'What the caterpillar perceives is the end, to the butterfly is just the beginning.' Our journey after Beatrice

[cupofteaplease]

Beatrice died on 24th October aged 1 year, 1 month, 1 week and 1 day. She was buried on 2nd November. As she starts her new life as a butterfly, we are left on the ground feeling bewildered and bereft. I read a short piece at her funeral, and I stand by it:

'I often felt that being Beatrice's mum was much like holding a butterfly. I was in awe of her beauty and felt so privileged that she had chosen to come to me. But, much like a butterfly, I knew that one day she would spread her wings and fly away.

When Beatrice was one day old, a kind stranger shared this poem with me, and it sums up how I feel about Beatrice:

"A butterfly lights besides us like a sunbeam. And for a brief moment its glory and beauty belongs to the world.
But then it flies once again, and though we wish it could have stayed, we feel so lucky to have seen it."

I feel so lucky to have been chosen as Beatrice's mum and I truly believe that the immense grief we must now suffer is still a small price to play for the love she brought into our lives.

Goodnight Beatrice'

I still feel her love in my heart, but I am struggling without her in my arms. I miss caring for her and kissing her. Looking at her and stroking her hair. Singing to her, always singing so many songs. I haven't sung a song since she died, but I don't want the music to leave my life as it means I have let the grief win.

Fly high little butterfly, but please don't forget all of us left behind who hold you, still so fragile, in our hearts and memories. Please don't forget me, Beatrice x

There are people who have died close to my heart who I rarely talk about. But I think about them every day. I am sure it's the same with Beatrice. Even when people don't feel brave enough to say the words, they will be thinking about her. I also believe Beatrice's spirit, the part that makes her her is cosy and safe in yours and her daddy's hearts

Much love Cup. I think of you, and Bea, and the Teaset, often. She is not cold in her grave, she is warm in your heart.

Have faith.

Cup,

Bea is forever. Her grave is just one way of remembering her, not the only one. The memory of her hating the cold is another, just as good.

The desire to hold on to the grief because it is a way of remembering is not uncommon, a colleague told me in RL about it about his baby and in one of the Anne of Green Gables books there is a most moving discussion of grief, of losing a lovely baby daughter. The author had lost a son. That might sound trite and silly, to quote a girl's book, but it might bring you some comfort too. You will never lose the essence of her. My DM has not lost the essence of my baby sister.

We are still here for you. My primroses are blooming bravely through the snow, though they don't like it either, like their namesake. Everytime I look at them I think of you, her, the teaset.

Dear cup. Three months is no time at all and yet sometimes it must feel like forever. You are in my thoughts.

Praying for you every day, Cup. Wondering how you are coping. If the weather wasn't so awful I would say come and have a coffee, but you probabbly don't want to drive at the moment.

Thank you Dutch. And thank you everyone else for your kind thoughts.

It would have been my Dad's 60th birthday today. I hope they have both had a fun time up there together. If I don't try and smile, I might never stop crying- for him, for her, for my darling girls, for dh, for myself...

It was my birthday on Monday, a horrible cold day, just another without my baby. But tomorrow night, I'm going out with friends to celebrate. I'm looking forward to laughing and dancing again, even for a short while.

Oh I'm so sorry cup, I'm more of a lurker than a poster but please don't think you are less than your dh or that he is "better" than you, everyone handles grief differently and there is no greater grief than yours. Beatrice is beautiful and she is only ever a heartbeat away from her mummy. X

That's excellent news Cup going out with friends. Have a wonderful time.
The sun is shining here, what a difference that makes.

Dancing - that sounds like a great idea. Hope you have a lovely time and manage to enjoy yourself for a few hours.

Cup,

I try always to light a candle in my mins around 7 for you, I hope on Monday that it will be for you with friends.

Birthdays are funny things. Friends are great.

I hope you're laughing and dancing tonight cup, and enjoying some time with your friends. You're always in my thoughts, especially Beatrice xxx

Not a day goes by that I do not think about Bea the Beautiful. She is not cold , you know , but warm and safe in the arms of Our Lord and with your darling Dad.

I,too , hope you found some joy from being with your friends.

Just wanted to let you know that I think of you and your little Bea often. Such a beautiful baby, never forgotten. Lots of love x

Remembering Beatrice too and thinking of you Cup and all the Teaset as you journey on with her forever in your hearts. Your posts speak so eloquently of your physical loss, but I love reading about the regular 'ordinary' times you had with Beatrice - reading stories and snuggling her up with her sisters,then you tenderly tucking her up in bed. Whilst Beatrice was here we often (naturally) heard more about your struggles and it is lovely to read about all the 'everyday' joy that you had. Not that anyone could call your life 'ordinary' or 'everyday.' Beatrice saw to that! And she transformed your lives - and those of many others - and she will continue to do so.

Thank you for continuing to share Beatrice with us Cup. x

Cup thinking of you.

Thinking of you and all your girls.

And again, as it approaches that difficult loving routine time.

Thank you very much for staying with me. I could talk forever of the normal things we did We used to go to Costa together. I'd order a cup of tea and toast and I'd give her a cuddle as my tea cooled down. She'd usually fall asleep in my arms so I'd lay her down in her buggy and enjoy my breakfast. Then, at some point, she would wake up and be all eyes, looking for me. Then I'd hold her again and play with her little sensory dolly, helping her to hold the bumpy plastic in her hand.

We used to go to the library together and I'd read her stories. Whenever we went out in the car, I'd play the music nice and loud for her to hear. When I turned off the engine, she would always take one very loud breath, almost like a sigh, to let me know she was still there. She liked going to church because of the singing. I have a bag of blankets that I keep in the boot of my car. In the warmer months, I would lay them out on the grass and put an umbrella up. I would fashion a way to keep her upright and we'd lay together in the warmth. I would give her grass to hold in her hand and tell her about the children playing nearby, or the ducks on the brook.

She loved the cinema, and music therapy. She liked the sensory toys at the Children's Centre. She enjoyed cuddles with her sisters as they watched iCarly on the TV. She didn't like the cold, and hated the feel of snow. Dh always gave her baths, and she loved being in the warm water. She hated the beach, and got very cross when we took her to the evening entertainment at Haven!

I miss normal with her. I have so much normal now, but I'd give it all back to have another day with her, even if that day was spent cooped up in a hospital ward.

I never wrote down what happened at the post mortem meeting at the hospital. The geneticist was there, and she was very helpful. She explained that they have some of Beatrice's DNA left and they are going to use it in a trial, to see if they can work out whether her condition was caused by recessive genes from dh and I, or whether her condition was de novo. Dr Doom apologised that she was given more morphine than I had agreed to. I saw it written in red in her notes and on her drug chart that I'd only consented to 0.3ml, but she was given 1.6ml when I was asleep. I assume this was down to staffing shortages. However, she explained that 1.6ml was still within the safe limits for her weight, and she would have died because her brain stem was underdeveloped, meaning she was just working too hard to keep everything functioning. Eventually, it all got too much for her. Her heart ventricles were thickening and her blood pressure was twice as high as a normal child. She was just worn out and her body was tired of working so hard to stay with us. I'm 'glad' it was a combination of things that ended her life, I couldn't bear to think of her death being caused by human error.

I have contacted the hospice to ask for help for dd1 and myself. Dd1 has been having problems with a certain child at school, and her head teacher thinks she could benefit from counselling as she is 'over sensitive'. I need help because I am at rock bottom. I feel like I want to go to sleep and never wake up. I have so much turmoil in my head, I don't know what to do with myself.

Dh talks about having another baby, which I would love, but I also have the option of going full time at work later in the year, which I would also love. I feel like I am standing on a precipice and I don't know which way to fall. I don't feel in any frame of mind to make any big decisions without talking through my feelings with someone neutral.

Still here, still looking and praying for you.

Talk as much as you like. I enjoyed reading all about your days with Bea. One day at a time.

Lovely to hear of all those precious times you shared with Beatrice, cup .
It sounds as though you developed such a lovely, intimate rapport with her, I'm sure Beatrice knew how much you loved her.

Cup, lovely to hear from you. Talk and talk and talk.

Your tales of Beatrice are so moving, write them down from here in due course, they will be a memento for you but also if you can ever bear to share something so precious and personal, something important for people working in this area.

I'm glad it wasn't human error, both for the nurse concerned and especially for you and your sense of why wasn't I awake.

I think you are brilliant, brave and right to find counselling for your Dd and you, perhaps the other Dd and your DH idc. There comes a time when the burden is overwhelming. If you don't strike lucky with the counsellor first go, find another. As a Dr said to Ds last week, you have to find the one that fits you.

I always think of you at 7 even if I don't always text. I haven't found your description of going to Lourdes on the other thread but will do at some point, v interested as one of the turning points in my life was serving in the baths there.

Remember, you surrounded Beatrice with love, and she gave it back to you. Nothing else matters in her life, ultimately. That love will never die, unlike our fragile bodies.

She sounds like such a wonderful girl who brought so much joy and happiness to your lives. The loss must be overwhelming. I know I would need another baby in my arms to hold, not that it could ever ever replace Beatrice. Only you will know what is the right way to fall, much love xx

Thank you so much for sharing your precious memories of Bea, what a wonderful life you and the whole teaset gave her. You all shared precious, individual memories with her, which will stay with you all, always x

thewhistler Our time in Lourdes was breathtaking. It really was the best week of my life, not just with Beatrice, but as an individual. I have never felt as whole as I did that week. I recall events from our time there with such peace, I really can't explain it. As you know, it's such a small place, and the outskirts of the Grotto are just tacky and touristy! But just knowing that everyone is there for incredibly similar reasons, well that is something magical that words can't describe adequately. It is like being in a beautiful bubble with colours sorrounding you that you've never seen before- breathtaking. I know I came back on my thread here when we returned home and tried to describe how our time in Lourdes had been the balm to sooth a wound that I didn't even realise I'd had. I knew life was difficult, and I needed a 'cure', but I didn't know where to look for it. Lourdes just came along and eased things without me realising.

My girls are desperate to go back in August- they talk about it most days. I will begin to put the wheels in motion to ensure that this happens somehow. I want to go back and re-visit the happy places I shared with Beatrice, and light a candle for her. I lit one last year, stood in front of it and promised that I would bring Beatrice back to Lourdes. I can't do that physically, but I can take her back in my heart, just as I take her everywhere with me. At the time of lighting the candle, I was stood with another mum whose daughter has MLD (a life-limiting disease), and we both promised to make the return trip this year. I went to visit her and her beautiful dd in their home on Saturday- she is still with us and living her short life as best she can. I hope I can at least hold her hand in Lourdes this August, even if I can't hold Beatrice's.