Monday, 31 October 2011

How having a child with additional needs affects the family - a Special Saturday post

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 Cheeky.  He is perhaps more independent than he might otherwise have been and has a wonderful kindness and empathy about him.  But at what cost? 

Wednesday, 26 October 2011

What a difference a year makes.

A year ago today my wonderful little boy was christened. It was a beautiful, hot, sunny day. Family and close friends came to a lovely little service at the local church and then back to ours for a barbeque. Our garden looked great, courtesy of the flower filled hanging baskets my mum and I (ok mainly my mum) had prepared. A new ball pool and piles of toys kept all the kids entertained while bottles of champagne, jugs and jugs of Pimms and enough beer, wine and spirits to sink a ship, ensured the adults were kept happy too. The men, as always seems to be the case took charge of the barbeque, music blared out and there was a great party atmosphere. Everything you could possibly want to celebrate such a special day. And yet, I was filled with an overwhelming, indescribable sadness.

There's a photo from that day, my eyes fill with tears even thinking of it, of me in the church gazing down at the little fella in my arms. I don't know what other people see when they look at this photo. A proud mother and her son on his christening day? A beautiful boy in his christening outfit? A mother bursting with love? But I see such sadness. I see a son that doesn't recognise his own mother. I see the realisation that this isn't the child I expected and that something is very wrong. If I'm honest, I see something akin to grief in my eyes. It’s not a photo I look at often. 

That day surrounded by family and friends I began to mourn. The aching sadness inside juxtaposed with the laughter and frivolity. Half way through the day, I took my little boy from his party and put him to bed. And as I watched him sleeping in his cot, I wept.

My son barely looked at me, he didn't respond to the sound of my voice and apart from the fact that he sometimes calmed when I cuddled him, I suspected he genuinely didn't know, or care, who I was. His days and nights were spent sleeping, crying or vomiting and at five months old he was no closer to sitting, rolling or weaning, than a newborn. He showed no interest in his surroundings; people, noises, lights, toys, and it broke my heart that his older brother tried so hard to engage him, to make him smile and he rarely registered he was there.

And what difference does a year make?

It would be lovely to say that a year of appointments had brought us answers, that he'd made tremendous strides in his progress, that my heart no longer ached for the life I thought he'd/ we'd have...

 But I sit and write this by his hospital bed, his 17th hospital admission in nine months. I ponder the meaningless labels attached to him - extremely rare and complex chromosome abnormality, severe global developmental delay, microcephaly, hypotonia, severe visual impairment, severe and difficult to control life threatening epilepsy- and I wonder what the future holds for my beautiful baby. He makes eye contact more often and he smiles more but his progress is hindered by his epilepsy and recurrent illnesses and hospital stays. He first rolled from his back to his front at seven months. Ten months later he can occasionally still do this.

I love him dearly. With an overwhelming, all encompassing love I never imagined possible. I would walk bare foot to the ends of the earth to keep him happy, to keep him safe.

 And yet, my heart still aches. And I wonder, what difference does a year make?

Monday, 17 October 2011

Seeing my son through the eyes of others

For the first six months of my youngest son’s life, I knew deep down there was something not quite right.  Family and friends tried to tell me he’d catch up, I was imagining it, he was still so young.  But I knew.  I just knew.  I made a mental note of all the things that were different about him and tried not to feel so awful and guilty for looking for the things that were wrong rather than the things that were right.

And then our worst fears were confirmed.  An MRI showed his brain was underdeveloped and the long  journey towards a diagnosis began (we’ve not reached the end of that road yet).  But finally I could stop looking for all the things that were wrong.  I wasn’t imagining it.  Now I could appreciate my son for who he was. 

We developed a new sense of normal and although I’m aware he is severely developmental delayed – probably functioning at about that of a 3-4 month old though he is one and a half – most of the time I just don’t notice.  He’s my son.  My beautiful little angel.  He is who he is.  And I love him. 

But a certain times, I’m confronted with the reality of the situation.  It makes me sad to see him through the eyes of others.  When a parent of a similar aged/sized child asks if he’s talking and walking, when an old man waves and tries to make him smile and he doesn’t even register they’re there, when he is wheeled out of an ambulance hooked up to monitors and oxygen looking sick and vulnerable.  I don’t want people looking.  I don’t want people pitying him.  I know they’re not being unkind but I just hate to see him through their eyes.  The new special needs equipment has the same effect – electric powered seating system, standing frame, bath seat.  When I see him in these, it’s as if the blinkers have been taken off and I am confronted with the stark reality that my son is different.  And that makes me sad.

Sunday, 16 October 2011

An Act of Kindness – A Special Saturday Post

I am, by nature, a bit of a rambler so please bear with me.  It’s a bit of a long-winded story but I think you need a bit of background to understand why this single act of kindness was so important.

The little man has what they call ‘complex care needs’.  In a nutshell it basically means you can’t turn your back on him for a second.  He may be blue and lifeless on your return.  Sorry to be blunt, but that’s the way it is.  No, it’s not nice, but that’s our lives.  That’s what we live with and deal with every day.  Of course it affects us on a day to day basis.  The knowledge that any one of his ‘life threatening seizures’ could be fatal is terrifying.  I would love to say that I don’t let it control me, that I live as normal a life as possible, but the truth is I don’t.

Family weddings, trips to the park, visits to friends and family are all split – one parent leaves the house with the big fella and the other stays at home with the little fella.  Just in case!!!  Not the most normal of lives for the ‘big fella’ but he’s just two and a half and knows no different and we’re doing the best we can.

Last Christmas we were hoping to take the big fella (he was just about turning two) into Town to see the Christmas lights and meet Santa.  Santa, with his real reindeer and fake snow; the German Christmas market with its stalls selling Gluhwein (yay!) and hot dogs.  What Christmas is all about.  Unfortunately, and so typically of all of last winter, the little fella was ill and in hospital.  So the big fella missed out.  Again. 

This year, he is nearly 3.  This year he’ll understand more and appreciate more the joys and delights, the sights, sounds and smells of Christmas.  This year I am determined to get to Town to share it with him.  And I am determined to do this as a family.  I think his Mum, his Dad and his little brother should all be there to share it with him.  However, chances are the little fella will be too ill to make it.  Or it will be too risky to take him out so we need to find an alternative.  But that alternative shouldn’t be either his Mum or his Dad missing out on his first trip to meet Father Christmas. 

Now, strangely enough, babysitters trained in tube feeding, administering Buccal Midazolam, using a bag and mask, giving oxygen and doing basic life support tend to be few and far between!  The respite carer we’d been allocated was reluctant to be alone with the little fella – now considering he works with life threatened and life limited children, this was a bit of a blow to me.  I thought I’d be the one worrying, not him.  And the complex care nurses that we’re waiting for seems to be taking longer than expected, and even then they might not accept us.

So, back to the original point  - excuse the long and winding road to get there – all I really want for Christmas this year is to be able to take the big fella to see Father Christmas. 

On our last visit to the high dependency unit at the local hospital (we spend a LOT of time there), one of the nurses overheard my discussion with a friend about our predicament.  As we were discharged from the ward, she approached us and suggested that if we couldn’t organise for care for the little fella, we should get in touch with her at the hospital and she would babysit at our house while Mr M and I took the big fella to meet Santa!  On her week off!!!  Imagine!  I genuinely cried when she offered.  I hope we won’t need to take her offer and that the little fella will be well enough to come with us, but I know the offer is there and that she meant it.  So this year, come hell or high water, we’ll be visiting Father Christmas in town.  And thanks to a wonderful nurse on HDU for helping to make sure that will happen. 

Thursday, 13 October 2011

I know different ...

I found this beautiful poem on another page. Thought it was lovely and wanted t share it with you. Haven't managed to find the original anywhere but apparently it's by someone called Tricia Proefrock...


Dear Mommy, 

I have felt your tears, falling on my face. 
Someone else might think they are tears of sadness, because of what I can't do. 


I know those tears pour from your heart out of gratitude for me, because of what I CAN do: I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return. 
I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am. 

I have seen you hang your head down in shame, when we go out on adventures. 
Someone else might think you are ashamed of having a child like me. 


I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : ) 

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid. 


I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here. 

I know you have a big job, taking care of me. 
I know your body hurts, because I'm getting so big. 
I know that more than anything, you want to hear me say your name. 
And I know you worry that you aren't good enough, and that you will fail me. 

I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.