We are nearly there Dominic. 😔 Nearly at the two year anniversary of the day you left me and what would have been your 27th Birthday. Every day this month is a reminder of what happened two years ago. It's a countdown and my eyes have tears behind them at all times... even when I'm talking or if I laugh. On the day that changed my life when you crashed and the doctors rushed in and I had to leave the room, one of the doctors came out of the room and told me that you were at the end of your life... that you wouldn't see the next day. I went back into your room hearing you saying 'Mummy' and asked you if you were OK sobbing my heart out. You repeated ok back to me. I told you you were a good boy and I loved you and you peacefully closed your eyes and never opened them again.I cuddled and kissed you and held your hand and whispered to you please dont leave me. Jamie arrived at some point and then your Auntie Lynn... neither were prepared for what was happening in...

My Darling Dominic, These letters are so hard to start but once I do start I don't want to stop. It's the closest I feel to communicating with you these days... except when I talk to you at the crematorium. I had a 5 day break away on my own a month ago. I never go away alone like that and it was weird without you. Holidays and breaks always included you. The break was given to me by a charity because I'm a bereaved carer and I felt I needed time to grieve and think about you without upsetting or worrying anyone else. I took your photo with me and within half an hour of arriving I was in pieces like I hadn't been since just after you left this Earth. The following day was the same. I was in a really dark place and just ached for you. The next day I went out for my own sanity. I realised while I was there that being at home with our family has helped me cope. Looking out for your siblings and Jamie and seeing your Auntue Lynn gives me a reason for being here now and...

This morning when I woke up it crossed my mind that I haven't dreamt about Dominic as an adult since he passed away. I have only had a few dreams about him when he was young and I normally remember my dreams. Recently I have had quite a few sad dreams where someone has mentioned Dominic and asked how he was and I had to tell them he had passed away. In these dreams I ended up going to pieces after revealing that my darling boy had gone.  This morning I realised why I probably hadn't had any dreams about Dominic. Maybe it's because my mind is protecting me because if I had a dream he was here and with me I would wake up to the realisation that he had gone and it would be like losing him all over again.  I don't think I could survive through that sheer grief and devastation a second time.  

  On the Internet, especially on social media, I see a lot of families who have, or have lost, a child with Duchenne. I see a lot of families of newly diagnosed boys who find it really hard to accept the diagnosis of DMD. I reached out to some and tried to help, and hopefully have occasionally, but I remember when Dominic was diagnosed that it was very hard to speak to someone who had lost a child to Duchenne as that was an eventuality that I didn't want to acknowledge at all. That WOULD NOT happen. Not to Dominic. He was a 3 year old. I remember when Dominic was diagnosed being told that 'He was young and there was plenty of time for a cure to be found.' I remember being somewhat reassured by that. After all, medical science progresses all the time, doesn't it? I remember asking constantly on every hospital visit or phone call "Is there any positive research news?" There was occasionally some developments in treating Duchenne but never a cure. As Domin...

Another New Year has started. The second since you went to Heaven... The second year that you won't be a part of. The second year that I have to get through without you.  What an awful year last year was and this year is starting off badly too. I have said a few times recently that I believe you were taken to Heaven months before this pandemic arrived because He didn't want to put you through all these restrictions. He knew the affect it would have on you and the worry it would cause us. You would have been so miserable and unhappy. Not just due to the virus but a few of your favourite carers have gone, your day centre has closed down and we wouldn't have had a proper holiday or the same days out we had. Only a very few visits from your Auntie Lynn too. And of course we would have no doubt ended up in hospital again with a chest infection/ pneumonia which would have been very frightening.  I'm sure you would have handled it amazingly as always. Smiling, dancing and lova...

Today is the 22nd December and Christmas is now fast approaching. This year I made a conscious effort to go to town with the Christmas decorations in honour of Dominic.... because he loved it so. He loved the build up,the decorations,the carols and Christmas songs, the lights and looking around shops or places that were decked out for the festive season. His bedroom was also decorated like Santa's grotto. It took me hours to do but the look on his face when he entered to see it all was pure wonder and joy. Last year all I could feel was overwhelming grief and no Christmas spirit. I just wanted to get through the season. This year I wanted to feel he was a part of it.... of us. It worked but the nearer we get to Christmas Day the more I'm feeling the loss and grief again. Christmas day was family together, all day in the house, mostly in the lounge so there is a huge wheelchair shaped gap that he should be filling. Today I took my floral bits to the Dominic at the crematori...

I haven't added to the blog since my darling boys birthday. After his birthday came all the first year painful anniversaries... The last time we went into hospital on 27th August, a year since he passed on 28th August, organising his funeral, certificate of death and the numerous details that have to be done in a pit of despair after he passed away, the two plus weeks at the beginning of September that he was in the funeral home and then finally his funeral on 16th September. Is life any easier now? Any less painful? Is it Hell! A year is such a huge deal. First Birthday, first wedding anniversary, first year together and so on. A year may seem a long time but it's a tiny fraction of a lifetime. It seems forever since I've seen Dominic as I was used to seeing him every day but it seems like yesterday that he left me. It seems like yesterday that the events of that day unfolded and my life was shattered into tiny pieces. I can remember so vividly sitting in the funeral ...