Dear Doctor

Dear Medical Professional, You will ask about his medical history, And I will repeat the story I have told 100 times or more, The details fine tuned to the essentials I know you need: He was born full term, He has a 7 year old brother who is fit and well, He is allergic to penicillin.  You will ask me what happened, And I will answer: He is 6 years old. He wasn't breathing for 7 minutes. I gave him mouth to mouth. I will hand over a careful typed piece of A4 paper. It will tell you his hospital number, The things he is allergic to, A list of medications and doses. You will take it and smile. You'll tell me I make your job easier. I will stand calm, And in control.  You see my demeanour, my hospital bags packed and ready, And you say, You've done this before. I'll nod and say many times. But remember this; That 6 year old is my baby. That boy with the oxygen, And the wires, And the tubes, Is my son. I watched him turn bl

Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.

My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous of friends who can play and fight with their brothers?  Will he resent missing out on days out and trips away because we are in hospital or because his brother is ill again?  Will he feel the same isolation from his friends that I feel now?  And sadly, the answer to all these questions is probably ‘yes, at times’.

But, Sean will also have an empathy and a kindness and an understanding that can not be taught.  He already plays gently with him, despite being a boisterous ‘rough and tumble’ kind of boy at heart.  He will stroke items along Little Hugh’s cheek or guide his hands to press buttons on toys.  He talks endlessly to him, showing him toys and pulling silly faces, despite rarely getting much response.  He delights in the smallest and simplest achievements; rolling over, making eye contact, all get cheers and claps and ‘well dones’!  “Look Mommy”, he’ll grin “He’s looking at me!”

And how that breaks my heart.  A two and a half year old, getting genuine delight from the briefest glimpses of eye contact from his own brother. 

Sean has started asking more questions recently.  ‘Will he walk when he’s bigger?’ ‘He can’t hear me, can he?’  Little things that signal a growing awareness that his brother is different.  And the games he plays aren’t the kind most boys his age play – he’ll be a nurse giving out oxygen, Fireman Sam and Elvis are on the way to the hospital, the teddy gets an NG tube.  I dread the day he plays these games at nursery, or worse – tries to do CPR on his friends.  Sean has often seen me resuscitate Hugh with a ‘special kiss’.  The poor child has seen things that no child, or indeed adult, should ever be subjected to. 

I sometimes feel family life for Sean is like being an only child without the benefit of having his parent’s undivided attention.  He has had to grow up too quickly and misses out on many things that other families take for granted.  Today for example, we are supposed to be at a Halloween party as a family, but Hugh had a pile of seizures so I’m home with him dressed as a spooky spider, while he sleeps off the Midazolam and Sean is at the party with his Dad.  We only managed one family day out all summer!  We’ve been forbidden by the consultant to go away anywhere as Hugh’s seizures are so uncontrolled, so we can’t even visit family members in Ireland!  Even a recent visit to the local children’s hospice fell through when we ended up resuscitating him at the side of the road.  Going out anywhere is a nightmare and so Sean doesn’t get to play in the park very often, he doesn’t even get to walk to the shops.  Family members and friends take him to the places he should be able to go with his Mum and his little brother.

So having a child with additional needs in the family has affected Sean.  He is perhaps more independent than he might otherwise have been and has a wonderful kindness and empathy about him.  But at what cost?