4 years today dear Thomas..since you were born…and since you died – by Simone

Oh my darling little, tiny Thomas. Today 4 years ago, you entered our world in such a big hurry at only 26 weeks and 4 days. Today is both your birthday but also the day that you died. And those 2 things are impossible to reconcile. I had tried so so hard to keep you inside me but my body had different ideas and I still have so much guilt for that. That I couldn’t keep you safe, that my body couldn’t do what it needed to to sustain you. Gosh, the 2 week build up to your arrival is…

1 month post debulking surgery – by Simone

So I thought I would write an update on my surgery as I have just passed the 1 month mark.   All in all the results are really great! My excess volume has gone from 4070 to 726. The day before the op the leg was 36% larger and now it is only 6% larger. Here is a pic to show you the improvement.   As I wrote about in my previous post I had really awful pain for the first week or so, much more than I expected. There were times that I wondered if this would all be…

My leg debulking surgery – the first of its kind in Africa.

As some of you will know, I suffer severely from lymphedema following my cancer treatment when I was 29 years old. Lymphedema is the swelling of an area due to the build-up of lymph fluid. I have secondary lymphedema which is generally caused by cancer treatment. I carry about 5 kg of additional weight in my right leg with the majority of it being below the knee. When they found the cancer in the lymphs in my groin in 2011, they had to remove the lymphs in the groin and pelvis and then also had to do 6 weeks of…

Today is your 5th birthday – by Simone

My darling beautiful Bella Today is your 5th birthday. And try as I might, I can’t find it in myself today to celebrate. In previous years I have really tried to use the day to celebrate you and the remarkable day you were born rather than letting your death override everything. But today I just can’t. I have been dreading today all week. The thought of you being 5 is somehow particularly hard for me. FIVE! Not a baby anymore but a real little person with your own thoughts, personality, vibe and will. You would have been in grade N.…

People Like Us – by Simone

I was interviewed for a book that 2 Swiss girls were doing, 6 months after Thomas died and 14 months after Bella died. They were travelling around the world interviewing people about the most influencing moments in their lives. They have put together an amazing book of pictures and stories of 80 individuals and it is such a privilege to be part of this. It was first published in German and more recently has been published in English and I was lucky enough to receive a copy. Thank you Sandra and Sandra! I look back now and I think about…

From survive to thrive…overcoming the guilt – by Simone

  Wow, its 2020! And it’s been a while since I have written. I am normally fastidious about writing on the 1st of January, sharing my thoughts on the year, and my goals, but somehow this year felt more calm, less like I needed to take the year by the scruff of the neck and stamp my authority on it. Which is a good thing I think. We also had such a lovely December holiday together as a family, some really good quality time for us with so much fun and laughter and I guess I also didn’t want to…

4 years today darling Belsie – by Simone

It’s 4 years today my darling Belsie, since you died. 4 whole years. In some ways I remember every single moment of that day like it was yesterday, in other ways it feels like a couple of lifetimes ago. The one thing I do know for sure is that not a single day goes past that I don’t miss you so very very deeply and long to see you again. As per always we went away over this time, and I really do find that this makes it easier to bear. And we had a really lovely weekend together, just…

Birthday reflections – by Simone

It was my birthday this weekend. Since Bella died, birthdays for me have been hard. She died 3 weeks after my 34th birthday and so it always felt that that specific birthday marked the last time I innocently went on and celebrated life, completely oblivious to what was to come, how much our lives were going to be completely changed forever. How my heart was going  to be shattered into a million pieces and how hard it was going to be to paste it together again. My first birthday after Bella died, Thomas had also just died and I was…

Practical things I wish I had known the day my children died – by Simone

It recently came to my attention that a friend of mine who is a remarkable photographer is part of an organisation overseas where they give the gift of photographic memories to families that have experienced stillbirths, premature births or have children with serious and terminal illnesses. The fact that she is able to give this gift to parents, something physical which they will have to hold on to, and remember their loved one by is remarkable. And it takes a truly special individual to be able to do this. Which she is.   And this got me thinking about the…

8 years in remission today – by Simone

Today marks 8 years of remission from cancer. I still need to have my annual CT scan and bloods done tomorrow, but I saw my doctors last week and they were happy with things. There have been a lot of bumps along the way, and some pretty big health scares but on these days I am reminded again what a privilege it is to be alive. To be given the opportunity to live life to its fullest. Because it really is a gift and privilege. And so today I celebrate being alive, healthy and cancer free.   It’s been a…