'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

Cup I don't know what to say except that through MN being virtually on your journey has been such a privilege. I cannot know or imagine your pain at such a huge loss but know that you and Bea have brought insights and hope to many, many people that you will never meet.

It is a privilege to have been able to share in your journey Cup and to have known Beatrice the Brave through the love you have written for her.

Take heart and good luck as you continue along the road.

Wide awake pondering my own troubles cup & I thought of you, Bea & your teaser & had to pop in & see how you are. I'm sorry you can't have the headstone you want but know that whatever you do finally get will be beautiful. As others have said you have an amazing way with words & writing everything down sounds like a fantastic idea. Your little Bea is carried in so many hearts & has touched us all at mn. Sending you love & hugs x

can't type through tears

I always think of you and Beatrice .( and all the teaset) . You must write it all down, as others have said your writing is so heartfelt and touching.

Things have been quite busy since I last posted on Wednesday. On Thursday, I went to work as usual, but my mind was really confused. I was struggling terribly to concentrate on people talking to me, and I was, quite frankly terrified. I could see people talking, hear their words, but they made no sense at all. Once in the office I tried to concentrate on a task which I found I couldn't, and I could hear two of my senior colleagues having a conversation next to me, but it made no sense at all. One of them mentioned that I didn't look myself, and with that I collapsed into tears. They were lovely and asked what was wrong, had something happened, had someone upset me, but I could hardly talk to answer them. They gave me all the time I needed, but I sobbed on them for half an hour, trying to explain my feelings but I couldn't articulate what I was feeling properly. I text dh and asked him if he could make me a doctor's appointment, as I felt so frightened to be me.

I know one of the things that had upset me, but irrationally so, is that a close colleague went on Thursday to look around a special school with a view to applying for a job vacancy there. The thing is, this is the special school Beatrice was going to attend, had she lived. I wrote on here about how I took her around the school with the head teacher and fell in love with the place. The head had encouraged me to apply for a place in the pre-nursery unit as they can accept children from 18 months, with their settling in sessions starting as early as 15 months. So, it just felt too close to home. I was terrified of people asking my friend about the school in my earshot, as I knew I wouldn't cope well. It's YET ANOTHER reminder that Beatrice doesn't have a future.

On Friday, I had a better day and went to see the doctor after work. I'd never seen him before and he listened, but his solution to my panic attacks was to sign me off work again, which I refused. So, I've got to go back on Friday to see how this week has been.

Saturday, we had our first bereaved parents group at the hospice. It was hard to be back there, but comforting all the same. Just being there reminds me of the comfort we felt there with Beatrice. I cried a lot remembering her life, but I also felt immense proud when sharing her courage with the group. I can't really talk about the group in respect for the other parents there, but suffice to say it was 'good' to meet other parents who are bereaved after caring for their disabled child. It's a loss like no other, I'm sure as even knowing your child is life-limited, their eventual death is still a shock and a terrible trauma. Sometimes I get the impression people think it must be easier to lose Beatrice as I knew she was going to die. People also say, 'You had so much more time with her than you should have though, she wasn't meant to live a day.' But I know that if Beatrice had outlived me, I still wouldn't have spent enough hours with my darling girl. Of course I am grateful for the 13 months, but am I bitter that we didn't get more? Damn straight I am.

On leaving the hospice, I received a call from my best friend's husband. She had been taken into hospital last week at 35 weeks pregnant with pre-eclampsia and I hadn't felt able to visit her in the same wards where I gave birth to Beatrice, around the corner from the room where she took her last breath. Anyway, he told me that she'd been rushed in for a crash section on Saturday morning and gave birth to their son. I was so worried for my friend, the shock of the birth coming early, I don't know, but I lost it again. I just felt completely bereft as if her dh's words had torn me open. He contacted me again later at night to say the baby was cold and in an incubator and my friend was in a bad way with low platelets, the doctors were worried for her. So I couldn't sleep last night, I just felt sick with worry for her. Eventually I heard from her by text this afternoon and her and her son are now fine and dandy. I'm happy that she is recovering but I am... numb? It's been another week of 'too much'. It might not seem like much to others, or perhaps it does, I'm not sure. I've lost all sense of perspective on life. But I feel completely and utterly drained by it all.

The hospice talked to us all before we left about self care; having laid open our souls and battered ourselves with a torrent of emotions, they warned us that we would be feeling vulnerable on going back into the real world, and we should be kind on ourselves for the afternoon at least. I'm not sure the shock of hearing about a traumatic birth involving my friend who I consider a sister was not the gentle 'self care' the counsellor had in mind... I'm so sick of the way the grief makes me this self-centered. I wish I could look outside of myself more but everything I experience feels like a personal insult.

Cup,

Was thinking of you anyway at this time, but want to applaud you for laying yourself so open. You have some much courage.

People just don't know what to say, do they? Whether it is a child or adult, death is always a shock. And of course you want to keep your child.

Grief makes us all raw. Anything can lay us open, we have lost layers of skin. Your poor friend, I completely understand. And the special.school as well. Lots of things that could seem little to others, though especially in the case of your friend I don't think they would, trigger strong reactions.

And of course, because Beatrice was so dependent on you, you feel the loss even more acutely. All children give purpose to their parents, but dependency increases it.

If you can accept that not only is it normal but it is necessary, this is part of you and Beatrice, then it might feel easier. But don't feel you ought to avoid ADs if your Dr offers them, they can help to take a little of the edge off which can help daily life.

So glad you met others at the hospice. You will be able to support each other in RL and know that what might seem odd outside the group is normal for it.

Have you thought about working part time for a bit? Your body and mind have been stretched to the utmost. They need to recover, together. Or could you go to a spa with a close friend for a weekend, where you could cry and be pampered?

Thinking of you,

Bob and I continue to pray for you often. May God's peace surround you and lift you up.

Hey cup, I think of you, Bea and the rest of the teaset often. I check in here to see if you've posted. I remember my excitement when you got your passports sorted for Lourdes. I'm glad you are going back there this summer. I've never been but the community feeling of care and love sounds so warm.

All I can do is pray that as you and your family walk through the valley of the shadow of death you will fear no evil; as you grieve and mourn it can be without being afraid.

You will be with your beloved Beatrice again. Lourdes was just a tiny foretaste of being happy with your girls.

Just wanted to say I am thinking of you Cup and wish you strength to cope.

I woke up this am deciding to let you know that, for different reasons (eg caring for my mother with Alzheimer's) , I too had the experience of people talking to me and feeling as if I wasn't there etc. what helped? It turned out that this experience was in part due to a depleted level of serotonin so AD did work to replace the low serotonin alongside psychotherapy AND advice to keep away from others who are low and yo try to find things to do which are fun. All of this really helped me. This may be relevant to you maybe not but I just had to write this seeing you described exactly how I felt my world was around me.

Ps when stressed, serotonin levels drop low.

Sending hugs xx

I had my first counselling session yesterday with a lady from the hospice. I found it a really useful exercise as I was able to tell her anything and she didn't judge me, in fact she said I am quite normal .
I asked for some tips to deal with some personal situations that I'm struggling with, and she helped me to identify that they are triggers for me and it's perfectly okay to not be okay with them. She advised me to remain open and honest with people and let them know when I am finding thongs too hard. I told her that I find it hard to do that, I worry about saying the wrong thing and offending people, so I just pretend I'm okay and go along with things. But she said it's better to be honest and kind with myself and if it upsets people, well so be it.

Oh cup that sounds like such good advice. I hope it helped you to spend some time with someone who understands what you are going through. Your feelings are so much more important than sparing others.x

So pleased to hear you had this support Cup.
I am finding the help I get from our local hospice so incredibly useful: the non-judging, the knowing-where-you're-at, it is all so helpful.
Thank God for hospice care.

So pleased you had a good session.

Of course you are normal!

As exit says. We have all known you are normal!

But great to have it confirmed in RL and to be able to talk to an expert.

And people who can't cope, that's their problem, not yours.

Haven't been on your thread for a while Cup - but I'm so pleased you have had a good counselling session. I hope that you can continue to see this lady for as long as you need to - sounds like she could be very helpful to you.
Work will get easier, eventually. You're still on emotional overload, entirely understandably - so you have several layers of normal protection missing at the moment and as a result you're shutting down rather than being able to process what's going on in everyday life (kind of like going into shock on a regular basis).

You'll get there. xx

Today was a low day. Nothing much to report, but I just felt incredibly... 'bleurgh'. It has been said to me that after your child dies, you live your life in a state of numbness. I can never again be 100% happy, how can I be without my darling ray of sunshine? But on the flip side, I will (please, God) never experience any crushing lows- how could anything be as painful as when my baby took her last, shaky breath? So numbness is the way forward- no highs, no lows. Slight peaks and troughs, but nothing to make me feel alive. Today was one of those days when I experienced the numbness full on.

I had a check up with the GP and he asked how I was feeling. I explained that not much has changed in my mood since the last time I saw him, although my anxiety is heightened. He replied that he disagreed with me. Ha! I almost laughed. Almost. I think I've heard it all now- ask me how I'm feeling, then tell me I'm wrong and that I don't know my own mind. Okay. He wanted to prescribe me with beta blockers, but as the side effects are nightmares, slowing down etc I politely declined. He said I can't be feeling the same, as I have had a counselling session since the last time I saw him. He also said I was lucky when I mentioned the counselling can last for a year- he said that this length would never be on offer with the NHS. Yes I am very lucky, that the Hospice is providing me with this fantastic resource. Of course I wish I didn't have to access it though. I don't feel lucky that my Bea is dead. Never mind, another bad experience, but not one that I shall dwell on, it hardly rates highly on my list!

One experience that did shake me though happened last week. I approached a company that specialises in children's headstones, and my dds chose a beautiful tribute for their baby sister. It was a teddy bear leaning over the top of a star. The wording we wanted was to be written in pink. The company came back to us and said that our application would not be approved as it did not meet the requirements of the Diocese where we live. We were incredibly disappointed, but took some time to choose something else- something much less interesting and appropriate for the baby's grave that it will be marking. We thought we had followed the guidelines closely and expected it to be approved, even though it was not what we wanted, not even close.

Last week, I received an email from the company. They said even the second application would not be approved, due to the dark granite we had chosen. They 'helpfully' attached a quote for a stone that they felt would be accepted by our Diocese. On opening it, the first words I read were, 'Born Sleeping'. I felt bile rise in my throat as I realised this headstone was not for my baby girl. She lived a life, short as it was and how lucky we all were to have experienced that. On closer inspection, I read the details of a darling little girl who was born sleeping. They had given me all of her parents' details and the inscription they had chosen for their precious girl, who did not get the chance to live 13 treasured months. I felt overwhelming sadness for this baby, and her parents and then the anger came swiftly after the pain.

How dare they make such a stupid error? I know to err is human, and these things happen, but in that moment, I felt pure rage! It totally summed up the whole process of trying to organise Beatrice's headstone. We can't have the stone we want, the colour, the wording, the colour of the wording... So basically, she will have a lump of stone and the words might as well be those written for another child- who cares what they say? They won't be perfect for my girl. She lived her life in her own inimitable style, her funeral was personalised to her and now...? Tough. She can have a stone that the Diocese choose, with the name and dates of another baby on it. Rage. Pure rage and then a choking in my throat of hot tears that threatened to spill if I let them. Time to take a deep breath and focus on what to do next...

I emailed the company and very politely pointed out their error and informed them that I had deleted the little baby's details they had sent me in error. I also expressed concern that they may have sent Beatrice's details elsewhere. Their response was quick, and they made the briefest of apologies, which made my decision for me. I cannot work with a company who just see Beatrice as another dead child. Not her, no way. So, on my mother's advice, I picked myself up anew, and put the rage behind me. Dh contacted the local stonemasons who created my Nan's and Dad's headstones and they were so very helpful. They told dh what we could have, and felt that our wording should be approved after all. I'm sure it won't come as any surprise that under her name and dates, we want inscribed, 'A life filled with love, is a life worth living.'

Oh Cup. So sorry you had to go through that with the headstone people. Of course, your chosen inscription is so perfect - beautiful and apt for Beatrice. And has me bawling at my laptop.
So much love to you all, you brave woman.

(kick the GP in the nads next time you see him and when he winces, tell him it can't possibly hurt!)

Honestly Cup, I despair at some of the people you have had to put up with. Your perfect inscription made me burst into tears as well.

I suppose I can understand why Diocese want to keep some controls over headstones, but it does seem harsh. I am surprised though that they have to approve the wording.....

I've only just read your story but I'm in awe of your strength in the face of some completely shitty situations. You're amazing.

Oh cup it shouldn't be like this. I am so sorry to hear that you are having to deal with such massive insensitivity on every front.
I hope that you are able to get the right headstone for Bea. You certainly have chosen the right words. x

That is so bad Cup - your GP obviously has had an empathy bypass, how dare he suggest how you might be feeling. Is there another you can see next time? I do hope so.

As for the headstone, it seems incredible that a company dealing with bereaved families can be quite so insensitve, you did so well NOT to go mad at them. Your chosen inscription is beautiful, you have such a way with words. Best wishes.