I genuinely can’t believe you’re three! THREE YEARS OLD!! You’re not a baby anymore, you’re a little boy. An incredible little boy at that.

Your third birthday has been very different to your first and second. Your first birthday was a little hazy for me. I remember sitting by your side and watching seize the exact minute you turned one. I remember my heart breaking and spilling over with the amount of grief I felt, because it’s not how your first birthday should’ve been. It’s not how anybody’s birthday should be! Our world was dark then and we smiled through various celebrations knowing that the day after your turned one we would be travelling to Addenbrookes to meet a team and receive your full diagnosis. We purposely kept that appointment quiet so that there was no talk of it during your celebrations. It’s only now, when I look back, do I realise it was all quite strained.

Then we had grand plans for your second birthday, lets go away. We thought that taking you away would alleviate the demons of your arrival and your first birthday only we ended up in hospital, in Paris! I held you whilst you screamed until you passed out, not understanding why you were there. I cried with you and for you. We watched whilst the nurses carried out procedures (we have since found out) are banned in the UK for safety reasons. We survived that day knowing that a couple of days later we would return to Addenbrookes again for you to undergo an operation.

Both of those occasions we tried our best to smile through everything and be strong, to let you know all would be okay. In fact my heart was heavy and the immediate future looked so terrifying to me. I can say that now. I couldn’t say that out loud, and especially not to you, back then.

This year I could breath normally, well what I class as normal anyway. This year has been the calmest and most stable year of your short life. We attempted the ‘going away’ thing again. This time not so far, and just us. It’s also relief to say we have nothing hanging over us; no appointments, no immediate dangers or fears. We were able to sit back and enjoy you and our family time. It was a pleasure to see you laugh, smile and enjoy yourself. That’s all we’ve ever wanted, and will continue to want, just for you to be happy.

It’s difficult not to be reflective at this time. We have more now than we dreamed of a couple of years ago. The day after your first birthday, that trip to Addenbrookes, they couldn’t tell us whether we’d even get this far and if we did what it would look like. I couldn’t bring myself to look this far ahead. I still can’t bring myself to look too far into the future. Three feels like an incredible blessing. Although it’s an honour to watch you grow, see you age and find your own way to navigate your world I also feel a sense of sadness that you’re growing, that you’re no longer a baby and actually a little boy now. I’m sure it’s normal. Rationally, I know you will still need me and it’s not like you’ll suddenly become independent and move out. I guess I feel like the last three years have flashed by in a blink of an eye and I’m scared, if it continues at that rate, I won’t remember everything.

As always Master Freddie Cheese it is an honour to be your Mummy. This year I have watched you grow into an even more loving and cuddly little boy. The way your eye light up when you see other children playing and your love for nursery melts my heart. Not to mention your cheeky sense of humour, it gets me every time – Daddy would say you have my humour and my laugh, I like that he says that. You are still crazy in love with books but at least you’ve introduced trains (and anything with wheels) so that category has expanded a little.

I don’t know what come’s next but this time, here and now has been my favourite.


Louise Ormrod
Louise Ormrod

I am Freddie's Mum, and this is his journey through my eyes. Freddie has Maternally Inherited Leigh Syndrome, which is a Mitochondrial Disease. This disease is degenerative and has no cure.

    1 Response to "Dearest Freddie…"

    • Claire Wright

      Happy birthday Freddie. You memories of his first birthday and that darkness brings back memories that no one should have. Both you and Freddie inspire me to keep on keeping on. Your positivity despite all you face is incredible. Xxx

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