Sometimes it feels like you were here a very long time ago and we’ve been adjusting to your absence for many years rather than only 16 months.

Sometimes it feels like I imagined you. That you were never really here, but a dream I had. Everything that happened over those four years was just all in my head.

Sometimes it feels like you never left us. You are just at school, or at Julia’s House. You will come home soon and I will unpack your bag, put your pump on and give you a cuddle. I can go for walks and almost feel like when I get home I’ll have to get things ready for you. There are mornings when I can almost believe that if I go downstairs, one of your carers will be there on the sofa holding you in their arms, or they will be busy in the kitchen preparing your medicines.

Sometimes it feels like you only died yesterday. I remember that day far too vividly. A day spent wondering what on earth were we going to do without you. Those phonecalls I made. I can remember the exact words we said. Hearing the silence as they were taking in the news, listening to their hearts breaking. But it was a day packed full of love too. It can feel like it has only just happened. That rawness is still there. It’s still so terribly sore.

Sometimes I find it strange to think that there are people who never knew you. They spent those four years not knowing anything about you, they didn’t even know you existed. How is that possible?

Sometimes I think that you are here in our home. You are in our memories. You are in our smiles. You are in our joy of your little brother. I think part of you is living on in him. There is a certain magicalness that you left behind in him.

Sometimes I feel that we will never be OK. But we don’t cry as much as we did. But when we do cry, we cry just as hard as ever.

Sometimes I think there was a purpose to you. More than just being our son. You were here to help us and I don’t just mean your Dad and I. You had an effect on so many people, that there lives will never be the same either. They feel your loss too. But they also feel the way you touched their hearts. Maybe your purpose was to bring us together with some wonderful people. Maybe it was to show us about true, unconditional love. Maybe it was to make us the best parents for your little brother.

Sometimes I feel so frustrated that you are gone, I just want to punch a wall. It’s something I cannot undo. I can’t throw money at it. I can’t do anything. It is something beyond everyone’s control. I feel quite desperate at the permanence of it all. And how someone so big and important as you could suddenly go.

Sometimes I feel relieved that you are at peace. No more seizures. No more medicines. No more prodding and poking. There is no more fear. The worst has happened.

I always feel proud that I was your Mum. And will always feel proud to tell people about you. Thank you for being my boy, my son, my angel up with the stars.


4 thoughts on “Sometimes

  1. Such a poignant but lovely letter; you are so good at expressing your feelings. I’m sure there are others out there who feel similar who will get great comfort from the shared understanding. Sorry that you have to feel this way x

  2. This is such a wonderful piece of writing Zoë. So incredibly sad but so true too. I’m so glad to have been one of the many people that Samuel touched with his beautiful life and although I miss him so much I’m relieved he is at peace.
    I wish I could make things better and I want you to know that meeting Sam and getting to spend time with your family are some of my fondest memories and I will forever remember how much I loved coming into work and cuddling Sam and stroking his cheeks and looking into his eyes and knowing that he was the most amazing boy I’ve ever met!
    I’m absolutely sure he is up in the stars watching over you and he will always be your beautiful little boy!
    I feel his presence all of the time and he will never be forgotten.
    I hope you’re doing well and I miss you xxxx

  3. This is so real, so raw, so beautiful. Thank you for sharing Samuel with us. I know I am forever touched by him and by your wonderful words. What a great tribute to sweet Samuel. You are a good mom and I know he is proud of you. Hugs to you from the US.

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