I’m back on the inside..

Difficult 48 hours but both Rose and I seem to have survived our enforced separation. I felt a bit unhinged during my time away but that’s been brought into perspective by a young couple in the parents room grief stricken because they have to let their baby go today. When we were going through the teratoma removal and the seizures I wished fervently for that type of release for Rose and selfishly for myself but now I can’t imagine feeling that way. This place is not for the faint of heart. Sitting amongst all this horrific grief, not being part of it… having escaped it so far… I can’t put in to words how that feels. I know it’s not true but it FEELS easier to go through something a bit like it (as we did during the seizures) than to sit by helpless while someone else does.

The Grandmother just came in and picked up Time for Bed, as it’s their family’s special children’s book, to read to their baby before they turn off his life support. I think the benefit of our little library reached new heights today. Thank you thank you and all my love and acknowledgment of how we must’ve made your hearts ache in the early days and weeks.


Thanks, Chantelle for Time for Bed!




About RoseEir

Premmie born @ 30 weeks with Cervical Teratoma
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11 Responses to I’m back on the inside..

  1. Caroline Parsons says:

    Oh god Jane. I am crying. You are so strong.

  2. Ness says:

    Oh Jane, that is sooooo heartbreaking. You are such an amazing and strong woman, not only to be going through your own pain and worries, but to also be watching others go through the same and worse. My heart goes out to you. xx

  3. San says:

    Jane, what a touching insight into the world of NICU and the reality of other peoples parenting journey. How incredibly sad for all involved, including you who was able to be of some comfort to them (via the library). What a wonder you are my love. You just knew how useful it would be and then went ahead and organised it beautifully. The world needs more people like you.
    I’m sorry I didn’t realise that 48 hours was warranted this time, I’m sorry that I didn’t pop up to give you a kiss and steal another cuddle from the precious Rose.
    Loads of love, xx

  4. Kate says:

    That sounds so hard to have to do. I must admit I was sitting at work with tears in my eyes as well. Rose looks like she is tube free. Is this a new development?

  5. Liz says:

    Oh my lord….I have just read your post and am now a crying mess. You are an amazing woman to survive the NICU, tell these stories and give us all a big whack of perspective. I am so, so, so pleased your library is playing such an important role. All my love and strength to you. xx

  6. Vanessa Kingston says:

    Btw, just saw the photo of you both…gorgeous smiles !!!! 🙂

  7. Louise says:

    How utterly heart breaking, I feel devastated just reading about it, so have no idea how you manage to be so amazing when you’re in the heart of it. Maybe it’s Rose’s big smile, telling you she’s missed you and very happy to see her fabulous Mum. Lx

  8. Kylie says:

    Biggest smile ever on Rose, you and me looking at those gorgeous photos! She really was made with the same mould as James!!

    Jane, you really do deserve the world’s biggest pat on the back. Your library idea is pure genius! You will never know the amazing benefits the library has offered. If it could talk, no doubt it would be filled with the most amazing stories…some inspirational and some not so fortunate…but the main thing is that the library is now there and it didn’t exist before our beautiful friend moved into NICU and started caring for everyone! Xxxx

  9. ursula garratt says:

    You magnificent woman you! Your soul shines. Ursula xx

  10. Chantelle says:

    I’ve been so incredibly moved by this and so terribly sad to know what happened to this family and their baby. It’s heartbreaking to me. But I also know that they’ll look back on their time and remember this book as being a special memory they shared with their bub. Jane – you’re such an incredibly strong Mother and you should be so proud to have thought of putting the library together for all the families to share and create memories with their little ones. Much Love. Xx

  11. Jane W says:

    Jane, wow, you really are amazing. It took me a day and lots of tears to recover from just reading this…. How on earth are you surviving it? Not alot of choice I suppose! What an amazing thing you have done in setting up the library for this family and who knows how many others… your story really brought home how a simple but brilliant idea can have such a profound effect on people’s lives. The world needs more people as beautiful and caring as you x

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