Trust in Us

Since this journey began, many people have told me how well I'm doing, how well I'm coping.  I know they mean well and I view it as a compliment that people think I'm doing well.  It gives me comfort that I am providing the strength and stability that Hugo needs me to.  That I am getting something right in this mess of a situation.  But, it has also made me question how I 'should' be doing. Am I in denial? Has the enormity of the situation yet to hit me?  Or worse, am I just an unemotional, insensitive person?

I am a planner by nature, I love nothing more than a good to-do list.  I always have little projects on the go with timetables and schedules.  I love researching ideas, planning holidays and such like.  I don't always get a chance to follow through with my ideas, but I love the planning and the dreaming all the same.  I suppose Richard and I have approached Hugo's illness in much the same way.  It's what we do, it's who we are and it works well for us.

In a way we don't have a choice.  Hugo's illness is bigger than all of us and it has to come first.  Our life has to revolve around his appointments, his medication, his needs.  We need to be in control because his life depends on it.

However, much of the time we don't feel like we are in control.  We are scared and afraid of what is happening and of what lies ahead.  We don't feel strong, we feel vulnerable and alone.  We call upon our coping mechanisms because that is what we have to do.  There are practical issues to sort, childcare arrangements to be made.  There's no time for sitting in a corner sobbing.  Life goes on and we have to too.

But, what if this isn't normal?  What if this isn't the way we should be dealing with it?  Have we painted on the brave smile a little too thickly?  Sometimes selfishly I wonder if I've missed my window of opportunity to fall to pieces.  I've shown myself to be in control now.  What happens if at some point the haze of shock lifts and reality kicks in with a  burst of emotion so powerful that I can't cope.  If I need to sob uncontrollably on someone's shoulder?  What will I do if my coping mechanisms suddenly abandon me?  If it all just becomes too much to bear.

I suppose I will just have to trust in us.  Accept that there are no right or wrongs in a situation like this.  There is no normal and everyone's journey will be unique to them.  We are coping in the only way we know how, the way that works for us.  We will call upon our trusted mantra of one day at a time.  We will put our faith in our wonderful family and friends to be there to pick us up should we falter, to put us back together if we fall to pieces, to provide a shoulder for the sobs should they come.  We will keep on keeping on, one day at a time.


  1. Beautiful. I'm so glad you are doing okay - at the moment - but any time you're not, just fall lady - there will always be someone who cares to catch you xx

  2. I could have written a lot of this post myself. I get told often that I'm coping amazingly, that we're being brilliant parents - but really, what choice do we have? Who, in this kind of situation, wouldn't just soldier on and deal with every event and every obstacle as it comes? Is there any other way to face what's happening? There are moments when it would be easy to give in and be overwhelmed by the enormity of what could go wrong, what the worst outcome would be, but I think as parents we just know instinctively that we can't give in to that, our babies need us to be strong and positive because if we can't do that, who will? That said, if the tears do need to fall, then they need to fall. I haven't kept it together the whole time, there have been moments when I felt so sad about the whole situation and the knowledge that I couldn't do anything to make it better. Sometimes a little cry gets it all out and makes you feel ready to fight on xxx

    1. Thank you. Sometimes a good cry is what's needed x