Recently, a new diagnosis has come through for Thomas, my younger brother. Since he was born, it was believed he had a form of cerebral palsy, which may turn out to be untrue. We now know he has schizencephaly.
Schizencephaly: this is a rare birth defect that causes a slit or cleft in the cerebral hemispheres of the brain. These can appear on any side of the brain and tends to be filled with cerebrospinal fluid.
Not much is known about it since it is so rare. People who have this condition tend to be life limited. And of course, this is what the post is really about. We were told two weeks ago that Tom has only half of the average life expectancy, not even that much. When my mom asked the exact time period, the doctor said: “Enjoy the time you have left with him.”
Well, first of all, mister doctor man, that is not an answer. And second of all, I’d enjoy the time I have with him anyway. He’s my little brother. He may be a little shit, but he’s my little shit and I will persevere accordingly.
One of the saddest things about it is that my brothers are the only people in this world who see me as I truly am- a God. Who’s going to call me ‘sugarplum’ and ‘honey boo’ when they’re gone? That’s the real question.
A lot of people see it as a shock and tragedy. But really, there is nothing surprising about it. When he was born, we were told that neither he nor Harry would live past the night, and twelve years later, they are still here. So it’s already a miracle that they’ve lived this long. We always knew he wouldn’t have an average life span. It’s a fact we’ve always been aware of.
So when we heard this news, it only confirmed what we already knew. I guess in some ways it makes the realisation more poignant and fresh, but that’s all.
In a natural progression, you expect the parents to go first and then the eldest to youngest of children, in some kind of order. It feels strange to check yourself when you think of the future, to remind yourself that the children may not outlive the parents, and that I could outlive them all. I always imagined I’d be old and the boys would be there but I might be an only child again.
What are you sorry for? You didn’t put the cyst in Thomas’ brain. He only has two thirds of it left and they’re surprised he’s as well as he is. So be thankful for small miracles, I suppose.
I’m not sorry. I’ve had nearly thirteen years with my brothers, more than some other people have had. He could live into his twenties; he could live until tomorrow. Like anybody else, there isn’t a guarantee. He’s happy and that’s all that matters. Thomas certainly lives life on his own terms. To me, that’s the greatest kind of life he could have. I wouldn’t change a moment.