This is how I feel when I look at my amazing son Joshua. He is caring, compassionate, smart, patient, independent and most of all the best big brother any mother/ sibling could hope for.
The thing is, at the age of six he shouldn’t really be the person he has already become or dealt with hurt he has already experienced. He has a wise pair of shoulders on such a little body. Joshua is the big brother to Harry who is four.
Harry has an undiagnosed condition. Joshua’s priority should be what to watch next on the TV, how muddy he can get whilst playing football and which girl he fancies at school.
Instead making me happy and looking after his brother has always been his priority: from helping me flush Harry’s gastrostomy feeds to learning Makaton so others can understand what his little brother wants/ needs – his skills are endless!
I feel guilty and grieve every day for Harry and the life he will miss out on. His life is tough and I wish I could change the path he has to follow.
I see the sadness in people’s eyes when they are with Harry; the look of relief they secretly have that our nightmare is not happening to them. I never see that look towards Joshua. Maybe he needs that look too, he misses out on so many things and his path isn’t going to be easy either.
We cannot just hop in the car and go exploring on the moors, we have to plan every simple thing, things that “normal” families take for granted. This isn’t fair.
The amount of times I have bumped into someone in the supermarket and they have asked how Harry and I – poor J Joshua just stood there. He never grumbles and always smiles politely. To be honest it makes me angry. He is just as important.
At times I am guilty of putting Harry’s needs above Joshua’s. This is quite simply because I have to.
Writing that down is heart-breaking for me. I try to give Joshua the time he needs; the quality time he deserves. I try really hard however also as a single parent (something else Joshua has had to deal with) and this is challenging (that’s the polite term). Don’t get me wrong I have a brilliant family, a new partner who adores both the boys and friends who go above and beyond however we all only get one mummy and one childhood.
Being a sibling to a special needs child is not something that can be changed; I guess as Joshua does, it’s something to embrace. Life is what it is, we make the choices we make and we live every day as it comes.
I know in the future Joshua will grow up to be the most amazing man possible – this is something I am proud of. I just hope the journey there is painless for him.
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