I haven't posted here for over a month. We have had so many things happen as a family and also obviously we are in the middle of the Covid-19 emergency. In the middle of us starting our second week in lockdown the sun finally decided to show its face which has meant the start of tidying up the garden. Emily cleaned up the decking where Dominic used to spend all of his time at home in the nice weather. It was also the place where the last photos of Dominic were taken.....on his Birthday last August. Obviously in these troubled times people are losing loved ones everywhere, literally all over the World, and I have to admit that I feel guilty for being wrapped up in my grief over losing Dominic. Normally I would be wanting to sign up to help. This time I can't. I am no use to anyone added to which I've not felt great this last week. I think it's a head cold but who knows? I keep thinking how frustrated and irritable Dominic would be about having to stay home 24/7, ho...

Happy Valentines Day Darling Boy ❤ Today I took you some roses. Your Auntie Lynn took you a rose and, like she's done every year since you reached your teens, she also took you a Valentines card. This year it didnt have a '?' .She signed it. This year you weren't here to open it and look at it with confusion. It wasnt your Birthday or Christmas so why did you have a card? You liked looking at them though. This year you didn't come back from Oakmere, where you went 4 days a week, with a handmade card or gift for me. This year you weren't here.😢 I love you so very much Dominic. I always did and I always will. I ache to cuddle you, kiss your cheek, twiddle with one of your curls, hold your hand and hear your voice, see you smile, smell your aftershave, hear the whirr of your wheelchair, hear you giggle when I tickle you.....I just ache for you. If only Heaven had visiting hours.❤ 😭

I've seen alot of quotes all over Facebook relating to losing a child, at whatever age, since Dominic passed away. (I find it hard to say died. I dont know why but 'passed away', 'left us' , 'lost his battle' and so on seem a lot less devastating than died. When I think that Dominic has died it takes my breath away.... literally) Today another Mum of a Duchenne Boy who had recently passed away posted an image with a quote that said it all which I'm sharing here. Another quote I've seen on the internet that really is 100% accurate is:- 'Losing an adult child feels like having entire chapters of your life torn out and shredded'. That one sums up the way I've been feeling lately. As I said to my friend today, I find it hard to just have the memories now when I've spent the last 25 years making them. I'm not ready to live off my memory bank - shred the pages. I want to make more memories with him - more chapters. It's like be...

After he had a bad case of pneumonia, I had been told in February 2017, that Dominic was at end of life by a consultant at Queens square who cared for Dominic's Duchenne. Dominic hadnt long been out of hospital and it can take months to recover so he still wasnt himself and was still quite breathless. The consultant wrongly thought this was because of the DMD. Thank God, then, that it wasnt. Anyway...It was enough for me to go into the mourning process then and my Doctor organised counselling. It helped as the counsellor was lovely. Today I started counselling with her again.....this time in the most tragic of circumstances. Today we only skimmed the surface really. The next session will be a tough one. Discussing Dominic and his end of life. I then dropped two pouches off that I had knitted for orphaned joeys and other critters to go to Australia. On the way back to pick Ben up from school, I decided to go into St Stephen's church, where Dominics old school, Watling Vi...

Like the title says....Today has been bad. I'm typing this out on my phone looking through swollen eyes. My vision is blurred and to be quite honest the temptation to throw my phone,or something else, at the wall and scream is over powering at times. I feel so ill... My chest hurts ( I have another infection), I'm breathless and I have another uti. I got out of bed at 1.30pm and I've spent all day in a dizzy state. I've had test after test since my hysterectomy two years ago as I've not been right since then. I developed pneumonia after the operation and, on top of that and recovering from the op , they discovered they had made a hole in my urethra so I had the second op in 7 days and came out of hospital with a catheter for two weeks afterwards. I opted to have a hysterectomy due to the fact that I kept ending up in day surgery as I kept experiencing unnatural bleeding. Because my Mum had died of cervical cancer they didnt want to take any chances. The bleed...

I have put a link on this page for Duchenne UK which tells you everything you need to know about the condition. It also has a donate section if you would like to help fund research to beat this evil disease. Below is a summary about DMD Duchenne muscular dystrophy, sometimes shortened to DMD or just Duchenne, is a rare genetic disease. It primarily affects males, but, in rare cases, can also affect females. Duchenne causes the muscles in the body to become weak and damaged over time, and is eventually fatal. The genetic change that causes Duchenne — a mutation in the  DMD  gene — happens before birth and can be inherited, or new mutations in the gene can occur spontaneously. Duchenne is caused by a genetic mutation  that prevents the body from producing dystrophin, a protein that muscles need to work properly. Without dystrophin, muscle cells become damaged and weaken. Over time, children with Duchenne will develop problems walking and breathing, and eventually the ...

When Dominic was born I was a single mum. Dominic wasnt planned and I had been working in Cyprus when I fell pregnant. I came home to the UK after being unable to work through things with his Father who is Cypriot. From the minute I found out I was pregnant I knew this little being was going to change my life and when I laid eyes on him in the early hours of August 23rd 1994 I was in love. My sister, Lynn, who was at the birth felt the same.. She also had a special relationship with Dominic. He was beautiful and the nurses on the maternity ward in Watford kept asking to hold him and would do their rounds with him in their arms. (Dominic arrived 5 days early and he left us on his due date 25 years later.)   A DAY OLD DOMINIC Dominic was a very hungry, colicky baby and I was convinced that his crying and discomfort meant he was seriously ill. My health visitor would scold me saying that he was a healthy,beautiful boy and to stop worrying as I would make myself ill....