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.
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
Saddayinspring I'm so sorry to hear of your mum's death, my thoughts are with you and your family. I, too, lost my Dad to a heart attack, five years ago now. The pain has definitely eased, it's not do rough around the edges. At the moment though, I just resent the passing of time; speeding forward, dragging me further and further away from the last time I held her. I wish time would stop, or preferably, rewind. Then I could kiss her again and sing to her, breathe her in and make one more memory. Just one more chance to stare into those beautiful dark eyes that seemed so wise and content, despite everything. Perhaps she understood her time was short, perhaps she was hungry to take everything in too, because she knew she couldn't stay long. I'm proud that I showed her so much, I'm at peace that she saw more than some people see in a lifetime.
Today is painful, the hot stone in my throat is threatening to spill tears. I met up with one of my friends I met in SCBU with Beatrice and her son. She told me that the other mum we met there, a single mum with then premature twins, has just been diagnosed with terminal cancer. They've said it's slow growing, she could have a few years. Immediately I broke down in desperate tears- why? Why her, who has twins who NEED her? She's their only parent. It's just not fair. Perhaps it would have been better for it to be me, I'm wasting life away wanting to be with Beatrice, then she could stay with her babies. Why does life work like this? My friend and I sat and cried together at the injustice of it all- the three of us met in already sad circumstances, wasn't that enough pain? Why did Beatrice have to die and the mum get a brain tumour? When is enough enough?
My friend gave me flowers, and it was so special to receive them even though nobody died. They are so pretty. We remembered Beatrice together and we cried. She told me of a couple she knows of through her parents who have given birth to a baby with an undiagnosed life-limiting condition. She told me that because of Beatrice, she passed on the message that a life filled with love is a life worth living. That's Bea's legacy, and I feel so proud. Because of her, my friend could share the knowledge that even the shortest life matters.
It makes me think about how I could help other people in the future, those who find themselves parent to a life-limited child. In those early days I turned to Mumsnet for support, but I would have loved someone to come and make me a cup of tea, pass me a tissue and let me know that they too had experienced their world being ripped asunder. But I would have appreciated someone guiding me in practical ways to help my dying child to live, too. Perhaps even take my other children to do something fun for a few hours. I'm pondering if this idea in my mind could materialise into something practical. I don't want my experience with Beatrice to be wasted, if I could even help one other mother through those dark early days.
Tomorrow I see my counsellor again. I don't know what to say, other than I'm not sleeping again. I'm having scary hallucinations and wake up terrified; my anxiety is gripping me again. I need a firm hug and soft pillow, I'm bone-tired again.
'A life filled with love is a life worth living'. It's hard to sum up a persons life in a few words, but I think those words come as close as is possible. It's inspiring that Bea's legacy can help other families. And indeed it's an amazing lesson for any of us.
I'm so sorry you are having such a hard time. And so sad to hear about your friend. She and her babies will be in my thoughts.
I often think of Bea. I followed your threads from her birth (I have name changed - I was Moajab) and I can conintue to promise you that Bea has not been forgotten. She touched so many lives and still does. I can't begin to imagine how hard it is for you to live on without her, but 'a life filled with love is a life worth living'. Her love and that of your other DDs will always fill your life. Sending my thoughts and love to you and your family. xxx
I went to a lovely church today and had a moment of still thought. I lit a candle to add to the others flickering . There was an amazing modern stained glass window throwing a coat of many colours onto the flagstones. I said a few words to Beatrice x
Thank you, you three Things continue to be hard. I remind myself that this pain is the price I must pay for loving Beatrice. And I wouldn't change that. I just wish she could have stayed for longer. One more kiss, one more song, one more memory.
Dd1 had an operation today, we are hopefully being discharged soon. I was dreading coming back to the place where we spent so much time with Beatrice and the place where we made our very last memory together. I can't deny, the morning was dreadful as I heard other mothers complaining about having to stay one night etc and when dd1 was put under GA I became very panicked. I thought about the jejunostomy Beatrice never became strong enough to have, but with hindsight I'm glad. I never could have watched her being put to sleep knowing she'd likely not wake up again. That said, the afternoon has brought surprising comfort. A couple of people from the ward have popped in to say hi. And the reason it is comforting? They remember her. That's all I need today, to know that she is remembered. One of the play workers said she can't see a bandana bib without thinking of Bea- she had so many! I normally hate seeing other babies wear them, but perhaps I need to reframe that upset- to someone else they bring a memory of Beatrice, and that can't be bad.
Cupoftea I followed all of Beatrice's threads and your posts are so full of love that I too feel like I knew Beatrice.
I wanted to say that DH and I went for a walk yesterday and we came across a bank of beautiful primroses and I immediately thought of Beatrice Primrose. I imagined her enjoying the lights of the cinema and taking in the mountain air on her picnic near Lourdes.
I didn't ever meet Beatrice but I am quite certain I will never forget her either.
Thinking of you and your family and wishing you strength and peace.
We finally ordered Beatrice's headstone today. I feel that a huge weight has been lifted off my shoulders, it's good to know her resting place will be properly marked. I'm much calmer these days. I think I am resigned, knowing I'll never see her again. It's a strange acceptance, but one I needed to come to, evidentially. I'm not sure how grieving should be done, people haven't held back in commenting on how I am doing it. I don't much care about the opinion of others anymore. This is my grief, my dh's and my dds'. And do you know what? I'm bloody proud of all four of us. Proud that we all put 100% into each day, even though it hurts. It's a terribly lonely time though, and that's something I can't easily explain. People say I'm always busy, how can I be lonely? But I'll always be that bit lost and lonely, because she's gone. And I love her so much, but have nothing to show for my love. It's like walking without a shadow. That makes me feel lonely.
You are right to be proud, you sound like an amazing family, who gave Beatrice an amazing year. I am glad to hear you have reached some acceptance, but equally not, because this is not something you should ever have to accept!
So glad that you been able to order Bea's headstone. I have been thinking of you such a lot since Monday when I drove home along a country lane and saw the banks studded with gentle primroses in the sunshine. Look after yourself .
Cup I've been away from MN for months, and name changed in the interim, but you, Bea and the rest of the tea set have been in my thoughts and prayers. Reading back through this thread and catching up I feel you've come so far, and carried the memories of your darling with you all the way. I'm so pleased you've ordered the headstone and that maybe that's another step to acceptance. Using your experience of Bea's life to help others in similar circumstances is a wonderful idea and a real tribute to her. You made it so worth living and that will give hope as much as you can give support in only the way someone who has been there can.
Thank you so much for telling me that you remember Beatrice, and think of our family. It's so kind of you all.
I started some volunteer work today at the special school where Beatrice used to attend Conductive Education. It was a bit hard, seeing children with the same oxygen tank bag, and the same feeding pump. Of course I thought about Beatrice and allowed myself time to wonder what she'd look like now. How long would her curls be? Would she have gained more weight? Grown taller? Would she still enjoy music therapy and making choices with her eyes? Would she still twist her wrists from side to side when she became excited? Would she still save her best secret smiles for me?
But on the whole, it was a good day. I loved helping and playing with the children and I reminded myself that if it hadn't have been for Beatrice, I never would have known about the school, and that would be my loss. She's still with me, in so many, many ways that others will never see or know. She's still my inspiration and my encouragement, even though she's gone.