Additional Needs

Letting Go

Posted by Lizzie Deeble on 25th February 2020 Additional Needs, Advice & Support, Disabilities

Share this article

We recently moved house. Not because we wanted to or even because we had found somewhere else to live.

We moved because my 5 year old has Duchenne Muscular Dystrophy. This means that although he is currently mobile, he will become fully wheelchair dependent over the next few years and loose upper body function after that.

Somewhat ironically, 2 months before he was born, we bought a cottage style house for our future family that couldn’t have been less able to be adapted for his needs .

When he was diagnosed at 2 and a half, we knew we couldn’t stay.

I am going to be honest and say that leaving our house was one of the things I have found most emotionally challenging since Sebastian’s diagnosis.

There are so many complicated reasons for this, the biggest of these being a grief for the loss of the life I had planned, the future I had thought about without even knowing.

Moving out of our home was a very physical manifestation of all everything that Duchenne has changed. It made me question the progress I have made towards acceptance on this journey. It reminded me that grief is not a linear process.

It reminded me of how very frustrating that fact is.

But we have now moved into rented accommodation while we look for our future family home.

I don’t feel settled and I am desperate to find the right place. But I do feel different. The complexity and depth of my reaction to moving has been met by an equal relief in letting go.

It may just have been a house but letting it go actually meant letting go of the life I thought I had. And is has surprised me to learn that there is freedom in that.

I think it caused me so much pain because I fought it so hard.

There are so many times since Sebastian’s diagnosis when all I have wanted to do is close my eyes and go back to life before it happened.

Somehow, moving out of the house we chose before Duchenne means that there is no way back, it means this really is our life now.

And in letting those dreams go, there is more room for the new ones that really matter. And for the joy they will bring.