Grieving is forever.....

Dominic has now nearly been gone for 3 years. 3 years on 28th August.

I'm still grieving and I always will be grieving. Each day's that he isn't here is another day longer since I last saw him and I miss him so very much.

Every day that he's not here numerous things remind me of him....a record, a film, and the stupidest little things like a food item, a tree, an insect... pretty much everything and anything.
At the moment I'm on holiday with my family and my sisters family on a farm near the coast. I can imagine Dominic wheeling himself around the beautiful gardens, going to see the animals, on the beach. I see him everywhere even though he's never been here. It's too painful to go back to places we've been with him. It's painful enough in new places without him.
I spent every day with him sometimes a long time, sometimes part of the day and sometimes all day and night. He was my everything and I loved him completely from the day he was born.

When he was diagnosed ( one of my earlier blogs was all about Dom being diagnosed) I started grieving. He was 3 years old and I grieved for the boy he would never be, for the mans life he would never have the chance to live. All the time he was here he deteriorated due to his condition... his walking got worse, he fell down, he went in a wheelchair, he couldn't move his arms anymore, his hand muscles stopped working, his heart didn't function as well, he had to use various machines and take various medication to help his heart and lungs.. and so it goes on...
Any mother with a child/young man with Duchenne will tell you that they grieve for the chances and quality of life that their son, and occasionally daughter, would never have and every birthday or New Year is spent wondering if they will be there for the next one.

There were a few times when I nearly lost Dominic... The first was in 2013 when he had septicemia and he became very unstable. We had medical staff run to his room a few times then. The second time was in early 2017 and I was told he was at end of life. It wasn't true and should not have been voiced but that started me on the road to deep grief even after he recovered and I had to go to a counsellor for a year.
It became a reality two and a half years later....and I will ache, mourn and grieve for my son every day for the rest of my life.... But it is an agonising extension of the grief I felt as soon as he was diagnosed, mourning the son I knew I was going to lose one day for every day of his life despite all the happy, loving times we made together.
People would say that I needed to make the most of the time to we had and make memories. He's still with you etc. I knew all of that and we really did make memories but you can't turn your brain off or shut your mind down. Whether I wanted to feel that way or not, I did.

So when you have a child with Duchenne Muscular Dystrophy you start grieving from the moment of diagnosis and until you take your last dying breath. For their whole life and yours.
Don't tell me it will get less painful or pass. It won't...I know it won't.
Not until I'm with him again.

Dominic on our family holiday 2018