A promise to our beautiful girl…

4F7FA341-E4F3-4B65-994C-BDDBA6BCE0A4.jpegOver the last few weeks, I have become acutely aware of how much I owe to our darling daughter; for giving me no option these last few years but to keep going. If I’m honest, most of those years have gone by in a relative blur and I’m sure my memory has found ways to blank vast sections out! I certainly spent 2014-16 simply existing; finding any way that I could to get to tomorrow. But without noticing it, I’ve started to feel some of ‘me’ returning.

Don’t get me wrong, there is a part of me, the young-ish woman part of me that I fear is irreparably broken – I still have no answer for how you bring that side of you back. I will always cherish Alex, my soul mate, as he is and be grateful for the strength that has kept him with us; but I will forever miss Alex as he was….the man I grew up with, gave my heart to, planned a life with. I will always wonder about how our lives might have panned out, the children we dreamt of, how much he would love to be putting Amelia on his shoulders at the school gates or tickling her senseless!…..but the mummy part of me, the friend, the daughter…. feels a little bit more glued back together.

Why? Because our beautiful girl has shown me how to chase rainbows (and unicorns) when it rains, and to look for stars when it is dark. At 31 years old (compared to her 4 years!) I thought I would/ should be the one with the answers, but Amelia is so self-assured, so kind and so compassionate that she has shown me the beauty there is in our life now.

I think I’m slowly learning to give up making comparisons between life then and life today. I need to see the beauty in the present. I want to see the beauty in the present.  I’ve never known anyway how to refer to our family situation – life before illness/life after? But it is OUR life and I want to live it as fully as I can…. it’s the only way I can think of to repay our little guardian angel.

So Amelia, mummy wants to say  “thank you” and I’m making you a promise that there is more of me to come. I’m not there yet and I know that sometimes life for you is different to that of your new classmates; but I will get there. We will keep saving our pennies for that New York trip you dream of and I WILL take you to all the places that mummy and daddy went on honeymoon to see. The frozen hot chocolates, the helicopter flight and all those magical places you picture daddy well and happy! I will make sure you can go to birthday parties just like your friends (because that’s a big thing when you’re 4), and that you dream BIG! I will help you realise those dreams for the rest of my life. I don’t know which divine or spiritual being blessed us with you, but mummy is eternally grateful to them!

If Daddy could express it, I know he would tell you the same. How proud he is of the little lady you have become. No one makes him smile like you do. No one. He fought for you, he fights for you and it’s from him you get your strength (and cheekiness!). How blessed am I to have you both in my life, as my life’s purpose, as my driving force to be a better me?! I won’t let either of you down my darlings!

Mummy, Rach xx

 

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Life on the Scientific Advisory Board

IMG_9543IMG_9544A few months ago I learnt that I had been successful in my application to be a member of the Scientific Advisory Board for the Brain Tumour Charity. This basically means I can help in some small way by reading through research proposals and working with neuroscientists to distribute funding to the most promising applicants.

So far it has been a thoroughly eye-opening experience as I have seen firsthand just how strong the competition for funding really is. The work that the charity does still amazes me and without them, millions less would be spent on research or awareness every year.

I have truly valued hearing from other families affected by brain tumours, each with their own unique and touching story to tell. Just this week I was fortunate enough to be invited along to the Structural Genomics Consortium in Oxford for a laboratory tour. Here I learnt that it can take years to re-create the proteins required for testing (the first step on the way to finding medicinal cures) and that they are one of only a few groups of scientists worldwide willing to share their investigations with the world (other scientists keep their work closely guarded in pursuit of financial gain from pharmaceutical companies). Their hope it that this will speed up the end result that so many of us affected by brain tumours are hoping for.

The sheer scale of the equipment they require totally floored me and each piece costs thousands of pounds. The funding that the charity receives goes in some way to support these scientists in their projects. It just reminded me that although they may have a long way to go, we have some brilliant minds focusing their lives’ work on a healthier, happier future for our world. If I can support them in any way I will and I hope other people may read this and send a few pennies in the direction of The Brain Tumour Charity.

On a personal note, we have had a beautifully sunny week and I wanted to share this lovely smile with you! I’m so lucky to have a husband as wonderful as you Alex! Xx

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Adjusting to our new life…

Alex has been home for 7 weeks now and it is wonderful. To be the 3 of us again and not have daily hospital trips feels like we have a little bit of our life back again. It is a different life from the one we lived before but it’s our life all the same.

So many families that go through the pain of brain tumours never get the chance to be together under one roof and so I am so thankful….. But it’s hard. I knew it would be and yet (a bit like childbirth!) nothing can prepare you for it.

The realities are that I sleep with one eye open, get up early to organise medication, juggle motherhood and care (to make damn sure our daughter has the wonderful childhood she deserves and that mummy & daddy planned together) and most of all…. Sit quietly and very alone each evening. I could be surrounded by other people and yet still feel desperately alone because he is my soulmate (I refute any claims that they don’t exist but that’s another matter!) The loneliness of not being able to talk with Alex can be almost unbearable. Admittedly he very rarely got a word in edge ways before, but now…. What I would’nt give to hear his voice! For him to tell me I’m doing ok, doing the right thing, doing what he wants. Mostly I miss his cheeky smile and his laugh – not the average laugh everyone else saw, but his totally at ease, only in front of me ‘geeky laugh’.

But when you are in love with someone as much as I love our Alex ( and daddy!), nothing will stop me caring for him to the best of my ability, everyday of my life….. Because sometimes, I get that smile, or kiss, or few words and it all feels ok.

 

xx