1 October 2013

Pinch, punch …

First of the month …


I would hate to intrude on the 12th of the month thing that Milly has going on, but just now, I was passing Alice's room and I automatically whispered, "pinch, punch" to her … sadly, she can't reply "first of the month", but you get the drift. Anyway, it got me thinking that maybe I should do an update.

Quite how we have survived for almost nine long months, I can't answer.
All I know is that our strength and endurance has been pushed and tested to the extreme.
In exchange for our precious daughter, we have been handed a lifetime of obstacles.
At times, I wonder if we will ever feel truly happy again?
And by 'truly happy', I don't mean a fleeting, six-hour stint of happiness.
Is it strong to wear a mask and continue, pretending things are as normal?
Or is real strength removing that mask and allowing everyone to see what's within?
And how does one move forward when, in doing so, we must leave Alice behind?

Forever 17

Alice was rather proud of herself for making it to 17.  Sadly, as was all too frequent in Alice's short life, she spent the entire day in bed after yet another seizure. As friends and family gathered downstairs, the birthday girl was bedridden and mumbling, incoherently about "yappy dogs" to three friends who, despite the lure of cupcakes, remained in Alice's darkened room, arranged around the hard, wooden floor. Exactly four weeks later, she was gone.
Is it strong to celebrate the milestones and achievements of Alice's friends?
Or is it strong to admit that it breaks my heart to watch them experience things she never will?

Of course, there are no answers. No wrong and no right. Just what we feel.  The death of a child is such an overwhelming event that you can't begin to understand it unless you've experienced it. No amount of professional training will get you close to the reality.

There are triggers everywhere. We watch each of her friends reach the 'next' birthday, learn to drive, buy a car, get a boyfriend. Each time we drive our cars (which we also have an attachment to), Alice's seat is empty. We go to the beach and there's the ice cream hut with her favourite strawberry ice cream. We open random computer files to discover long discarded video clips and then we have to replay them several times, just to listen to her voice. We scan restaurant menus, automatically looking for something suitable for Alice. We book four seats on a plane, forgetting we only need three. We go through the motions and cling to each other in the hope that strength really does come in numbers.

There is little we can do to remove the pain. We're coming to realise that grief takes its own course and we are but pawns in the game; powerless to dictate direction. But, we have some amazing friends who are still standing beside us and they will forever have a place, deep in our hearts. The friends who aren't afraid to speak Alice's name; the ones who can laugh with us and also cry with us. The ones who know that even though time has passed, the pain hasn't. Our true friends.

Don't pity the man with one true friend. Envy him. 
Pity the man with a thousand acquaintances.

My most hated greeting (and the reason I still haven't completed a full supermarket shop since losing Alice), is "How are you"? Do people really want to know (have they got ALL day?), or are they hoping we'll say "fine"? At which point they'll feel better because we're obviously 'over it'. I've responded truthfully just twice in almost nine months. It was a catastrophic mistake. There was huge embarrassment on both sides, followed by an awkward silence. Clearly, the reply should always be "fine" … but those of us in this club already know what that stands for!

Life is equally at odds for Milly and she too has had much to contend with. In just the space of a week, she has had to expand an English storyline about a parent, desperately battling to save their child's life; write and deliver a piece about herself for French; give a newspaper interview about scattering her sister's ashes and deal with the fact that her father is 6,000 miles away on a forced, extended business trip to Japan (I now have strong views that his company are also of the ilk that we should be 'over it' and unaffected by such absences). Each situation is not a deliberate one, but nonetheless, one we have to face.

Me & Milly, Great Gable - Sunday 29th Sept
(photo taken by a very happy climber we met up there)

Of course, we still have lots to be thankful for; it just means less without Alice being here to share it. Her bone marrow campaigning continues and in the not too far future, I hope to be up and running, visiting everything from the smaller work place to the larger colleges and enrolling in her name. Her charity remains busy helping families in need of an escape and we are on track to buy our second holiday home very soon. We spend a great deal of time outdoors with Alice's beloved puppy dogs … the mountains feel good and we feel free and close to Alice when we're wandering on top of the (Cumbrian) world. Of course, walkers are a happy bunch and smiling is infectious, so it's great therapy too. On Sunday's walk up Great Gable, Milly and I spoke to over a dozen people, one of who we walked a fair distance with … "hello" to Stuart!  In just over two weeks time, we fly off to climb Kilimanjaro in Africa and, hopefully, we'll tick another of Alice's wishes off.

Sadly, we'll only be filling three seats, but they'll most definitely be four of us onboard.

Vicky x









24 comments:

  1. Dear Vicky,

    Your pain in unimaginable and I am so sorry. I have had a few friends who have lost children and I have another whose daughter has an incurable illness. I know there is nothing I could say that would make anyone feel better. I just tell them I love them and support them in any way I can. I know it sounds dumb but sometimes you just need a hug to feel the support.

    I like your post today. I think it is healthy you allow yourself to feel. Its ok to be sad; its okay to be angry, its okay to miss Alice and you have to remember it is okay to allow yourself to be happy. I know it must seem like that will never come but it will happen when you least expect it. And when people ask you how you are doing, I think you should be able tell them the truth. Say it’s the most unimaginable pain and you are taking it day by day. People are asking because they care and they will want to help you and your family if they can. You are stronger than you think and people can also surprise you with their compassion.

    Alice’s blog has affected people all over the world and believe it or not it has had a global impact with the registry even if you don’t get to see it at that grand of a level. Moving forward does not mean leaving Alice behind. When you climb Kilimanjaro, Alice will be with you every step of the way. I also think as time goes on, you will see Alice in your everyday life and instead of feeling sad, you will start to smile.

    Sending you a hug of support from Michigan,

    Charlotte

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  2. It pains my heart to read reality. To know that there is a HUGE void in your life that will never be filled. To know that society does expect you to be fine, when clearly you aren't.

    I encourage you to read the book "Bring the Rain" by Angie Smith. While she didn't lose a child to cancer after spending a life with her... she did lose a baby that she grew to love and envision in the womb. The baby died shortly after birth, and her journey with Christ led her through the darkest hour. She has a LOT of great, comforting advice for grieving... one of the strongest bits was to not hide it... Let it consume you!

    I read every update, faithfully... have for a while - since I first found out about Alice. I don't know you, really... and I know you don't know me! But you are like family to me. I grieve alongside you.

    *hugs* from Texas, Vicky! Update more often... start a blog of your own! It is VERY therapeutic! The world loves you and is thinking of you and lifting you in prayer.

    Smile, because Alice smiled... and because she would expect nothing less in her absence. *hugs*

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  3. Thank you for sharing a wonderful post. I continue to read this blog because Alice continues. There may be only three seats, but there are four hearts and an abundance of love.

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  4. I think what you write about the grocery store is very poignant. It's hard to know what people mean when they say "How are you?" Are they just being polite; or do they really mean it? I'm sure some people really DO want to know how you are. But it's hard to know who really cares and who wants a quick reply.

    I'm sorry for your loss; I imagine the pain will go on for a very long time. (probably forever).

    Hopefully though you'll have many happy moments throughout your life as well.


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  5. I have loved reading Milly's updates - unfortunately I only came across Alice's blog after she had gone. You are all so strong and I wonder how you cope at all with such a loss. I don't know any of you but I feel I've known you all my life - take care, love to you all xx

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  6. Charlotte said what we all want to say to you and your family Mrs Pyne. There is a small army of people in the World that if put to the test, would be a true friends to all of you.I pray in some small way that our caring helps.May I just say I miss Alice Pyne with all my heart.,,

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  7. I still check in from time to time to see how you all are doing. I do not know the pain of losing a child but have a good friend who did and I understand how the normal is not normal anymore and the sad in the new normal. I pray that you will continue to share your journey and know that our here many of us loved sharing in Alice's journey!

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  8. Much love for you and Millie and Alice's father.
    hugs Karen

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  9. Vicky, my heart goes out to you...
    There are no words really...only love...

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  10. The first of the month always sucks for me too. I lost my dad when he was just 55, very suddenly a couple years back and we used to do the same "pinch, punch, first of the month". Sending you love and thoughts every 1st of the month.

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  11. Thank you for your update, it's good to hear from you. I really enjoy Milly's updates. Thinking about you all and wishing you the best of luck for your climb up Kilimanjaro. Just keep on going, one day at a time. Lots of love, Jo. xx

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  12. Vicki, thank you for sharing your very personal thoughts. Your post has helped me better understand a friend who has recently lost her daughter.
    Alice would be proud that you have continued to share every part of your journey and is a lesson for us all. God Bless x

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  13. Dear Vicky,

    Everytime I read something you write or I see something about Alice I still cry. I didn't know Alice in person; I never hugged her; I never took care of her. If I still feel so sad about her, I just can have a vague idea of your pain.

    Honestly I believe this sad feeling is permanent but, with the time - always the best medicine - it will become less painfull. Not because you will forget her, but because life goes on and you're still alive.

    Cry when you want, say you're not fine when you aren't, give yourself the right to suffer! No one will ever blame you.

    From Brazil, I send you all my love, all my prays and all the wishes that your heart get well. Not soon, maybe, but get well.

    Com carinho,
    Sheila.

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  14. Time is time, it is never too long to grieve. I lost my Dad when I was 9 (more than 30 years ago), and I still have a chat with him every now and again. I occasionally have the thoughts Dad would have been x years, or what would he have thought of this or that? I am so happy you can share your struggles and joys with us. We were all so happy to share a tiny piece of your daughter. May her memory live on and on.

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  15. All the very best with climbing Kilimanjaro.

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  16. Dear Vicky

    I hope you remember me - I moved to India earlier this year and have continued to balance my clinical work with other interests.

    I am involved with an NGO in India and we have been looking at the disproportionately greater challenges which girls with cancer face as compared to boys here. One of our childhood cancer survivors presented this in a scientific meeting in Hong Kong - which also attracted some press http://articles.timesofindia.indiatimes.com/2013-09-27/health/42458866_1_cancer-treatment-free-treatment-cancer-battle

    They now want to develop girl childhood cancer survivor champions/advocates and form a "girl brigade". All this reminded me of Alice and all of you and how one individual (and family) can be a force of change for good if one wanted to. I shared your blog with my colleagues here.

    With warm wishes to all four of you
    Raman

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  17. Thank you, Vicky, for this honest post. So many questions are unanswerable. I wish you love and comfort.

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  18. I am so mad at myself.. You're daughter is amazing! She gave me a whole different outlook on life and I've been so busy that I never stopped to check to see how she was doing.. Something told me to log into my account and go to her page and now I can't stop crying! I'm so sorry for your loss!! You're a strong woman!!

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  19. I wish I could do more. You are all in my thoughts and prayers.

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  20. I am so sorry....I so enjoyed Alice's blog when I discovered it, and her life impacted me, although I never met her and I'm in a different country. You are strong, there is no doubt about that! You are in my thoughts and prayers.

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  21. I still read but have never commented before until day after reading your very open comment. Alice was and still is an inspiration to us all. I was reading her list again today to gather some inspiration for my own bucket list and still chuckle at 'purple ipad! I think its awesome that you're heading off to Kilimajaro - she'll be with you more than ever when you are ticking off her list!

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  22. Vicky,
    If I met you, I would ask you "how are you", and I would happily stand a listen while you told me of your amazing girls' achievements and the pain in your heart. You are an amazing woman, and have shouldered so much, if all i can give is my time, and my ear you deserve it.

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  23. Vicky,

    Though I lost my mother when she was merely 60,I cannot come close to imagining the loss of one of my own 2 girls. I do,though, through the loss of my mother, understand the void and how it will never go away and how it reminds you everyday that's there. Some days the void is bearable and life for that day is okay even with happy moments and some days the void is screaming at you and its emptiness is searingly painful. Happiness is redefined, never to be the same.

    You ask about strength and I think strength is not giving in and not giving up despite the pain and heartache.

    I take my mother with me everywhere I go. Her care, selflessness, and love will always be a part of me. I have left her suffering and pain behind, though they shaped my view, that is not what shaped my heart.

    Alice's frank and wise words echo in my mind and still give me inspiration, even here in the Rocky Mountains of America. I find myself rereading her entries reguarly and greatly enjoy Milly's updates.

    Much love from Denver.

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