Letter to a Special Needs Sister
The hawk-eyed remarks that I’d heard from you over these years have left me with a distinct impression of your person. I see you now, trailing a scent of ache-relief cream you apply liberally after carrying your immobile brother upstairs and downstairs. Behind your stooped figure lies a mind capable of astute observation and inference that you use daily to work around the mind of your brother. Hair as unkempt and unruly as an old lion’s hide keen eyes that follow every change of your brother’s expressions. Caved cheeks hinting of a diet of austerity are made beautiful by the smell of your brother’s powder. I see all this and more.
After helping Yasin change, or after babysitting him for the odd hour or two, I wonder what it would be like to be a full-time young carer. I would adapt to the tasks I needed to do, but it wouldn’t be without considerable anger and self-pity. Which is why I am very willing to be let in on the secret that allows you to, with perfect patience and goodwill, look after your special needs brother. If there ever was a secret, I know you’d never preach it to me. You’d teach me in as lovely and natural a way as possible.
I know how hard any activity outside of home must be for you. Leaving your brother even to wash your hands makes you feel guilty. How hard must it be to concentrate in school? How hard must it be to be taunted for the scars on your arms that your brother scratched on you? How hard must it be to practice economy when your brother needs so many things just to use daily? How hard must it be to not have a social life? It must be hard, even though I have never experienced it.
There is no enmity or jealousy among us. I am very grateful for this, even though your brother has very serious issues and I am not a young carer. I see him now, with his rigid figure, curled toes and fingers, g-tube, splints, gaiters, bruised face, swollen head, and swinging arms. I see your brother and, I hate to admit it, but I am immensely grateful that my brother is not like yours in terms of the amount of care needed to keep him alive and well.
I wonder about the sleepless nights you’ve gone through, nursing your brother. I wonder about the nights when you cry yourself to sleep out of exhaustion. I wonder about the worries you’ve faced – financial and otherwise. I wonder about you, and my head spins. I’m in awe of you. How you could have the emotional range of a whole landscape and manage to maintain it? I have the emotional range of a teaspoon and find it hard to keep!
If you ever need help – a hug, a spare pound, some formula milk, please let me know. Just know that I love you and your brother.
Yasin’s big sister