This morning I woke up feeling like I’d jumped off the Duchenne rollercoaster. You’d think that would be a good feeling but instead I was hit with a wave of guilt. I felt guilty that I haven’t cried for a few weeks. I then felt guilty for feeling guilty about that. I’m being strong, why should I feel bad about that? Then I panic that people may think I’m ignoring it all and coping TOO well. Does that make me uncaring? I either feel like I care too much or not enough, I can’t find the balance. I find the weeks are slipping by very quickly at the moment and I’ve not been great at updating my blog. I find this quite odd as my emotions have been all over the place lately. I have started about 3-4 blog posts over the last couple of days but I’ve never finished them. I’m not sure if I’m in denial of my feelings at the minute and part of me doesn’t want to open up incase I have a dreaded relapse.
I’ve got to that point where I feel like normal life should be resuming and I feel responsible for maintaining the strong ‘coping’ impression that everyone has of me. But that’s exactly it, it’s an impression. I don’t feel strong inside and I’m not sure I can keep this impression up much longer. The other part of me thinks that actually, this has changed my life in many ways, maybe I’m being too hard on myself and I should still be falling apart?
Which brings me on to the question of ‘what is normal’? When you stop to think about what normal actually is, it’s impossible to answer. Was my life ‘normal’ before Hugo’s diagnosis? Is life in general ever ‘normal’? Our lives change on a daily basis, it is difficult to define what normal actually is. I’ve come to the conclusion that life is everything but normal. What’s normal to one person is completely extraordinary to another person.
Things are happening all over the place right now. Duchenne makes everything difficult. The flu vaccine caused complications for Hugo, he has to have his tonsils removed which is a standard operation, but for Hugo it becomes a risky operation. I’m faced with difficult decisions on a daily basis. I had a conversation with someone the other day who said that I put things into perspective. This particular person is a huge inspiration to me. To hear those words from someone who I look up to was touching and gave me a much needed boost of strength when I felt like I was having a rubbish week. They were worried about whether their child should have the flu vaccine but then remembered the decisions that I’m facing everyday and came to the conclusion that worrying about a flu vaccine was rather trivial in comparison. However, I don’t feel that way at all. Before Hugo’s diagnosis, I too would worry about whether the flu vaccine was the right thing for my child. I would panic about a sickness bug, a common cold, even a bad mood. Parents only worry about what they are currently faced with. Just because my child has a life limiting condition, doesn’t mean that other parents should feel guilty for worrying about something like a flu jab. For a parent of a healthy child, it is perfectly acceptable to worry about things like that.
As I’m sat here writing this, I’m yet again thinking ‘oh just delete this, I can’t get my head around what I’m even thinking’. I genuinely don’t know how I feel at the moment. In one respect, I’m glad that life has become very busy again as it is preventing me from overthinking, but then I’m worried that it’s all going to catch up with me one day soon. Half term is only 3 days away and I think we are all ready for the break. It’s been a whirlwind few weeks, it’s flown by, but I think I need some time to reflect on the past few months and re-gather my thoughts, ready to battle through the next 4 months. At the end of the day, it has only been 4 months and the real Duchenne journey hasn’t even started yet. I feel like this period in our lives may be the calm before the storm, so for now I am going to carry on as I am and enjoy life for what it is.