I have been thinking about the future a lot lately and wondering what it may hold for us as a family. I try not to look too far ahead and just concentrate on getting through the day, the next appointment, the winter ... but sometimes it is hard not to worry and the stark reality hits you in the face.
I took part in some research recently. It was about support and services for the families of children with life limiting and life threatening conditions. I tried to mentally prepare myself but it really opened up a whole can of worms, reminding me of memories I hadn’t even realised I’d suppressed and brought up feelings I’d not even admitted to myself. Perhaps the most difficult question of all was the final one – “when you look in to the future, what do you see/ what do you want?
What do I want for the future? First and foremost, I want there to BE a future! For us. For all four of us as a family. I want Little H there, smiling and happy.
And if the worst happens? I want to be able to look back over his life and know I did the best for him. That I made his life happy and complete, that he knew he was loved.
And I want him to see the sea.
Many of you know how scared I have been to leave the house with Little H. It is not an irrational fear either. Having resuscitated him twice now at the side of the road, I am terrified that his last moments should be spent lying in the cold and wet. There is never going to be a good time, but cars rushing past while I kneel in the mud trying to get him to breathe surely has to be one of the worst.
But I am also terrified that my fear will prevent him living as full a life as he could. That he is missing out on experiences that would make him happy because I am too scared to take him out. I am slowly starting to take more calculated risks – “he is happy and well today, so less likely to have a seizure, we’ll take a short drive out.” And so far it has paid off. I am terrified though that one of these days I will make the wrong decision.
On a recent trip out we made it to our local children’s hospice. And here again I was confronted with the stark reality of the path that potentially lay ahead. On the one hand, I met some severely disabled children; it scared me to think that one day Little H will be that size and need that level of care and support. He isn’t two yet – just a baby so it doesn’t seem such a big deal. But when he is a teenager, people will see him as severely disabled. They won’t see my little boy, my beautiful smiley H, they’ll see a man unable to sit, walk, talk, eat, use the toilet, to attend to any of his own basic care needs. They will see a severely disabled young man. They will see, I am ashamed to admit, what I saw when I looked at the others in the hospice.
And that is his best possible future.
His worst? Our worst? Walking through the memorial gardens in the grounds of the hospice, seeing all the pebbles in the stream etched with children’s names, the benches with plaques and the birthday balloons tied to the railings, deflating. Imagine seeing my little baby’s name here?
The alternative is much worse. The alternative is terrifying. I can not bear to imagine it.
I have a friend whose child died at 11 months old. Another friend whose baby was stillborn at 40 weeks, just days before his due date. And my sister died at just two months old. Their mothers, my own mother, would give anything to have just one more day, just one more hour, to hold, to love their child, regardless of how disabled they were, regardless of what the future held, regardless of how much time they had left together.
When I feel sad and scared about our future, Little H’s future, I try to remember that. He is mine, he is here and I love him. Surely that is all that matters?