the familiarity of the songs. There was one in particular which always cheered him up too, which was handy...

magimedi Tue 05-Nov-13 12:20:18

So sorry - I have no advice that the others above have given (especially aquarium) but didn't want to read & run.

flowers

specialsubject Tue 05-Nov-13 11:15:28

I cannot imagine how you feel and send you deepest sympathy and love.

regarding pictures - I suggest making a separate copy on a different hard drive (they aren't expensive now), and also on DVDs. Then keep them at someone else's house, well wrapped and possibly in an attic so secure. Online backup always risks the company going bust, doing it yourself means you always have control.

Sidge Tue 05-Nov-13 10:50:41

I'm so sorry to hear your sad news.

Is your baby able to travel much or interact with others? I'm not sure if his health or physical capabilities would prevent it but toddlers tend to love animals so we would visit the zoo, aquarium, petting parks etc.

I live near the sea (100 yards!) so if you want a trip to the seaside let me know and I'll help you organise it!

Maybe arrange a professional family photo session as well as home video and pictures?

I hope you have support from those who love you and professionals that can support and guide you through these painful but precious times. flowers

hillyhilly Tue 05-Nov-13 10:49:52

I am so sorry to hear this.
Maybe choose some books too, you can start reading to him now and he will get familiar with the words and rhythm (The Gruffalo and others by Julia Donaldson are great for rhythm I find) and as he grows up they will have a familiarity that if he ends up poorly and bed bound could be comforting to you both as something to do. Similarly maybe hand puppets or cuddlies.
Don't forget to take care of yourself/ves too.

I`m so sorry, I havent walked this path, but I would try to build as many memories thoughout the next few seasons if I could capturing as many on film or in photos.

Much much love to you and your family x

LoveAndDeath Tue 05-Nov-13 10:48:22

Chottie, I am so sorry. My baby died aged 7 weeks but in our case it was totally unexpected.
Take loads and loads of photos and video footage and back them up remotely, maybe on FB or flicker. We use a service called mozy which backs up everything on the PC in case it crashes. We have only one video of dd. She didn't really do very much as a baby so there wasn't much to video but I really wish we'd taken more all the same.

Theoldhag Tue 05-Nov-13 10:44:42

No words can express the sadness that you are facing. I could not read and run, these words came to mind reading your op.....

Love like starlight never dies

Sending you hugs, may you seize the day and spend your lo's time here filled with love, enjoying the time you do have together immersing into the sensory world that is around us.

WhatABeautifulPussy Tue 05-Nov-13 10:34:06

I'm so very sorry sad

I can't imagine what I would want to do except cuddle my DC all the time. I just wanted to say I'm thinking of you.

If you can't go far outdoors maybe bring the outdoors to him. A shallow box from Ikea can be filled with leaves and conkers or cut grass and flowers. It's also great for playing with water, gloop, paint, anything really.

moldingsunbeams Tue 05-Nov-13 10:18:00

very sorry xx Have a friend currently going through the same thing with a slightly older child. Its bloody awful.
Aquariums, swimming if he is not tubed are favourites, messy paints and play, the sea,

do not feel the need to rush everywhere, my friend was trying to do this because she felt she had to create memories but the little girl wants family time and play at home more than anything else.

bebopanddoowop Tue 05-Nov-13 09:07:42

I'm so sorry OP. Much respect for you having this attitude of making the most of your time and making memories.

I echo what others said and what you have already thought of. I'd say re: photos also make sure you get photos with you / family in the shot too. And print out and back up the photos as you go.

I'm so sorry OP.

I took DS on a steam railway up near Alton where they made all the trains look like Thomas the tank engine and friends. He was about 13 months and loved it.

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