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 ...

Today would have been Dominics 26th Birthday. It was still his Birthday but he will be 25 forever. 💔😥 My family, my sisters family and my two closest friends went to Whipsnade Zoo in memory of Dominic. He loved it there and spent at least 5 Birthdays there as I said in my last blog entry. We visited the penguins last. They were his favourite. That was hard. Emily made a cake for him and we sang Happy Birthday to him. It was so windy we couldn't keep the candle alight. Before going to the zoo we took some flowers to the crematorium. I had decorated his bush the day before. It was a tough day. The first birthday spent without him... The first of many without him. It was weird going without him. Some of his ashes are in my necklace, and my sisters and Doms sisters too, so a part of him was with us.... But in reality he will always be with us. He is too precious and too important in all our lives to be gone totally. Happy Heavenly Birthday my darling Dom Love and miss you always. Mum...

My Darling Doodles Where do I begin and where do I finish a letter to you? There are so many things I want to say to you and yet, in life, you probably wouldn't understand most of what I will write. I could easily fill up a library full of books telling you endless times that I love you, how special you are and how much I miss you but there is so much more that I would want you to know. Maybe in Heaven you can understand more. It will be a year on 28th of this month that you left me and my life became this deep pit of despair, darkness and pain. I can't believe that it will be a year. It seems like yesterday that I left the hospital for the first time and last time without you going home with me. The pain of that whole day haunts me. Being told you weren't going to make it through the night when 15 minutes before we were just topping up IV medicines in preparation for being discharged a few days later. Life literally changed in the blink of an eye, for both of us and fo...

I can't believe that in just over 2 months it will be a year since my darling Dominic left us. The hole he has left hasn't remotely begun to heal and I dont think it ever will...and I don't want it to. My grieving process has changed and I dont know whether it's how everyone feels, normal, abnormal....Is there a correct way? A way that you are supposed to be feeling at a certain point after losing someone special from your life? Initially and for the first few months I found it hard not to cry. Tears were always there and fell constantly and easily and the ache was permanent and persistent. He was on my mind 95% of the day and it felt like I was walking through a thick fog. Now it's different. It's no easier but it's different. Dominic is still on my mind 95% of the day, the ache is still constant but I'm not crying as much. What I'm finding hard now is that when the tears do come it is more painful, more debilitating and the grief is engulfi...