Today I cried

Today I cried.  Not a huge great sob fest, just a little tear, catching me unaware.  I cry fairly easily.  Sad books or films on the TV, even adverts have been known to set me off.  However I don't often cry  because of Hugo's illness.  I think the fight in me stops me, it just feels pointless, a waste of my time and of no use to Hugo.  But today I did, just a little.

I was at Hugo's first hydrotherapy session.  He hadn't wanted to get in the water. He doesn't like change or things that are new, it takes him a while to get his bearings and I wasn't surprised that he was a little unsure.  He'd cried as I was getting him ready and told me he didn't want to do it.  But there he was, in the water, kicking his little legs and smiling.  I suddenly felt a wave of emotion rush over me.

There was my son, who I had just a few minutes ago pushed into the room in a wheelchair.  My little boy who needs physio twice a week because his legs are no longer strong enough to hold him up.  How did we get here, how did this become his life?  I felt so incredibly sad for him.  For all that he isn't able to do, for the huge great chunks of his childhood that he is missing out on.  

But there was my son, who despite being unsure and nervous, was there in the water, giving it his all. My little boy who doesn't let the weakness in his legs stop him smiling and having fun.  I was overwhelmed by pride for all he is managing to overcome and the amazing little person is he growing up to be.

There was my son, who has a life limiting, serious illness, but is still here.  Who is fortunate that these medications exist, because despite the horrible side effects, the alternative is so much worse.  I felt so thankful, so very lucky that this fantastic little man is still in my life.

So I sat there, by the edge of the pool, grinning like an idiot at my amazing son as a tear trickled down my cheek.  Feeling incredibly sad, overwhelmingly proud and so very lucky.

Watching and Waiting

When Hugo started the maintenance phase of treatment 14 months ago, we were warned that there would be hospital admissions.  That Hugo's low immunity would make him susceptible to infections and that his inability to fight these infections would likely mean IV antibiotics administered in hospital.  It wasn't a case of if, but of when.