A let­ter to... my brother, a spe­cial man with spe­cial needs

The Guardian - Weekend - - Family -

I don’t re­mem­ber you be­ing di­ag­nosed, but I know I was nearly seven and you were nearly two.

I do re­mem­ber the metal braces that were strapped to your an­kles for ex­tra sup­port when you were learn­ing to walk, while other chil­dren your age tore around us.

I do re­mem­ber cry­ing on a walk home from pri­mary school af­ter be­ing told that you needed glasses, be­cause I couldn’t stop think­ing, hasn’t he got enough to deal with al­ready? I do re­mem­ber ly­ing in bed, pray­ing to some­one who even then I didn’t be­lieve ex­isted that I might wake up the next morn­ing and find you mirac­u­lously “nor­mal”.

But the bril­liant truth is, you are blissfully and com­pletely un­aware of your dif­fer­ences. You live the naive and joy­ful life of a five-year- old in a 25-year-old’s body. You are in­ca­pable of mal­ice. You crave the praise of those you con­sider most im­por­tant – your mother, of course; me; your other sis­ters; and the amaz­ing peo­ple who guide you through your new in­de­pen­dent life in the com­mu­nity.

You take im­mense plea­sure from the sim­plest things.

A story told for the thou­sandth time by our snoozy fa­ther, your hero, on a Sun­day af­ter­noon. The sound of a for­eign emer­gency ve­hi­cle siren. Hav­ing the last sip of some­one else’s drink.

You have some ex­cep­tional gifts, as those with com­pa­ra­ble con­di­tions of­ten do. Play­ing “beat the in­tro”, you can name the song, seem­ingly be­fore the first note is played. You can re­call the names of staff from ho­tels we stayed in years ago, when the rest of us can’t even re­mem­ber the ho­tel. You can, ter­ri­fy­ingly, get through in­ter­na­tional air­port se­cu­rity with­out ei­ther pass­port or board­ing pass, only get­ting caught try­ing to en­ter a lounge.

I try not to mourn the life you haven’t had. It’s easy when I re­mem­ber that you live in a world with­out sad­ness, fear, guilt. It’s easy be­cause ev­ery­one who meets you falls in love with you – so I know that, wher­ever you are, some­one will be look­ing out for you. Even my one-year-old daugh­ter can’t take her eyes off you.

I could write for ever about the mo­ments with you that have changed us. You have made us kinder, softer and im­mea­sur­ably hap­pier – but you will never know it. Your sis­ter, Rachel

Newspapers in English

Newspapers from UK

© PressReader. All rights reserved.