Tuesday 18 June 2013

Big Brother

Posted by Mark
Lots of people have asked how Joseph, our 4 year old has been since Samuel was diagnosed with Cystic Fibrosis so I wanted to talk about that in this post.

From the moment that Joseph knew he was going to be a big brother he was very excited about having a new member of the family and about the possibility that he might get to share a room and sleep in a bunk bed. I remember vividly how eagerly he rushed forward to see Sammy when we brought him home from the hospital and how he then hurried off to get the toy giraffe he had bought to give to his new little brother.
It came as no suprise that Joseph was willing to help from the start whenever we asked him to do something to help us look after Sammy; not only is he generally a very helpful boy, but he is also clearly deeply attached to his little brother and wants to look after him and care for him as much as he can.

We wanted Joseph to know about Sammy's CF and so we explained that while he was growing in mummy's tummy, his lungs and tummy grew a little bit differently so that he has to have a lot of medicine and we have to try to make sure he doesn't get too many coughs and colds. We showed him the Creon and how we have to put it on the back of a spoon and explained that Sammy would need to take this medicine forever every time he eats. Joseph looked sympathetically at Samuel and said: "I think he will find that very boring".

Beyond that, hasn't really made any comments about it, although whilst listening to him chatting with one of his friends I overheard him say: "Did you know Sammy's tummy doesn't work properly?" so he is obviously quite aware of it. Also when Juliette was talking to some of the nursery staff one of them told her that during morning assembly when prayers are said for the sick, Joseph offered Samuel's name for inclusion. The fact that this was entirely unprompted and he didn't even tell us about it afterwards gives a glimpse into the kindness and compassion that lies at the heart of Joseph's character. And while I am not surprised, for I witness his kindness every day, I am not complacent and do not take his good nature for granted. We know that there will be times when the demands of caring for a child with CF will impact on our relationship with Joseph, but we are resolved and determined that he will not be sidelined or left out. An active lifestyle is an important element in fighting the symptoms of CF and that is something we will all benefit from and we are in consultation with Joseph about the best sports and activities for us to try!

Samuel adores Joseph and smiles and giggles every time he sees his big brother. It gave me great pleasure today to watch Juliette doing Sammy's physio in his cot while Joseph stood on a chair, peering over the side and reading a bedtime story.
I know that no matter what the future will hold for us, Sammy with have a good friend and ally in Joseph and I look forward with all my heart to watching them grow together.

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