Friday, 9 December 2011

Que Sera Sera

I have been thinking about the future a lot lately and wondering what it may hold for us as a family.  I try not to look too far ahead and just concentrate on getting through the day, the next appointment, the winter ... but sometimes it is hard not to worry and the stark reality hits you in the face.

I took part in some research recently.  It was about support and services for the families of children with life limiting and life threatening conditions.  I tried to mentally prepare myself but it really opened up a whole can of worms, reminding me of memories I hadn’t even realised I’d suppressed and brought up feelings I’d not even admitted to myself.  Perhaps the most difficult question of all was the final one – “when you look in to the future, what do you see/ what do you want? 

What do I want for the future?   First and foremost, I want there to BE a future!  For us.  For all four of us as a family.  I want Little H there, smiling and happy. 

And if the worst happens?  I want to be able to look back over his life and know I did the best for him.  That I made his life happy and complete, that he knew he was loved.

And I want him to see the sea.

Many of you know how scared I have been to leave the house with Little H.  It is not an irrational fear either.  Having resuscitated him twice now at the side of the road, I am terrified that his last moments should be spent lying in the cold and wet.  There is never going to be a good time, but cars rushing past while I kneel in the mud trying to get him to breathe surely has to be one of the worst. 

But I am also terrified that my fear will prevent him living as full a life as he could.  That he is missing out on experiences that would make him happy because I am too scared to take him out.  I am slowly starting to take more calculated risks – “he is happy and well today, so less likely to have a seizure, we’ll take a short drive out.”  And so far it has paid off.  I am terrified though that one of these days I will make the wrong decision.

On a recent trip out we made it to our local children’s hospice.  And here again I was confronted with the stark reality of the path that potentially lay ahead.  On the one hand, I met some severely disabled children; it scared me to think that one day Little H will be that size and need that level of care and support.  He isn’t two yet – just a baby so it doesn’t seem such a big deal.  But when he is a teenager, people will see him as severely disabled.  They won’t see my little boy, my beautiful smiley H, they’ll see a man unable to sit, walk, talk, eat, use the toilet, to attend to any of his own basic care needs.  They will see a severely disabled young man.  They will see, I am ashamed to admit, what I saw when I looked at the others in the hospice. 

And that is his best possible future.

His worst? Our worst?  Walking through the memorial gardens in the grounds of the hospice, seeing all the pebbles in the stream etched with children’s names, the benches with plaques and the birthday balloons tied to the railings, deflating.  Imagine seeing my little baby’s name here?

The alternative is much worse.  The alternative is terrifying.  I can not bear to imagine it.

I have a friend whose child died at 11 months old.  Another friend whose baby was stillborn at 40 weeks, just days before his due date.  And my sister died at just two months old.  Their mothers, my own mother, would give anything to have just one more day, just one more hour, to hold, to love their child, regardless of how disabled they were, regardless of what the future held, regardless of how much time they had left together.

When I feel sad and scared about our future, Little H’s future, I try to remember that.  He is mine, he is here and I love him.  Surely that is all that matters?

Saturday, 26 November 2011

Communication: A Special Saturday Post

Prior to having little H, I taught children with autism for many years, some severely autistic, non-verbal children amongst them.  I have been asked countless times “Will he ever speak?” and whilst no-one can know for sure, with each passing year the chances decrease, though I have known a child who spoke his first words at the age of 11.  I learnt that there is so much more to communication than words, it is a highly complex process.  One child I taught had a vast vocabulary, yet had no idea what the words meant.  He was echolalic, simply repeating phrases he had learnt.  Whilst many times he used words appropriately – “Good morning” for example, it was impossible to have a conversation with him.  He simply didn’t understand.  He was no more able to communicate than a non-verbal child despite appearing to be at an advantage.  Words to him were sounds and held no communicative intent. 

There are so many stages that a typically developing child goes through before they use words effectively to communicate.  First they must realise they need to communicate, that people don’t automatically know their thoughts - I taught many very able, verbal children with autism who still struggled with this concept.  Young babies communicate initially through crying to express hunger, tiredness and discomfort and mothers can often differentiate between the different types of cry and work out what their child needs.  This communication quickly progresses, and even whilst still very young, babies begin to learn the subtleties of turn taking in conversation and will babble in response to a parent, beginning even to use some intonation in their sounds.  Eye contact is also a key feature in communication, verbal or otherwise. 

There are many forms of non-verbal communication; eye gazing, that is looking towards a desired item, pointing, taking a parent to an item or placing it in their hands – with for example something that needs to be opened – are all effective ways of communicating desires without speech.  Then there are the more obvious, recognised methods of non verbal communication, such as PECS, Sign language and Makaton. 

There are so many methods of communicating, that I often thought parents placed too much emphasis on verbal communication and speech.  Yet now as a parent I know how desperately you want to hear your child say “Mum”.

As a parent I have heard myself ask “Will he ever speak?” and been devastated by the response.

I cling to the hope that Little H will one day learn, but in the meantime we support his communication in other ways.  His vision is poor so Makaton or other basic sign language isn’t really appropriate.  Even if it were, he has very little controlled movements so would be unable to use the signs himself.  His elder brother, Cheeky (now nearly 3) used baby signing when he was younger.  I’d like to clarify, I’m not a ‘hippy Mum’ or anything, but he was having such terrible tantrums – I mean, banging his head on the floor in frustration kind of tantrums – because I couldn’t understand what he wanted that it seemed only fair to give him some tool of communication before his speech developed.  It worked amazingly well and I was interested to see that even when he began speaking at around 13 months, that he would revert to signs when tired or anxious, once repeatedly using the sign for ‘finished’ when he was scared on a boat trip, despite being well able to talk at this stage.  It is sad then, at nearly two years old, his younger brother is nowhere near achieving the level of communication that Cheeky had at 9 months.  Instead, we use something called ‘on-body signing’.  It’s a signing system for children with visual impairment and moderate to severe developmental delay.  They can feel the sign as they are said, so are not relying heavily on vision as with other signing methods.  It’s quite simple – the sign for hello is shaking his hand, goodnight is tracing your fingers down his face – as if encouraging him to shut his eyes.  We also use objects of reference – everyday items that he can hold, and hopefully see, that indicate what will happen next: a nappy when I’m changing his bum, a wet flannel at bath time, keys when we are going out.  I also try and use song to indicate time of day as he loves music.  We have a ‘Good Morning’ song Cheeky and I sing each day when it is time to get up and I use the same lullaby each night at bed time.  I am not sure how much of these cues Little H is aware of or picking up on but hopefully with time he will begin to recognise the pattern.

And how does Little H communicate with us?  Well, bless him, he has THE most wonderful smile which indicates he is happy, and a right cheeky chuckle that makes us all laugh too.  When in pain or discomfort he cries and when hungry he has this funny little tongue roll thing but I think that might be involuntary.  It is a shame that he is currently being NG tube fed as his most effective and intentional communication so far has always been when eating.  He very definitely will turn his head away and push his tongue out if he doesn’t want something – as if to say “There is no way you are putting THAT in my mouth Mum!”  He also makes a funny shouty noise if I’m not feeding him fast enough as if to say “Come on Mum, I’m starving!”  It’s hilarious because it’s a really cross sounding shout too.  It’s a shame that nothing else so far has elicited the same level of intentional communication but hopefully after the winter, if his health starts to pick up and we manage longer than a week between chest infections then we might be able to start feeding orally again.  At least I know though that he has the capacity for intentionally communication though and that is a start.

And maybe, just maybe, one day he’ll be able to look me in the eye and say “I love you Mum” but until then, we’ll keep working on the other methods.

Friday, 18 November 2011

Reasons to be cheerful ... 1, 2, 3 ... A Special Saturday Post

This week’s theme for special Saturday is things we are grateful for.  I think it does us all good to every once in a while to consider the positives in our life.  So, in a break from my usual tales of woe and melancholy, I’m attempting a more upbeat post, reflecting on the things in my life that make me happy.

1.     I am truly blessed to have two beautiful, wonderful sons.  Especially considering it was only four years ago I was told I would be unlikely to ever have any children and then told to make the most of my first pregnancy because it was the only one I’d ever had.  Honestly! 
2.    I have a fantastic husband who loves me and I him.  We have been through thick and thin together – the illness and deaths of one parent each, seriously ill siblings, infertility and the subsequent gruelling tests and treatments, the endless tests and investigations we’ve been through with Little H, little H’s diagnosis (or the lack thereof) and the fear and devastation caused by his epilepsy – and yet we can still smile and laugh together.  We don’t get to go out together any more (who on earth would look after Little H for us?) but we are closer than I ever thought possible, bonded by the shared love of our two beautiful boys.
3.    ‘Cheeky’ is an amazing child!  I doubt a better big brother for Little H could be found.  With only 14 months between them, things could be so much more difficult if he was any other way.  But he is compassionate, caring and considerate.  Not the typical traits of a ‘terrible two’ year old.  He adapts easily to the changes forced upon him – the sudden ‘sleepovers’ at Granny’s when we’re in hospital again, the cancellation of plans because Little H is too sick to leave the house again.  He never makes a fuss.  He just accepts that this is the way it is and gets on with.  I thank my lucky stars for him.  Cheeky is a miracle – the child I was never supposed to have.  Fertility treatment had been stopped because I wasn’t responding.  Scans showed nothing was happening and I was booked in for invasive surgery and further investigations.  After my pre-op, when I’d booked the time off work and geared myself up for the operation, just days before I was admitted to hospital, I took a pregnancy test ‘just in case’.  It was positive and it turned out I was already 8 weeks pregnant!  I still can’t explain it, I’d been having scans!  But he arrived at such a crucial time in my life – my father was dying of lung cancer and this unexpected baby brought a ray of hope to an otherwise very difficult time in all our lives.  Cheeky kept me going after my dad, his namesake, died just four weeks after his birth.  He was a reason to get up in the morning.  Through the dark and difficult times with Little H, Cheeky has remained my shining light.
4.    I am grateful that Little H came to our family.  When I think of all the other families in the world he might have gone to, I realise how different things could have been.  There are so many horror stories in the news about children abused and neglected by their parents.  I dread to think what would have happened had Little H gone to a family like that.  I doubt he would be here now.  I know our vigilance and persistence has kept him alive.  I know there are occasions when we have saved his life.  I thank God then, that he came to us and not to someone who couldn’t give him the level of care he needs and deserves.
5.    Following on from that, I am glad that my past experiences have helped me be a better mother to Little H.  I have worked as a therapist for children with Autism, supported families of children with special needs, and been a teacher in an autistic specific special school, all prior to having children.  The knowledge and skills I gained in these roles has helped to ensure I can access all the support Little H needs.
6.    I am also grateful that, although it is difficult, I have been able to give up work to care for Little H at home.  I genuinely don’t know what I would have done had that not been possible.  I can not think of any appropriate childcare that could provide for him and I doubt I would have been able to do a day’s work anyway for worrying about him.  I don’t doubt I would have had a nervous breakdown from the stress of it all.
7.    I have a great family support network.  My mother, father in law, brothers and extended family all do whatever they can to support us.  In particular they all do their best to ensure that Cheeky doesn’t miss out because his brother is ill.
8.    And last (but not least) I am eternally grateful for the wonderful friends I have met through facebook and twitter.  They have provided immeasurable support and understanding through some very difficult times and have shared and delighted in the successes and achievements along the way.

Sunday, 13 November 2011

Six months on from an epilepsy diagnosis

Last night, a nurse in the high dependency ward told me I had changed so much in six months. Have I? I thought back. Just six months ago we didn't know the reason why our son stopped breathing and went blue once a week. Six months ago, four EEGs had come back normal and we had taken to videoing these ALTEs (apparent life threatening event) as the staff in A&E referred to them, in desperation that someone would know what they were and what to do. Six months ago we hadn't had the diagnosis that would change our lives.  

Prior to diagnosis we had first been told 'it's nothing to worry about it'll never happen again' (the first time he stopped breathing), 'it's because he is unwell, he will grow out of it', 'it's a breath holding attack' and 'the strongest human urge is to breathe-he'll be fine'. After weeks of it happening time and time again, we were told that they didn't know what was happening and because of his complex needs there was a strong possibility he wouldn't start breathing of his own accord. We were trained in basic life support and we tried to carry on living our lives. 

We even went on holiday. God if we realised then what we know now we would never have taken that risk. We were visiting family in Ireland, who live out in the middle of nowhere. It's an hour to the nearest city and in turn the nearest hospital. As luck would have it, on the day he had what has been his worst seizure to date, we were visiting relatives who lived next door to a paramedic! Seven minutes in he finally started breathing again. Seven minutes might not sound long but it was an eternity. You can not begin to imagine the shade of blue he had turned in that time. The 20 minute ambulance ride, with blue lights and sirens, which followed also seemed to be an eternity, but nothing in comparison to the 45 minute car journey my husband had to make not knowing whether his son would be dead or alive when he finally reached the hospital. We vowed never again to be more than the 10 minutes away from a hospital that we are used to. And months later, after diagnosis, our paediatrician confirmed that it simply wasn't safe for us to go anywhere that was any distance from a hospital. We have not attempted to leave the city since!

When the diagnosis of epilepsy finally came, I expected to feel relieved. A name. A reason. A known enemy. And more importantly, something that could be treated. But in reality I was scared. If it was epilepsy then it meant it would keep happening again, at least until we'd got it under control with medication that is. Little did I know how devastating epilepsy could be. Little did I know that I was nowhere near scared enough!

It's not like on the telly you know? Its not all flashing lights and convulsions. My son simply stops breathing. No twitching, no jerking. Nothing. The only other outward sign is that his pupils dilate. And of course that he turns white, then grey, then blue, then navy blue and sometimes purple. Not just a blueish tinge around the lips, his whole face and body. We have since discovered he desaturates very quickly. For those not familiar with the ridiculous amount of medical jargon that is now part of my everyday language, this means that he has little or no oxygen in his blood. This lack of oxygen quickly prevents his heart from working properly and it starts to slow down. He basically begins to go in to cardiac arrest. I genuinely never realised epilepsy could be life threatening. I doubt I would have wished so hard for a diagnosis if I had realised just how dangerous it can be. 

Of course, treatment is an option. Initially we were given a 50% chance that his seizures could be controlled by medication. Not the best odds I thought but a friend pointed out that before diagnosis I would've jumped at a 1 in 2 chance that he would never stop breathing again. So I perked up a bit. But this wasn't what I'd expected. I thought you could take medicine each day and that would be that. Sure, maybe a couple of attempts to find the right medicine or combination of medicines but not this; powerful drug after powerful drug being gradually introduced with sometimes devastating side effects, then slowly weaned back off them whilst gradually introducing a second. Each time losing your son for days, sometimes weeks, at a time to a drug induced haze while his brain and body adjusted to the powerful anti-epileptics, at one point, the effects of which were so severe that he lay completely lifeless in the high dependency ward for two weeks, hooked up to oxygen and tube fed. It took him a further month or more before he could hold his head up again. He is still being tube fed after not regaining the ability to swallow safely. And after all that taking its toll on his tiny body, we reach the label: 'medically intractable' –that’s epilepsy that is unlikely to ever be controlled successfully by medication. So that's where we are at now- 'the drugs don't work' as they say and we're waiting to start a trial on a ketogenic diet that may (or may not) help to control his seizures.

It is hard to believe that has all happened in six months. That six months ago I didn't have this horrendous diagnosis of 'life threatened' hanging around my head, making me scared to leave the house. six months ago I didn't have to cart oxygen and a bag and mask and midazolam with me everywhere I went and my house didn't resemble a hospital ward with sats monitors and oxygen tanks and syringes and tube feeds. Six months ago I hadn't had to resuscitate my son at the side of a dual carriageway while cars drove past or bag and mask him at a friend's house after dinner. Six months ago I hadn't received booklets from well meaning nurses detailing how I could plan for his funeral. 

So yes, I imagine I have changed a lot in the last six months, but really, is it any wonder?

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.


Saturday, 24 September 2011

A Special Memory

I thought for a while what my ‘special memory’ for this week’s special Saturday would be.  I have lots and lots of memories, some wonderful, some sad, some poignant.  I thought of how I held my beautiful newborn baby in my arms or the joy, tinged with fear I felt when we took him home from the neo-natal unit.  But these, and other early memories, were before we knew that he was different from other children, that his future wouldn’t be quite the one we envisaged for him.  In the end I settled on a beautiful memory that is all the more special because of that difference. 

Many parents recall their babies’ first smile.  Often it is before they reach six weeks, so they can pass that first all-important six week check at the doctors.  My little fella ‘failed’ that first test and was rescheduled for another check up two weeks later.  By this time, I had convinced myself he had smiled at me, though I suspected it was wind, I desperately wanted it to be a smile and so told the doctor he had.  In actual fact he ‘smiled’ for the first time around the nine week mark.  But in all honesty, he wasn’t a particularly smiley baby; reflux left him in a lot of pain and if he wasn’t crying, he was sleeping.  On those occasions when he did smile, they never appeared to be appropriate or in response to anything – they’d be aimed above our heads, to the corner of the room, at thin air ... anywhere but at us.  Eye contact was fleeting at best.  We later discovered he was visually impaired.  Whilst his eyes themselves were fine, the brain couldn’t make sense of the images it was receiving.  Effectively, we were told, that left him blind.  We were devastated.  There was however, room for improvement, as he grew older and his brain developed, it was hoped that his brain might start to process the images and he might begin to ‘see’.  He didn’t respond to sounds appropriately for the same reason.  His brain couldn’t make sense of the noises.  Whilst he could hear and startled at loud, sudden noises, sounds like our voices, toys and music held no interest for him.  He wouldn’t turn to the source of the sound and these too failed to raise a smile.

I remember sitting one evening in the living room.  It was early winter and the curtains were drawn.  I had the little man on my lap.  I was talking to him in that sing song voice people always reserve for babies and jigging him up and down.  And suddenly, out of the blue, he smiled.  But the difference, oh the beautiful, wonderful difference was the way his whole face lit up.  His previous ‘smiles’ paled into insignificance in comparison.  They were nothing but meaningless, automatic contractions of facial muscles.  This though was different.  This smile filled his face, creasing right up to his eyes, which sparkled in delight.  He looked at me, I mean really really looked at me.  And it melted my heart.  It was a warm hug that reached right into my very soul and in those few precious seconds he seemed to say ‘I know you – you’re my mum, and I love you’.  I cried then, as I am now writing this, at the wonder of that tiny miraculous expression of happiness.

My son was 9 months old when he first smiled and it is a very very special memory.

This post was written as part of the Special Saturday campaign to raise awareness of additional needs, 
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Sunday, 11 September 2011

Special Saturday: How my child has changed me

If you had told me 18 months ago that I would give up a job I loved to be a full time carer for my son, I would doubt you were telling the truth.  Now I 'earn' Carers allowance each month and know that leaving work is the best decision I ever made.

If you had said to me 18 months ago that I would become a dab hand at tube feeding, I would never have believed you.  Now I can do it with my eyes closed.

If you had told me 18 months ago that I would have the strength and courage and determination to challenge the opinion of Doctors and Paediatricians, I would have thought you had got me mixed up with someone else.  Now I trust my instincts and know that whilst I may not be a medical professional, I AM an EXPERT in my son's needs.

If you had told my 18 months ago that I would make new friends with total strangers through the internet, I'd have been insulted.  I've enough friends already - surely only loners and losers make 'cyber friends'?  Now I have a near army of 'special needs mum's' through Swan and Unique and facebook and twitter, who I can call upon, any time, day or night, who understand my worries and fears; who can answer the silly questions; put my mind at rest and really rejoice in the small steps and achievements along the way.  

If you had told me 18 months ago that I would regularly perform basic life support on my own child, I would have gasped in horror!  Surely no-one could do that?  And here I am, 18 months later, regularly resuscitating my son.

18 months ago, I could never have imagined the life I lead now.  To feel so vulnerable and yet to appear so strong.  To feel such love and to simultaneously feel such fear.  To plan so far ahead and yet live day to day.   To feel at times happier than I have ever felt and yet also so very very sad.  To use words like life limiting and life threatening and hospice in day to day conversations and yet still feel truly blessed. 

My wonderful, beautiful, special son has brought such joy into my life and in just 18 months has taught me so much.  He has changed me in a way I would never have thought possible and at times I don't recognise myself.