Well so much for giving up work and becoming a prolific writer!   It's a bit pitiful managing only one post since finishing isn't it?   No excuses, no work, nothing to do but enjoy the children, potter round the house, pamper myself and in a whole six months I manage only one.   Terrible isn't it?   Ask me if I'm bothered?

Nothing seems quite so pressing anymore.  I'm very, VERY chilled.   So what have I been doing?  I wish I could say I'd been busy turning into Mother Earth, nurturing Caitlin, Claudia and Charlie into model children and they'd remarkably responded in kind by suddenly reaching milestones previously thought impossible...In reality however, we've all just happily plodded on.   The main difference there being the word 'happily' because 99% of the time now that's exactly what I feel and I suppose the children have picked on that and so that's what we all seem to be!

The house hasn't turned into some domestic goddesses' den of bliss, Dinner hasn't turned into something Nigella Lawson would be proud of (most of the time), I haven't turned into  some kind of Mary Poppins muffin-baking, super-mum (although we have done a little more baking!)  It's just occasionally things are tidier, occasionally there's more time for fun stuff, usually there's time for us to all eat together, often we're still all on the last minute but that's just us!  I 've also lost a lot of weight and that always makes me happy!  There's definitely a lot less stress and a lot more smiles.  You notice the fact that there's lots more laughter.  You'd be amazed how little you notice there's less in the bank!

Charlie is as lazy as ever!   He is showing some grand improvements however.  Whilst stubbornly refusing to talk at all, he is now much more mobile.  He can now climb two or three stairs and negotiate the furniture pretty well - no obstacle too big!  I swear the child could fall asleep on a washing line and often falls asleep stood against furniture.   He still can't stand independently, so obviously walking is a way off yet.  But he will now tolerate longer spells in his standing frame.

He has been a little poorly recently.  He suffers with a lot of respiratory tract infections.  Any sign of a cold and it goes straight to his chest.  The last infection seemed to settle there and he developed croup - again!   This time an amazing temper came with it!   He hardly ate at all for almost a week and became irrate at my best efforts to feed him.   It came as quite a surprise to me to see such violence and angst from my lovely placid quiet boy.   Insead of the coy smiles and cheeky chuckles, I was being cuffed round the back of the head, having handfuls of hair yanked out and when I least suspected it and leaned in to steal a kiss, my little ray of sunshine would suddenly gouge a chunk of skin from my cheek and scream at me.   I was in no doubt I was unpopular!   To be shamefully honest, as sorry as I felt for the litle guy, with his crusty green nose, doggy breath, rattling chest and foul temper, for a whole two days he was ever-so-slightly less appealling and on one occasion I think I was even overheard muttering 'bugger off then' under my breath as yet another bottle of milk was rejected and narrowly missed my head as it was launched missile-like across the room.   Fortunately,  my little angel, all smiles and even temper is back and not a minute too soon!   Now we can all go back too enjoying our leisurely lives over the half term!

Ok!  Here are the answers to the top three questions I've been asked these past two weeks:

1) Fantastic!

2) Nothing!

3) Guilty pleasures like shopping on my own, watching House and walking on the beach with Charlie!

The Summer passed in a flash and despite the gloomy weather was memorable for  being the most relaxed summer break I can ever remember having - no doubt because at the end of the summer break I was looking forward to more break!  Paul took a couple of weeks off and the relentless rain gave us an excuse to just chill out and enjoy the Olympics- Wow! There was quite a lot to enjoy there!   Chris Hoy had me on the edge of my seat a few times - not that he ever really looked like losing!  But he and his team-mates certainly made the velodrome worth watching.  Then all the pool-side action with Rebecca Adlington, and the Rowers!  Wow!  I can't remember enjoying the Olympics so much ever before!

The Paralympics have barely started and we already have an impressive haul of medals.  Day One brought similar success in the velodrome to that of recent weeks with gold medals and world records for Simon Richardson, Aileen McGlynn and Danny Kenny.  At the pool, Sascha Kindred sliced 50 seconds off his own world record to take gold in the 200m IM.  Jim Anderson took silver in the 200m free-style amd both Natalie Jones and Matt Walker achieved bronze in their 200m medleys.

Day Two brought even bigger shocks with Eleanor Simmonds making history as Britain's youngest ever individual Paralympic Champion, winning gold in the 100m freestyle (S6).   David Roberts took gold in the 100m freestyle for the third time.   Chris Martin (The athlete not the singer) won silver in the discus, while local girl, Shelley Woods won silver in the T54 5000m.   Anthony Kappes got another gold and another world record at the velodrome, bringing team GB's medal tally so far to seven gold, 4 silvers and 3 bronzes.  Not bad for a couple of days work eh?   I can see myself kicking back, chillin out and spending a few more days admiring these athletes before they inspire me into shaping up myself.  I can feel a get fit kick coming on!

We haven't picked Charlie's event for 2020 yet!  He'd win gold for smiling but I can't see them making that an olympic event!  His general laziness isn't quite in keeping with the Olympic spirit but he'd have to be inspired by the clip below. I think this could quite possibly be the best advertisement ever!

http://www.charliebrewersworld.com/USERIMAGES/video_different.wmv

ROADMAP TO HOLLAND

By Jennifer Graf Groneberg

Ok, I've been meaning to write about this book for such a long time, but I've been so busy and it deserves my full attention. 

Road Map to Holland is an emotional journey no map could hope to navigate.   It's honest, raw, moving, informative and inspiring.   I could go on ... in fact I'm going to!

I believe this is a 'healing' read, which is a strange claim, but I genuinely felt better after reading it.   It's deeply comforting to read the thoughts of someone grappling with the same problems, joys, emotional highs and lows and prejudices that you are.   Especially when they are a little further down the road and their message is ultimately, one of hope.

I cried reading Jennifer's book, but I also laughed.   There were times when I could have been reading my own diary because the experiences as well as the emotions and sentiments were so close to those I've experienced with Charlie and the girls.  Other episodes were completely removed from my experience, fresh and contrasting to anything I've felt and all the more informative for that.

The ultimate 'goosebumps' moment for me came at the end of chapter ten - 'Alphabet Soup'.   Jennifer's son, Avery had been undergoing developmental checks and scoring erratically.   Not only have I 'been there', but with three different children and Jennifer's reaction to the inadequacy of quantifying children like ours articulated perfectly feelings I've had on being presented with the findings of similar tests.

'I think about what our family doctor said, when I was so proud of Avery's rolling.   I wonder if he is right - Avery will inevitably fall behind, and break my heart, again and again and again.   It doesn't feel true.   Even though Avery has done well on this particular part of the test, I can see that it's not a true measure of him.  The papers and their letters and the yes-or-no answers aren't the whole story.   They don't capture Avery's gentle, easy-going nature.   They don't mention how he sucks his foot.   There's no place to check off how he open and closes his fist, which Tom calls "the sound of one hand clapping."   The way his chin quivers when he cries; the stars in his eyes.   The most important things don't fit on any form; they are not quantifiable, or able to be gauged.   But they count - they are the measure of love.'

To say anymore may be to spoil the read for someone else so I'll simply say please read it!   At times it felt like opening a healing wound, but it was certainly cathartic and I found myself thinking about Jennifer's words long after I'd finished reading them.

Onto the second thing.   For anyone who didn't know, I finally bit the bullet and resigned!   By the end of this school year, or to be precise (not that I'm counting the days!), July 23rd, I will be a full-time mum!   Poorer but happier I suspect.

The anticipation of having the luxury of time for the children, Paul and myself is exhilerating.   I've been asked by one or two people if it will be enough for me.   It's all I can do not to burst out laughing.   Those of you with one child like Charlie will know how much care attention and time it takes to love them.  Not effort obviously, loving them is effortless but all the same, time-consuming and relentless.  

So will spending my time looking after and loving all three be enough? -  It's too much!   It's always been too much!   Too much worry, too many tears, too much pain, too much laughter, too much excitement, too much love.   Too much to fit into any life, even if it is the life of an unemployed lady!

I don't see myself sitting twiddling my thumbs and wishing life was more meaningful.   I know I still won't have time to cram everything in but at least I will have removed the less important distractions.

I'm finally practising what I preach - realising what's really important and embracing it!   And if I wasn't me, I'd be really jealous!

Caitlin

(While watching the opening sequence to Disney's "Finding Nemo" for the zillionth time)

Caitlin:   Mummy! Oh no! The naughty fish is here!

Mummy:   Oh dear!

Caitlin:   Oh no!   He hurt Marlin!

Mummy:   He's very naughty!

Caitlin:   Oh no!   Where's Coral gone?

Mummy:   Where has she gone?

Caitlin:   She's dead - the naughty fish ate her!

Mummy:   Oh! Poor Coral.

Caitlin:   Oh no!   Nemo's brothers and sisters have gone!

Mummy:   Where have they gone?

Caitlin:   The naughty fish ate them!

Mummy:   Well that is terrible!

Caitlin:   Oh no, it's not terrible.   I think Nemo's brothers and sisters were probably delicious!

Claudia

(Post-seizure, just before falling asleep)

Mummy:   Are you ok sweetheart?

Claudia:   (with drunken grin spreading over face)   We need white paint and brown paint for the nice toast colour.  Now mix together to paint your toast.

Mummy:   Well that's very interesting!  Do you still feel sick?

Claudia:   Yes I do feel sick! ( Still smiling broadly)   Don't put pasta on the bottom of the robot - that's where the legs are going to go!

Mummy:   Ok!   Love you, my Claudia.

Claudia:   Love you, my mummy.  Love you Mr Maker.

Charlie

(In giddy mood, mid-afternoon, after lots of songs and finger-rhymes.)

Charlie:    Non.....non...non...non...non.

Mummy:   Non...non...non...non....can you say mama? Mama....mama..

Charlie:   Non...non...eeeeeeeeeeaaaaaaaaaaaah...ma...ma...ma...ma.

Mummy:   Good boy!    Mama.......mama.

Charlie:   (Huge grin) Mama....mama...eeeeeeeeaaaaaarrrrgghhhh.(Descends into excited scream.)

Mummy:   Mama...mama...eeeeeeaaaarrgh. ( half-hearted attempt at less blood-curdling scream)   Can you say dada?  Dada...dada.

Charlie:   Non....non...non...non...

Mummy:   Oh we're back to non...non...non are we?

Charlie:   (Loud, prolonged raspberry noise...........very pleased with himself!)

Caitlin:  Oh no Mummy!   Charlie made a rude noise!

Paul

(Whilst watching Everton V. Arsenal and simultaneously finishing a late dinner which was an 'experimental' recipe.)

Paul:   Mmm....lovely!

Sally:   Was there enough stilton in the sauce?

Paul:   er......I.......er... (trails off)

Sally:   I was bothered that I'd overpower it if I put more in but it doesn't seem to taste as strong as it smells.

Paul:   mmm......

Sally:   Are you listening?

Paul:   Just a min....(Very distracted by an injured player on telly who appears to be getting smelling salts).....Urgh!

Sally:   What's up with him?

Paul:   He...............erm...........(trails off)

Sally:   Deaf and daft as well?

Paul:   erm..........yeah........(trails off)

So in general, you're probably gathering that although not always using the Queen's English, (or the Queen's logic for that matter), most of my dependents are becoming increasingly vocal.   The improvement is in the amount they're saying, but also in terms of their extending vocabulary.

Caitlin, despite her fondness for fish suppers and lack of empathy with those lovable Disney characters, has become very animated, very chatty and to be honest, very humorous.

Claudia, although still very much regurgitating learned phrases, is becoming more audible and intelligible.   The phrases are getting much longer and are often (though not in the above example), in context.

Charlie is far more animated in responding to speech and babble.   He's making a greater variety of sounds and often attempts to echo sounds made to him.   He's also clearly understanding far more spoken language and is beginning to use several signs reliably.

All doing well then!

All except Paul!   I'm going to have to work a bit harder on that one!  The language skills aren't really coming on.  It's either what his dad lovingly refers to as 'round the houses', repetition, or as he sounds in the above example, and let's face it...you can only hit neanderthal if you regress anywhere from there.

I'll keep trying!

<a href="http://www.onetruemedia.com/shared?p=58f24f962e953d100019a0&skin_id=1803&utm_source=otm&utm_medium=image" target="_blank"><img src="http://www.onetruemedia.com/cover_thumbnail?p=58f24f962e953d100019a0&view=2" border="0" alt="View this montage created at One True Media" title="View this montage created at One True Media"><br/>Our Prayer</a>

Well poor Charlie's having a bit of a rough time.   Since starting his nursery placement the first week in January, I think he's made about three sessions the ret of the time he's been poorly and spent all of last weekend in hospital.

Any time he gets a cold, it just seems to go straight to his chest and knock him for six!   Anyway as seems the norm for hospital admissions at the Vic, he went in with respiratory difficulties and in addition to the steroids, antibiotics and nebulisers, he also left with chronic diarrhoea and an incredibly sore bottom!

     Can't believe it but tomorrow Charlie starts school.  Yes he's   only two!   He's going to have a couple of sessions in the nursery at the Special school the girls attend.   I think it will do him the world of good because he is a very lazy boy and I think we're all far too soft with him!

I will probably get upset but I can't put my finger on why - I trust the school and it's marvellous staff implicitly but it's hard to let him go.   I think he's always going to be my baby!

It's been quite a while since I posted and there's probably only one genuine reason why.   I received some unexpected and some very unwanted feedback; Some individuals felt the need to tell me  how unappealling and to use their words 'disgusting' and 'ugly' they found Charlie.   After my initial shock, I started to question myself.   Why should everyone agree with me?   Why should I expect others to share my opinion on how fantastic Charlie, Claudia and Caitlin are?   However I've come to realise, I'm not the one with the problem.   It's not a crime to be proud of a family others would consider less than perfect!   The authors of the comments aren't really worth the effort of responding to, so I won't.   But it's taken me some time to draft the following because I wanted it to reflect both sides of the coin.

It's true not everything about disability is joyous - We've had our fair share of difficult moments.   The most difficult of which was the original diagnosis and acceptance of the fact that our much anticipated and beloved son had Trisomy 21 - Down Syndrome.

Trisomy 21 is a little something extra.   An extra 21st chromosome to be exact.   When we first learned that Down Syndrome was caused by the duplication of the 21st chromosome, Paul was amazed that having that little 'something extra' could have such wide-reaching consequences

"Wouldn't you think it would mean you had an advantage if you had something more than most people?'

It takes a while to realise that that's exactly what it does mean.   Charlie does have an advantage.   It's hidden somewhere his soulful eyes and his gleeful smile.   He has the ability to evoke real happiness in people without even trying and that's a gift most people don't have.

In honour of Down Syndrome Awareness Day in the States, I noticed on several of the blogs I read the mums had listed 21 facts about their wonderful children.   I loved this idea but to be honest, if I were to list 21 things about Charlie, they would be so similar to the ones I'd read that it would be more efficient to simply cut and paste - How creative would that be?   Charlie deserves more - more than the clumsy way I might try to capture the wonderful things about him and how he makes me feel.   So I thought if I'm going to pinch sentiments, I might as well pinch poetic ones.  To that end, here are 21 lyrics from a diverse selection of songs. Each one descibes an aspect of Charlie or his life with us more perfectly than I ever could:

"Sometimes the very thing you're looking for is the one thing you can't see!"

Vanessa Williams

"I said I love you, that's forever

This I promise from the heart.

I couldn't love you any better

I love you just the way you are."

Billy Joel

"True Perfection has to be imperfect."

Oasis

"My heart is drenched in wine,

You'll be on my mind, forever."

Norah Jones

"Magic is there when you smile."

Rosie Vela

" If only tears were laughter, If only night was day,

If only prayers were answered, then we would heal God save."

Boyzone

"For one so small, you seem so strong,

My arms will hold keep you safe and warm,

This bond between us can't be broken

I will be here, don't you cry

You'll be in my heart. Yes you'll be in my heart,

From this day on now and forever more.

You'll be in my heart, no matter what they say,

You'll be here in my heart...always!

Phil Collins

"I'm loving angels instead."

Robbie Williams

"I hear babies cry, I watch them grow

They'll learn much more than I'll ever know

and I think to myself - What a wonderful world!"

Louis Armstrong

"So don't mind if I fall apart

There's more room in a broken heart

and I believe in love - what else can I do?

I'm so in love with you."

Carly Simon

"I don't quite know, how to say how I feel.

Those three words, are said too much, they're not enough.

...all that I am, all that I ever was,

Is here in your perfect eyes, they're all I can see."

Snow Patrol

"Brothers and sisters, when they insist we're just not good enough,

Well we know better, just look them in the eyes and say,

'We're gonna do it anyway!'"

Labi Siffre

"See to them it didn't matter why some things in life took place,

They only knew the joy they felt when they looked into his face.

Sometimes miracles hide.   God has wrapped our blessing in disguisse."

Bruce Carroll

"Light up your face with gladness, hide every trace of sadness,

although a tear may be ever so near."

Nat King Cole

" Now I'm no longer doubtful of what I'm living for,

Cause if I make you happy, I don't need to do more.

You make me feel...like a natural woman"

Carole King

"Each of these, my three babies, I will carry with me,

For myself, I ask no-one else will be Mother to these three,

I'm off course, I'm like a wild horse but there's no other way I could be...

in my soul, my blood and my bones, I have wrapped your cold bodies round me.

The smell of you, the face on you

will always be with me!"

Sinead O'Connor

"Your face is just beaming, Your smile got me boasting,

My pulse roller-coastering"

Simply Red

"You raise me up so I can stand on mountains, You raise me up to walk on stormy seas.

I am strong when I am on your shoulders, You raise me up to more than I can be."

Josh Groban

"High up above or down below, when you're too in love to let it go,

But if you never try, you'll never know, just what you're worth."

Coldplay

"To you I would give the world, To you, I could never be cold,

'Cause I feel that when I'm with you, it's alright,

and the songbirds keep singing like they know the score,

and I love you, I love you, I love you, like never before."

Eva Cassidy

"And you can tell everybody, (these) are your song(s)

It might be quite simple but now that it's done,

I hope you don't mind, I hope you don't mind that I put down in words,

How wonderful life is, while you're in the world."

Elton John

Well brace yourself....this will be my most cheerful post ever!
July has brought more positives than June brought negatives!   A series of firsts for Charlie that the rest of us have delighted in!  The earliest one was so long in coming but he is now safely sitting unsupported and can correct himself when he starts to topple over!   As if that weren't enough check out the first picture...we are standing! and boy don't we know it's clever!  He's so proud of himself! He still needs a hand to support him but he's genuinely bearing weight which is such a relief to us all. 

Next milestone (and my personal favourite!) I am "Mama".  I thought at first this was a coincidence, but when he's upset and being consoled by someone other than me, he repeats it until I take him.  Then he cuddles in and goes to sleep! (actually shedding a  tear as I write this - I'm so happy!)
Another new acheivement is grasping his toys and attempting to use them with intent (In the fourth picture, we are proudly managing a dummy and a bell rattle at the same time!)  I know this is a late skill to arrive but that's all the more reason to be pleased that it finally has.

This month has also brought his first sign (More!) - I have tried to capture this on film but its difficult as I'm trying to cooperate with what ever he wants more of.  The closest is the sleepy one where he was actually wanting more 'incy-wincy spider'!

The best news realistically is that we've had our first review with Charlie's consultant that brought only positive feedback.  She is delighted with his progress!  His fits are in decline.  His muscle tone is vastly improved and he 'performed' at the appointment, generously displaying each oof the firsts mentioned above.  The consultant summed up by saying he had made 'real significant progress', nicer still she repeated her stance on children with Down Syndrome.

"I love these children." but added  "but I have to admit, Charlie is particularly lovely!"   No more than I thought, but praise indeed!
Obviously then it's been a great month and on top of that school's out!   No more work for six weeks!  Which obviously allows me more time with my little loves.  The children I have taught this year to echo Charlie's consultants sentiments were 'particularly lovely' and the generosity of the parents in their wonderful messages, cards and gifts at the end of term were overwhelming.  I thank them sincerely and will genuinely miss their children.

All in all it's been a good month.  Here's to many more!

While trying to update Charlie's blog recently, I seem to have deleted a chunk of it and even more puzzling, one of his entries has jumped to the right of the page!  This isn't intended to be an artistic effect - I just having worked out why it's moved or how to move it back yet!

Hopefully will work out glitches soon but so far....just puzzled!

There are several things these last months we could have done without.   Most significantly, Charlie's EEG results did not bring the comfort we expected.   In fact, quite the opposite!   Charlie is experiencing some seizure activity.   Our first reaction to this was to be frank - disbelief!  Having seen so many seizures in the past, surely we'd have noticed?   However, shortly after these unwelcome results, came some unpleasant nocturnal 'episodes', and all becomes clear - You don't notice anything when you're sleeping do you?

So we're back to sleep deprivation.   Well I say back, I don't think we ever left it.  Charlie sometimes has a good nights sleep but do Paul and I? - Not really!   When he's grizzly, you really daren't ignore it and when he's peaceful, you're worried he isn't making any noise so you go and check on him anyway! - Poor chap can't win!

To cap it all, by the time everyone's settled, one of the girls almost invariably starts their nocturnal wanderings. There's literally always something happening in our house!

Charlie has also had some unexpected weight loss and whilst he certainly doesn't look malnourished, there's obviously some degree of professional concern that his weight's moving in the wrong direction particularly as he isn't the most active little boy.

One of his therapist's recent reaction to the news he had started to wave 'bye-bye' was:

"About bloody time you started doing something Charlie!"

I'm surmising from this that she isn't overly impressed with his general progress!

People ask innocently "Is he walking yet?" I answer, "Not quite!" - This is diplomaticaly stretching the truth as he isn't even safely sitting yet and his physio is obviously concerned he needs to start weight-bearing.

So admittedly so far, the glass is sounding at least half empty...except that isn't the way I feel.   I've noticed something recently and it's this...People are ridiculously kind towards us - Both people we know, and people we don't.   I find the kindness of strangers immensely touching and simultaneously puzzling.   Charlie elicits smiles, gentle touches, wistful looks and good wishes from almost every stranger that bestows him more than a fleeting glance.   Older ladies want to hold his hands and are clearly entranced by his smile.  Older gentlemen treat me with a strange kind of reverence and often squeeze or pat my shoulder, or offer some similar fatherly and affectionate gesture I've done nothing to deserve.

I've been told I should find this patronising. - Well I'm sorry I don't!   I think it's wonderful, firstly that Charlie clearly touches people and after meeting him they take away with them not just the memory of his smile but a reflection of it, and secondly, the gentle pats and squeezes, I see as recognition of the immense pride and love I have for him - I think it's tangible - and that's why people touch!

I'm afraid I don't hold with the popular view that you shouldn't use words like 'normal' and 'disabled'. Why not? Charlie isn't normal and he is disabled! The term 'differently-abled' has that 'do-gooder' ring to it and I'm willing to bet it wasn't originally coined by someone with, or a relation of someone with a genuine disability.  I don't feel stigmatised by or ashamed of these terms and labels and I'll make sure Charlie isn't.  I think it's part of the same attitude that enables me to feel pleasure and not defensiveness in the face of these 'kindnesses'. I'm grateful for them.   They are a huge plus amidst a stream of little minuses at the moment and I hope they continue!

People we know also show us great kindnesses.  Too many to mention, although a recent one is noteworthy.  My friend's husband recently made us a beautiful sandbox.  Not a small affair but a great big, 'fit-all-three-in -at once', lovely piece of garden furniture.  With the left over wood he made a lovely planter in which Caitlin, Claudia and Charlie now have their own miniature tree and flowers.   He wouldn't accept any payment despite the fact that these gifts would have cost us hundreds to buy.   His wife also reliably informed me that he would be mortified by the surprise gift we were planning by way of a thank-you, because he 'just wanted to do it!'   He wouldn't even hear of a crate of beer which has always been Paul's fail-safe thank-you plan.   Apparently it was reward enough to know that the children would get enjoyment from his efforts.  So by way of a thank you Alan, there's some evidence at the top of this post and some more in the gallery, and also a personal thanks from Paul and I - it's acts of generosity like yours that keep us feeling that the glass is more than half-full - it's over-flowing!  

That's what many people have told me this month.   Charlie is officially losing that 'baby look'.   I'll be honest - this terrifies me; partly bacause Charlie has to be my last baby, so I'll never be here again; and partly because as Charlie moves through each stage,  I have to acknowledge and face different realisations and challenges.

In fairness, Charlie has so far proved far less of a challenge than I could have imagined in the bleak first few days after his birth.   When I have discussed those initial days with close friends and family since, one question has consistently reoccurred:

"How did you get through it?"

The answer is simple.   I got through it because grief, no matter how intense, is not terminal: I survived because I didn't die!   In the first few moments, I thought I might.   In the first hour, I wished I could.  In the first weeks, I awoke with a crushing, heavy sensation and thought "When will this awful feeling go?"   I didn't want Charlie to go of course.   By now, I couldn't take my eyes off him and he held my heart with an iron grip.  I just wanted the nagging sense of gloom to be gone. 

I'd always felt the "Why me?" question was pointless.  I believed the universe was random, so the obvious answer was "Why not?"   After Charlie, it didn't seem quite so random.   Having a third child with a disability actually feels far from random - you feel singled out!   You can't avoid the "What did I do to deserve this?" thought.       Sometimes when he's unsettled, and I bring him into bed with us for a little while, I lie next to him and hold eye-contact, return smiles, even echo the sleepy giggles and that thought came back to me.

"What did I do to deserve this?...What did I do to deserve you?"

In those private, personal moments, I know it must have been something really good!   But this realisation doesn't stop me worrying about my children's future: How they'll cope, What they'll become, What will become of them?          

I spoke to a friend recently about a television programme she had seen.  The programme featured young adults with Down Syndrome going about their working life.  It shared their successes and disappointments.  It's worth mentioning here that my friend has a baby daughter who also has Down Syndrome.  The programme had upset her and she'd turned it off before it ended filled with fear about what her daughter's future might hold.  I've had this feeling many times.  Having now turned into a DS stalker, I can often be found lurking in shopping aisles, tailing the trollies of people I have noticed with Down Syndrome.   Sometimes there's something fundamentally adorable about them, they seem to be coping really well, sharing a laugh with family, choosing their favourite nibbles and I walk away feeling reassured.  Other times, they seem frail, prematurely old, wistful looking and there's something fundamentally heart-wrenching about them.  I walk away terrified, wondering how Charlie will cope when I'm not here to look after him.  For that matter what will happen to all three of my babes?

But at the end of the day the worrying is pointless and self destructive so I now actively avoid looking too far ahead and I console myself with the words of Anne Lamott:

You don't have to see where you're going, you don't have to see your destination or everything you will pass along the way.   You just have to see two or three feet ahead of you.

The two or three feet ahead of Charlie at the moment holds only minor questions: Will he be able to stand soon?  How long will I get away without cutting his hair?  Did that sound like 'Mum' to anyone else?

Maybe every parent would gain a little something from just pausing a moment and enjoying their children today, now, in the moment they're in.  Letting go of all the everyday worries;

'Will they make the football team?' 'How will their SAT results be?'  'Are they too timid/boisterous/confident?'  

Just for a minute let it all go and think:

'Who cares?  They're mine and I love them.'

Here's something I read recently:

All parents worry about their children's future and see plenty of examples of what they don't want their kids to become.  Its human to hope that our child won't be rude like Uncle Stuart, or mean, or lazy, or dishonest.  When our child has a disability, the negative possibilities may seem more clearly defined and more certain and, most important, more alien.   We may never have had a meaningful personal exchange with an adult with disabilities, so we have no way to imagine such an interaction as something other than distasteful, uncomfortable, or frightening.   The parent of a toddler with severe brain damage, seeing an adult who is profoundly retarded looks at his child and thinks, "Will I still love him tomorrow?"   But our child won't be an adult tomorrow.   He is not, suddenly, overnight, going to become the shadow on the wall or the monster in the closet of our imagination.  And when he is grown, we will not see him as defective or hopelessly dependent, because he will still be our child, someone we have loved, grown with, and come to know day by day.                                      

I will live today loving my child as he is right now, and not project fearful possibilities into the future.

So that's what I'm doing and to be honest, it really isn't that difficult.  Looking at Charlie, it's impossible not to love him - he's beautiful.  Paul thinks he's the bonniest baby he's ever seen and although it's completely improper to brag like this - I've never seen a child I thought anywhere near as cute.  I happily wear the rose coloured spectacles of a mother and believe he is gorgeous.  Not "Cute considering the Downs" or "Adorable in his own way!" but genuinely, heart-stoppingly gorgeous.  Doesn't this make me normal?  Aren't my unrealistic ideals the same as the ones held by most loving parents?

I don't know what the future holds for any of us but I know the morning will never come when I look at my children and don't feel that 'love at first sight' lurch in the stomach.  I think that's all I really need to know!

So I've spent a year with this gorgeous boy now and what has he taught me?



Firstly the capacity to love is infinite! I could never imagine loving anything or anyone more than Paul and I love our children, or each other.



Secondly he has redefined friendship for me; The friends I seem to have had a lifetime have proved they will be friends for life. I love and value them more than ever before.
Some friends I haven't had for so long have proved they are worth crossing the globe for! Most friends and especially Charlie's Godparents have simply 'been there', - quiet asides to Paul and I when it has been necessary, cuddles for Charlie and the girls, small things that ultimately mean everything.
I have also realised throughout the course of the year that people I had previously considered friends are actually just colleagues and that that's ok. We all have our own lives to lead and we all keep those who are the most important closest. In some ways this has been the most important lesson of the year. It allows me to spend time with those who actually make the most difference because I'm not so divided and I realise that I still care about and respect everyone else anyway. In almost every case, despite spending less time with people, I think no less of them than I ever did.



Thirdly family are, as they always were, fabulous! I wouldn't have thought it would be possible to become closer to my siblings as I have always loved them so dearly. Charlie has also changed my view on that! I spend less time with them out of necessity but value them more than ever and thank God for them almost daily, they are one of my greatest blessings! The Grandparents of my gorgeous children are as loved as they ever were but mostly, infinately more respected. They allow Paul and I 'private time' when we realise that as hard as it is to comprehend, we have a love, a friendship and a bond that exists beyond our children and is undoubtedly my greatest gift in life. There are some family members that Charlie seems to have forged more of a bond with and for this I'm also very grateful. I enjoy spending time with them far more than I ever thought possible before and I realise that ideas we have formulated over many years can be proved wrong and foolish in an instant.



Finally I have realised that there are some people who despite the opportunities and crossroads they are presented with, will never, ever change and I must allow them that. At the same time I don't need to agree with them and never see that as likely - that is also ok, because in all Charlie has taught me as I said initially, that the capacity to love is infinate. Those closest to me especially my gorgeous girls, my wonderful husband and of course the legend that is Charlie I have come to realise are all that is important in life. The most important gift Charlie has bestowed is that I hold no ill feeling towards anyone. Its probably the first thing he taught me! Many years ago I read that the last words Anne Frank wrote in her diary were "people are good." I remembered being astounded at the time that someone in her incomprehendable circumstances could think that, after all she had witnessed. I know nothing of her heartache and trauma but have realised in a year of adversity that strangers are kind, friends and family are 'soul food' and yes, basically people are good!



Charlie in one year you've been quite a teacher!