When you have a child with severe learning difficulties and special needs, it can be important to focus on the day to day and is important to celebrate small successes and joy along the way – Joshua made us laugh in a cafe yesterday, as my husband and I were talking about cows and Joshua quietly and spontaneously said ‘moooooo!’ then casually grabbed one of his scampi and popped it into his mouth, as if that is what he usually does. Not only is your present challenging and unpredictable when you have such a child, but your future is not what you expected or hoped for either : Joshua will always need full time care , he will not be able to leave home, study then find a job and live independently. Unless we opt for residential care for him, Joshua will live with us for the rest of our lives. As we get older and frailer, Joshua will still be a strong young man who needs help dressing, changing and feeding. When I am 70 years old, he will be 35, which I find impossible to imagine.
Joshua does not have the capacity to have a partner, he will not create a family of his own. We will never be grandparents to the next generation. I am rather sad about that, as I think that I would have made a good Granny. I will not have the opportunity to take my grandchildren to the beach while on holiday, like my Granny did for me and my Mum did with Joshua and his cousin. I will not get the chance to help with the school run, show them how to bake my favourite recipes or teach them how to blow their nose – my Granny taught me by chasing a cornflake across the table by snorting down my nose!
When you have a baby, you are not consciously jumping that far ahead, but there is an unspoken assumption that the family line will continue in the shape of grandchildren and that you will get to cherish another baby with a family resemblance, only this one, you get to give back when it cries . This one you would only have to do the fun parts of child-rearing – going to nativity plays, days out together and making a mess with bright coloured paints. This one might not come with all the challenges and worries that accompanied Joshua’s childhood.
I will never regret having Joshua, just the way he is, as he is such a special young man, who brings a lot of love and happiness to our lives and he has certainly expanded our horizons, beyond what I could ever have imagined. But of course there are quiet moments when I allow my mind to wander about what could have been and how different all of our lives could have been. Never, when we learned that we were expecting a baby, did we predict, or even consider, this outcome. When he was at mainstream primary school, I was offered bereavement counselling, to explore the sense of loss of the hopes and dreams that would never be realised. At the time I was shocked and offended by the implication that something had died, but now, in the fullness of time, I can understand what was being suggested and it might in fact have been helpful.
It does not pay to dwell on these things, but rather like when you are longing for a baby, and all you can see is pregnant ladies, there are a lot of doting Grandmothers around – that must be my age – and I have to admit to feeling slightly envious of that special relationship that I will never have. I am not bitter or angry about what will never be, just a little sad. But instead of pointless sulking ,I will throw all of my energies into being the best Great Aunt that I can be, when the time comes!