Thursday, 24 January 2013

Another birthday

It's my birthday today and I had a lovely morning with my children. They woke me bright and early with gifts and cuddles-my favourite and a yummy cup of tea. we all went out for breakfast to a fabulous cafe near the river and a park, perfect for the kids. Far better way to celebrate my birthday than out to dinner without them.

Its the afternoon now and I'm laying next to Jayden as he naps. I have this terrible sinking feeling about life in general and how it's just really not fair for so many. I'm 44 today and two days ago I know another beautiful child passed away from this dreadful disease ATRT. All I can think about is that family right now and how they will never get to celebrate another birthday with their son. Why do some people get to live for ages and others not long at all. I wish I could have shared some of my years with this beautiful boy. God knows he deserved so much more.

I look at my boy Jayden now and wonder how many years he will get. I always think about it and hope he sees many.
Right now I can't wait to be celebrating his 3 rd birthday and hope to God he gets so many more. But I don't know that, nobody does. Everyday I know is a blessing and every birthday a miracle. For me getting another year older is insignificant in comparison to the days, minutes, seconds that my son has with us. I don't care that I'm getting older, only that he does.

I'm sad, I shouldn't be as I have had a great morning but I always carry my heavy heart with me. Somedays it weighs a tonne and others not so much. Today a birthday celebration makes me sad. Sad that many wont see another year and sad that because I love my son so much the thought of not celebrating another birthday with him kills me. I know that's not so now, I know he's with me and god knows I am so grateful for that. Laying with him now is truly the most beautiful thing, hearing his breath, seeing him so peaceful, knowing he's with me. But as I soak that beautiful moment up I also want to cry. No longer do I have the free and easy mindset of not worrying about tomorrow but instead thats all i worry about. how many tomorrows will I get. How many moments will i get soaking him up. And with every child that passes away with this dreadful disease my heart aches more. For my son carries that same awful risk.

Never have I been more grateful that I have had a life than when I entered this world of childhood cancer. That i got to grow up, have a childhood, become an adult and now a parent. Never have I been more grateful that I am another year older, and never have I felt so sad that I was given so many years and so many children so few.

This journey truly is a lifelong one. it never stops hurting, the fear never goes, the sadness stays and it constantly reminds you of how grateful you should be for every second that you get.

There truly is nothing fair in this world and sadly our family and many others have been thrusted into the very reality of that unfairness. We live it everyday.

It's my birthday today but my Birthday wish is not for a new dress, shoes, whatever but for a cure. A wish that sees innocent children celebrate many birthdays instead of being robbed of them so early. A cure that sees my family stay as the five it were meant to be for as long as we all get old. That all my children celebrate many, many birthdays together. That's my birthday wish.


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1 comment:

  1. Hi Leisl,
    I have followed your journey with Jayden. I lost my son Callum aged 7 to DIPG. My older son is now 18. There was 7 yrs difference between my boys. Everyday is spent with worry. A year to othe day Callum died my oldest son/now only son was diagnosed with a terible auto immune disease brought on by ptsd. Make the most of every day. That's all that matters.
    Every day brings a day closer to a cure. Keep that in mind. Yours will be the good news story we all need to hear.