On the way home after a lovely mini break with the boys, one of my favourite songs came on the radio. The boys were asleep so it was a peaceful journey and it’s the first time in a long time that I’ve carefully listened to the lyrics of this song. It is of course a ‘love’ song about relationships, but the lyrics were just so fitting and perfectly described my feelings. I am currently battling with the possibility that Hugo could have inherited DMD from me. I always said I would never allow myself to feel guilty as it is not my fault at all, but that feeling is impossible to shake off and it is constantly on my mind. Guilty conscience, I guess you might call it. I’m also waiting for that feeling to go. From speaking to other Duchenne mums, it’s a normal part of the emotional rollercoaster to feel responsible for passing on Duchenne to one of my beautiful boys. And my head is spinning, I do feel isolated, and a million questions about Duchenne are constantly whizzing around in my head. I’m sure when this song was written, Duchenne was certainly not in mind. However, it really did sum up my feelings this afternoon.
All Saints – Never Ever
My head’s spinning, boy I’m in a daze. I feel isolated. Don’t wanna communicate.
I’ll take a shower, I will scour, I will rub. To find peace of mind, the happy mind I once owned, yeah.
Flexing vocabulary runs right through me. The alphabet runs right from A to Z. Conversations, hesitations in my mind. You got my conscience asking questions that I can’t find.
I’m not crazy, I sure I ain’t done nothing wrong, no. I’m just waiting, ‘Cause I heard that this feeling won’t last that long.
Never ever have I ever felt so low. When you gonna take me out of this black hole? Never ever have I ever felt so sad. The way I’m feeling yeah, you got me feeling really bad.
Never ever have I had to find, I’ve had to dig away to find my own peace of mind. I’ve Never ever had my conscience to fight. The way I’m feeling, yeah, I just don’t feel right.
I’ll keep searching, deep within my soul. For all the answers, don’t wanna hurt no more. I need peace, got to feel at ease, need to be. Free from pain – going insane, my heart aches, yeah.