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

[Chottie]

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.

[drinkyourmilk]

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

[LilyTheSavage]

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

[LilyTheSavage]

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

[JaquelineHyde]

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

[paranoid2android]

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.

[coldwater1]

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 :(