Thursday, 25 December 2008

Open Your Gift from God (Rick Warren)

You’re not reading this by accident. No, God knew before you were born that you would be here in this moment. He planned to get your attention for just a few seconds so he could say this to you: “I’ve seen every hurt in your life, and I’ve never stopped loving you. You matter to me. I love you more than you will ever know. I made you to love you, and I’ve been waiting for you to love me back.”

God is saying, “I want the rest of your life to be the best of your life. I’m with you, and I’m for you. I want to save you from your past. I want to save you for the purpose I made you for. And I want to save you by my grace. If you’ll let me do that, I will give you peace with me, peace of me, and peace with other people. But you’ve got to open the door and receive the Christmas gift.”

If you gave me a Christmas gift and I never opened it, you would be disappointed. And it would be a worthless gift because I don’t receive the benefit of a gift I never opened.

Jesus Christ is God’s Christmas gift to you. Yet some of us have gone Christmas after Christmas and never opened the best gift of all – God’s gift of salvation. Why even celebrate Christmas if you’re not going to open the biggest gift? It doesn’t make sense to leave unwrapped the gift of your past forgiven, a purpose for living, and a home in heaven.

Jesus Christ says to you, “I can replace the frustration in your heart with peace. I can replace the guilt, resentment, shame, and grudges with forgiveness. I can replace the worry and anxiety with confidence and faith. I can replace depression or despair with hope. I can replace emptiness with meaning and purpose. I can replace confusion with clarity. But I’m not going to break down the door of your heart. You’ve got to invite me in.”

God says: “It makes no difference who you are or where you’re from, if you want me and you are ready to do as I say, the door is open.”

It doesn’t matter what your religious background is – Catholic, Protestant, Jewish, Muslim, Mormon, Buddhist, Baptist, Hindu, or no religion. This is not about religion. God didn’t send Jesus to give you religion. He sent him so you could have a personal relationship with God. It’s all about relationship.


Dear God, I’m scared, but I want to get to know you. I don’t understand it all, but I thank you that you love me. I thank you that you’re with me even when I didn’t recognize it. I thank you that you are for me; that you didn’t send Jesus to condemn me but to save me.

I admit I never even realized I needed a Savior, but today I want to receive the Christmas gift of your Son. I ask you to save me from my past, my regrets, my mistakes, my sins, my habits, my hurts, and my hang-ups. Save me from myself.

I ask you to save me for your purpose. I want to know why you put me on this planet. And I want to fulfill what you made me to do. I want to learn to love you and trust you and have a relationship with you.

I need peace with you, God, and I need you to put your peace in my heart. I need you to take away the stress and fill me with your love. Help me be a peacemaker, to help others find peace with you and each other. In your name I pray, amen

(© 2008 Purpose Driven Life. All rights reserved)

Wednesday, 24 December 2008

Overjoyed... Grateful...

...relieved that Christmas is so much more than turkey, cards, presents, carols, tinsel, snow, sleigh-bells and santa!!

It's more than what we can ever know, hope for or imagine.

"Christmas is much more than the sum of all our memories and expectations. It goes far beyond a family celebration or a retail event. It is about the entrance of the almighty, eternal God into human history on an astonishing rescue mission. It is about a gift a million times greater than the most opulent present. It is about a peace far beyond any human ceasefire.
It is about Jesus. It is about love on a scale we can barely imagine." (From introduction to the Christmas week, Closer to God, © Scripture Union)

Have a very joyful, peaceful, hopeful CHRISTMAS ... !!

PS - you can catch us celebrating here :o)

Friday, 19 December 2008

the ovengloves in 'action'

...speaks for itself. Surely.
(see previous post - about half way down)

Saturday, 13 December 2008

Bathing by candlelight - and other bites of loveliness

The lightbulbs in our bathroom have both 'blown', and so I am quite enjoying bathing the children by candlelight for the time being... it feels rather romantic and relaxing! It makes the room a lot warmer too!

Here is Fireman Tom, 'label-ted' in tow (I should explain - this teddy has only one thing going for it: the silky label on its bottom! Were it not for the label, Tom would simply not want to know).

Ben and Tom pretending to make me 'dinner'. The whole game took on a new dimension when they started experimenting with the oven gloves...

This picture is of the 'finale' of Tom's nativity play. There is something so incredibly moving about Joseph and Mary in wheelchairs... I think maybe it speaks to me of God's perfection meeting with our imperfection at Christmas time.

Mark had run out of hankies. I gave him hankies. (he counted them, there were 25)

An early morning shot of mummy and Ben. He looks particularly exquisite... Me? Bit sleepy!

This last one was a self portrait. I had given Sam my camera in one of my more generous moments... I think this one came out just perfect!! He really IS that goofy in real life. Ah, Sam! We love you!!

Friday, 12 December 2008

just a quick little note to say I have started a new blog...
i felt the Lord ask me to do this, as recently i have been struggling to have a devotional time every day
i hope to simply copy the verse(s) which 'jump out' at me as i read
and then maybe (maybe not) write a few thoughts on why that particular verse speaks to me, what i feel God may be saying through it
through this exercise, i hope to be forced to really ponder what i'm reading, not just skim over a passage and consider my quiet time done and dusted for another day!
already i have been meditating on Scripture more readily, more naturally, more excitedly
and feel enriched and invigorated by God's Word
i do not plan to be legalistic about this, and so may not necessarily post something every day, although that is certainly my aim...
for i am under grace, not under law.
please come and take a look, and contribute your thoughts as you feel led.

blessings to each and every one of you
thank you to those of you who read my blog, i am more grateful for your friendship and your love than you will ever know

Just couldn't resist posting this...

(Mr Wibbz, in a slightly less sane moment... Dancing to "Girls" by Sugababes. Oh help.)

Thursday, 11 December 2008

Prayer in action

This is the true story of a pastor who was too busy for a homeless lady who’d asked him to help her, so he fobbed her off with a promise to pray for her instead.
She wrote this poem and gave it to a local Shelter officer:

I was hungry,
And you formed a humanities group to discuss my hunger.
I was imprisoned,
And you crept off quietly to your chapel and prayed for my release.
I was naked,
And in your mind you debated the morality of my appearance.
I was sick,
And you knelt and thanked God for your health.
I was homeless,
And you preached a sermon on the spiritual shelter of the love of God.
I was lonely,
And you left me alone to pray for me.
You seem so holy, so close to God
But I am still very hungry – and lonely – and cold.

This hurts...
Maybe mostly because I, also, am guilty...
I am oh so very good at promsing to pray for somone - and yet how many times have I forgotten to do even that!
I feel so convicted.

"Faith without actions is dead" (James 2:26)
"Dear children let us not love with words or tongue but with actions and in truth" (1John 3:18)

Monday, 8 December 2008

Passing the Purple Hat to You (it was meant to be about 2 months ago... sorry!!)

(written after she found out she was dying from cancer).

I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.
I would have burned the pink candle sculpted like a rose before it melted in storage.
I would have talked less and listened more.
I would have invited friends over to dinner even if the carpet was stained, or the sofa faded.
I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.
I would have taken the time to listen to my grandfather ramble about his youth.
I would have shared more of the responsibility carried by my husband.
I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.
I would have sat on the lawn with my grass stains.
I would have cried and laughed less while watching television and more while watching life.
I would never have bought anything just because it was practical, wouldn't show soil, or was guaranteed to last a lifetime.
Instead of wishing away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.
When my kids kissed me impetuously, I would never have said, 'Later. Now go get washed up for dinner.' There would have been more 'I love you's', more 'I'm sorry's.'
But mostly, given another shot at life, I would seize every minute. Look at it and really see it . . live it and never give it back. STOP SWEATING THE SMALL STUFF!!!
Don't worry about who doesn't like you, who has more, or who's doing what
Instead, let's cherish the relationships we have with those who do love us.

Oh Lord help me to live this day without wasting a minute, without wishing any moment away, and with the grace only You can give...

Sunday, 7 December 2008

Tom likes it in bed...

...although I don't much care for him being poorly... and much as I love cuddling up with him in my big bed, I quite prefer it when he's his energetic, active, bubbly other self. Oh how I long for the warmer days of spring and summer, when the threat of infection is so much reduced, and I can breathe a sigh of relief for a while! I am tired of winter already, and I am liking it in bed, too...

Friday, 5 December 2008

it's my turn...

i have finally succumbed to the bug that's been doing the rounds in our home, and have spent the last 24 hours in bed, swallowing razor blades.
i don't get really ill all that often - thank goodness!! but right now, i feel really ill. properly ill, with a temperature, achy body, raw throat and waves of nausea coming and going...: the works, basically.
however i will say one thing: i'm so grateful it's the week-end and mr wibbz can be there to help. oh, and another thing: mr wibbz is a superb nurse. i'm finding myself pretty moved by the way he's looking after me, and being understanding and strong. considering he's only just had 2 days off work himself with the same, nasty virus, and has only just returned back to work, i take my hat off to him!
thank you Mark...

Thursday, 4 December 2008

Craving a simple Christmas

Each year I am appalled and pained at how our society masks the truth of Christmas, and misses the point by about a thousand miles.
"...the garishness of the season seems to provoke me more than ever. a few days ago i wandered the store aisles, turned shiny balls over in my hand, brushed against velvet with cold fingers, cringed at the plastic music. i left hollow and starving for something more..."
Tonia, a lovely blogging friend of mine, has written about her hunger for a return to the raw meaning of Christmas: a simple Christmas, which in its simplicity and bareness, shows Christ unadorned, in all His glory.

Please visit Tonia's blog and read the whole post. It would also be of great benefit to anyone who is sick of the way Christmas has turned into a spending binge, to watch the following video. And go to this website for more on the Advent Conspiracy... Awesome stuff.

Come, Lord Jesus...

Friday, 28 November 2008

Hamster Dance

Here's another priceless one...
The Hamster Dance is Sam's current favourite 'tune', along with Crazy Frog. Yep, precisely the kind of music that will drive any grown-up insane. Still, he loves it, and his dancing is hilarious - so it's well worth the watch!

Just one word of warning though: some of you reading this blog might not particularly like the 'noise' Sam is dancing to, and the beat of this tune is particularly fast, crazy, aaaand annoying - so please mute your players before pressing the 'play' button... if you see what I mean!!


Thomas is off school today, as he is supposed to be poorly... Can you really believe he's poorly??!

Isn't it weird how my kids sometimes seem to be at their funniest when they're unwell?!? Here he is playing on the hopscotch rug in Sam's room, and it's an ideal opportunity for him to practice his numbers... He loves counting, but so far we haven't graduated to two-digit numbers. Yet. Oh well, he's got the rest of his life to carry on learning ; let's just hope he carries on playing too :o) ...

Monday, 24 November 2008

Great news for T21 in the UK

This was on the news today, and it was music to my ears...!

According to a recent survey, it would seem less women are terminating pregnancies which are likely to be affected by Down Syndrome. Read more here

I am utterly delighted to hear that efforts to raise awareness of DS - at least in the UK - seem to be having a positive influence on people's attitudes towards this often misunderstood, yet fairly common 'condition'.

Things are going in the right direction, at long last.

Saturday, 22 November 2008

Warning! Irritable - read at your own risk...

Seeing as I have been updating my Facebook status every 5 minutes in the last few hours (or so it feels), I figured maybe I actually had stuff to get off my chest, and so ought to just use my lovely little blog to vent. Just this once. After all, it doesn't get all that much abuse; I have been kind to it on the whole, and treated it with respect. So a tiny, random, harmless (but heartfelt) rant once in a while won't hurt. Surely.
(Will it??)

And just to clarify, I don't have anything in particular to get off my chest, in case you were wondering. It's just that life, with all its little daily intricacies, has got on top of me tonight - and I feel downright irritable. Nothing major has caused this, and I should know better by now than to mope and feel sorry for myself.
However, this is my blog and 'I do what I want, cuz I can'...
(and if you're bored, you could just use this post as an exercise in counting: for example, how many times does the word 'just' appear in these humble lines?...)

Anyway. Tonight, I am hyper-irritable. And before you ask: yeeeeeeees, it is that 'time of the month'.

But still, who gave my children the right to be so unbelievably annoying??? Obnoxious, selfish, rude, smelly, and noisy?? And how come they all come back from a lovely brisk walk on this crisp autumnal day grumpier than when they set off??!

Why can they not just enjoy simple pleasures of life such as playing in mud, kicking a football around the garden, or just sharing a nice evening meal with their loving, doting mummy and daddy...?? Why the constant urge to fight, to whine and find fault with the slightest thing, to shout, throw rice and bits of sausage across the room - and spill water in MY plate of food, for goodness' sake??!!!

So we come back from the walk that was supposed to make everyone happy, and the 2 'little ones' are crying, while the older one is harassing his father incessantly to take him 'on a trip' (this is code for: 'I want you to buy me the new "Clone Wars" DVD'...). Needless to say the little ones just get plonked in front of the TV, while Sam is absolutely NOT taken on a trip to buy Clone Wars.

Mark and I then decide to speed up the whole bed-time process, so that we can get some peace and quiet at last. But the irritation grows, and becomes nearly physical - to the point where I'm almost itching myself...

This is where I start updating my Facebook status:
6:12pm - Rachel is INCREDIBLY irritable... >@( *this is supposed to be a cross face, by the way...
6:19pm - Rachel is INCREDIBLY irritable ... and cannot WAIT for everyone to get to bed... AAAAARGHHHHH!!!!!
6:42pm - Rachel is so irritable she will now leave the house and go on a quest for chocolate and wine.
7:29pm - Rachel has wine, and chocolate... Phew!
7:37pm - Rachel is wondering whether to eat the 2nd one??
8:57pm - Rachel ate the 2nd one... Yum!

And in case you're wondering what 'the 2nd one' referred to, have a little peak here...

I mean - can you blame me???!

Anyway, after the latest update, a friend comments 'I bet you feel soooo much better for it!'... I reply: 'well, I feel a bit sick actually... Oh dear :$ (I think that's what they call instant gratification??)' *maybe that should've read 'divine retribution' instead - but I believe in grace and forgiveness, which is just as well.

So, to conclude this little rant, I will say that the chocolate and glass of wine (red - please...) did help, somewhat. I feel a tad less irritable, or more chilled out, depending on whether you are a 'glass-half-empty or glass-half-full' - type person. Sam, our 8 year-old, is still struggling to get off to sleep, and it's 22:28 pm. I think he inherited that from me, poor boy :o(
I am now feeling sick and headachy, from the chocolate and the wine, and my bed beckons.

But when all's said and done, I'll start again tomorrow: do my best to live life to the full, whatever it brings, 'for better, for worse' (they didn't tell us, when we made those vows, that they extend for the most part to whatever offspring is thrown in to the mix...). Do my Utmost for His Highest, knowing that when tempers fray, and all isn't 'hunky dory', by His grace, and with a bit of help on the side (in the form of chocolate and wine, Facebook and blogging), I'll make it to another bedtime, and be grateful for it all - and especially wine, and chocolate.

PS: and that's 10 'justs', just in case you couldn't be bothered to count them all up after all. Oooops, nope, make it 11...!! Is that right?? Or did I miss one...?

Tuesday, 18 November 2008

Who put that there???

There is a FOR SALE sign just outside my house.
And it's not exactly small either!!

As if I needed reminding...

Ben discusses geography

Isn't my little boy making progress with his speech?! I love the way he sees pictures of stones and thinks "cake"!! He's such a scream... :)

This was taken at about 23:30 last night; Ben suddenly got up, and decided he was wide awake and wanting a chat. Please note this is the same child who had woken up with a raging temp that same morning, and spent the majority of the day curled up in a ball on the sofa, watching Chitty Chitty Bang Bang...

Needless to say he was well enough to go to nursery this morning. Just as well, seeing as it's my turn to be all curled up today :(

Sunday, 16 November 2008

8-Year-Old Love

This arrived on my bed one evening not so long ago...

It made me cry!

It was from my Sam; he has the most delightful sense of humour and an incredibly tender heart. But to my shame I often forget and fail to look deeper than the surface. So 'small' touches like these humble me, rebuke me, and reassure me that beneath the often indifferent exterior, there is indeed an abundance of feeling.

Oh how I love being a mum...

Thursday, 6 November 2008

Out of the boat

That's it!
We've stepped out of the boat. (see Matthew 14:22-29)

This house, our lovely home, is 'on the market'... (the link won't be available for very long, so feel free to take a peek while you can; I think it's a pretty 'saleable' house, don't you??)

I should be feeling excited - right?
Well I'm really not:

...and grieving a little bit.
*ok, more than a little bit*

I simply can't believe it's happening; it feels very strange and surreal.
I also don't think I have the strength I know I'm going to need to get through this next bit.
To pack everything up.
To uproot everyone.
To say goodbye.
To look for houses, schools, doctors
A church, a gym,
New places to go with the kids when they get restless,
New friends,
... A new life...

I am so churned up right now!

Does this make sense to anyone out there????

Sunday, 2 November 2008

New Beginnings

Well, I failed miserably to complete my 31 for 21 challenge!
Although to be honest, it was never gonna work - I mean, what was the likelihood of me being able to sit down and blog for up to an hour (or 2) each day when I was also busy toilet-training the very child I was blogging about...??!?
Needless to say we're a looooong way off from succeeding, and have yet to get him to poo anywhere else than his pants. So I've also been busy doing a LOT of laundry, which I guess is a by-product of toilet-training. Oh my.

There is also something major (well - apart from potty-training obviously...) going on in our lives right now: we're moving!

Mark has been offered a very interesting job in Devon, and so we are in the process of getting our house ready to put on the market, which is no mean feat - especially in the current economic climate... In less than 6 months' time, we'll be beginning a completely new life down there!

We have NO DOUBT that this move is of God; the way He has orchestrated it all is extraordinary, and we have faith that He is the one leading the way. But it is nonetheless a pretty big thing for us - and it completely caught us unawares, because moving away from where we are now was never something we were seeking or anticipating.

God is good, but He never allows His children to stay comfortable for very long.
So I guess, I will be blogging from this new perspective from now on.
I am scared of what lies ahead, I am sad to be leaving many loved ones behind, but I am 100% certain that this is His plan for us.

Sunday, 26 October 2008

Diagnosis (Early Days #4)

Get It Down; 31 for 21

**First for some inadequate excuses. I have been poorly this week - in fact on and off since this time about 2 weeks ago... And when not feeling too rough, I have been really too busy trying to tackle a backlog of washing and other chores to justify sitting at my computer, catching up on '31 for 21'! So it's looking increasingly like '21 for 21' instead ... which actually sounds almost as good!!

And now I'll get on with this post, which I've been promising to write for about the last 2 weeks...

There had been no hint that anything was 'wrong' (or rather 'different'...) at the time Tom was born; so Mark and I spent the first 6 weeks blissfully unaware that our little guy was actually fighting for his life.

Looking back, however, I remember feeling a little bit concerned about the amount of hours Thomas slept; about the number of times he choked during his feeds, and about how 'floppy' he seemed to be. Of course when you don't know anything, and you're a 'new', hormonal mother of a 'new' baby, you just dismiss any concerns, and feel rather silly for even having them in the first place. You don't want to say anything in case the 'professionals' laugh at you and set out to prove you wrong. Because that'll only upset you, and you really, really don't want to get upset with that amount of hormones raging around in your body!!

Tom and I had a routine check-up at 7-8 weeks. Unbeknown to me, I think our Health Visitor Jo had already raised some concerns with the Doctor, and had probably even expressed her suspicions that Tom might have Down Syndrome... But it wasn't within her rights to tell me what she felt. So she said nothing.

Our lovely Dr Miller then set out to check Tom out thoroughly; she spent a loooong time listening to his chest and heart in particular. And repeatedly pulling him into a seating position from him lying on his back to see whether his head would 'follow' the rest of his body, or flop back... I'm 100% sure Dr Miller had taken one look at Thomas, and known immediately. But it wasn't really within her rights to tell me what she saw, and make a diagnosis; so she didn't.

She refered Tom to a Consultant Paediatrician at the same hospital where he had been born. She must have put 'urgent' on her referral, because we got seen pretty quickly!!
The Paed was one of the most professional yet delightful, compassionate doctors I have ever met. Having been told in Dr Miller's referral letter that Tom had a very significant heart murmur, Dr Kumar spent about 15 minutes just listening to his heart and lungs. And examining every inch of our tiny baby boy.

I remember the sense of dread slowly seeping into my whole being, and feeling clammy, and sick with worry, knowing that something was seriously wrong. Mark was with me through the whole thing, but I was hardly aware of his presence. Or of how he might be feeling...

We knew he was going to give us some bad news, but DS simply hadn't crossed our minds! Not in a million years did we ever imagine one of our children might have Down Syndrome... So when Dr Kumar gently told us that as well as having a significant heart condition, he was pretty sure Tom had Down Syndrome, it felt like a dark shadow had suddenly obscured all my thoughts and senses.

After finally giving us his diagnosis, which he said needed backing up by blood tests, Dr Kumar encouraged Mark and I to leave the room so we could react in private. When we did, I fell into Mark's arms, and cried, and sobbed, and wanted to scream at God that it wasn't within his rights to give us a child with disabilities! Mark just held me, too shocked to really respond to the news in his own way; it would take him much longer before the reality of it started to sink in properly. He was very quiet... and loved me in my grief.

Once we left the hospital, we drove around town for a while in a complete daze. Even though we knew the diagnosis wasn't 100% certain, we had no doubt it was nevertheless accurate - and that Tom's heart would need fixing. We had a child with Down Syndrome, who was going to need fairly urgent heart surgery, and who in the meantime was put on medication to stabilise the insane amount of fluid his heart was pumping round his body, putting his lungs under intense pressure...

It was a lot to take in.
Looking back, it still is...

Wednesday, 22 October 2008

Welcome to Holland

Get It Down; 31 for 21

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

(©1987 by Emily Perl Kingsley. All rights reserved)

Another 'cheat's post'... I know! But this says everything - and more - about what it's like to have a child like Thomas. Holland was unexpected, a shock at first; and it's certainly different. But it is beautiful, and it is amazing. And I am grateful to have this opportunity to explore Holland as well as Italy. Although I must say Italy has many unexpected, unknown, unexplored places too... and is not all it seems.

Sunday, 19 October 2008

The Down Syndrome Creed

Get It Down; 31 for 21

My face may be different but my feelings are the same.
I laugh and I cry and take pride in my gains.
I was sent here among you to teach you to love,
as God in Heaven looks down from above.

To Him, I'm no different
His love knows no bounds;
It's those here among you in the cities and towns,
that judge me by standards that man has imparted,
but this family I've chosen, will help me get started.

For I'm one of the children so special and few,
that came here to learn the same lessons as you.
That love is acceptance, it must come from the heart;
we all have the same purpose, though not the same start.

The Lord gave me life to live and embrace,
and I'll do it as you do, but at my own pace.

(author unknown)

NB: I know this is a cheat's post, but there are lessons to be learnt from this, I like it, and I've been waiting for an excuse to post it! This coming week I will talk about Tom's diagnosis, and DS, and attitudes in more detail... But for now, it's bed time: it's been another busy Sunday! Where Tom did NOT end up in the swimming pool!!

Friday, 17 October 2008

21 Facts about Thomas

Get It Down; 31 for 21

1. He totally adores playing with cars. Obsessively so

2. He has 'fallen in love' with Eddie, his new bus driver (an upbeat, hilarious Scotsman), and pretends to cry when he gets dropped off after school...

3. His favourite word at the moment is 'monkey'.

4. 'Monkey' is his favourite term of endearment for pretty much anyone he comes into contact with (in the UK this means 'a person regarded as somehow like a monkey, as a mischievous or imitative child'). He calls me "Mummy-Monkey"; except it sounds more like 'makee' or 'makick'

5. His favourite movie is Tarzan. He knows the dialog by heart, and is able to expertly mime everything that happens in it

6. He hates bananas...

7. ...and most other types of fruit - apart from satsumas or clementines (apparently). He calls these orange ('awidg') yet when I offer him orange, he throws it across the room and declares 'no, awidg, yuk!'

8. He hates any type of veg

9. He drinks very little

10. He 'suffers' from chronic constipation... *surprised?!?*

11. He started walking just before he turned 3

12. He's unbelievably cute - AND HE KNOWS IT!!

13. He loves his own space, and puts his toy basket against his door when he's playing in his room so his brothers can't get in. If they try to force their way in, he screams: 'geh outta mah woooo...!'

14. He is incredibly strong despite also being on the 'floppier' end of the spectrum for Down Syndrome - and your safest bet is to keep well out of his way if he's in a strop

15. His favourite foods are 'ahwidgis' - and no, that's not 'oranges' (watch the clip in my previous post and you'll get it!), pizza, and ice cream. *Yup; he is just a boy...*

16. Seeing as he likes pizza, I make my very own tomato topping which I cram full of veggies and sometimes an apple too; and then blend within an inch of its life. He wolfs it down and is none the wiser. Hehehehe...

17. Whenever he passes wind, he faithfully apologises ('paden meee...!') then giggles profusely

18. He instinctively knows how to elicit a smile out of even the grumpiest soul

19. He responds to men infinitely better than women

20. He is the most fickle little 'monkey' I've ever known...

21. He likes silky labels (the ones you find on the inside of most clothes) and is perpetually on the hunt for one to stroke, especially when he's tired. This can make getting dressed a considerable challenge...

I'll have to run a 2nd one of these lists - one is just not enough...
But it'll do for now!

Wednesday, 15 October 2008


Get It Down; 31 for 21

...I could listen to that giggle all day long. Isn't it just the most delicious sound?!

Tuesday, 14 October 2008


Get It Down; 31 for 21

Thomas was chosen to represent the Variety Club UK for their 2008 Christmas Toy Appeal. At 6, he is an ambassador for Down Syndrome... Not that I'm proud or anything - but I think he has genuine 'star quality'. Have a look!

Blissful Ignorance (Early Days #3)

Get It Down; 31 for 21

Once I had got over the initial shock of giving birth in such a dramatic way, and once the milk had 'come in', I quickly settled into having a new baby at home. The first 6 or 7 weeks were dreamy, and I remember feeling elated, full of joy and purpose, and soooo in love with my Thomas!

He was the cuddliest baby, and he spent hours 'snuggled' into me, his little floppy body tucked into a ball fitting neatly onto my tummy. It was like being pregnant, except it was much, much nicer...!!

He fed well although he did tend to choke very easily, and used to come up for air quite a lot more than Sam had. He was a 'well baby', according to the health visitor. He slept all the time, and I remember thinking what a good baby he was. At night time however, he 'squeaked' in his sleep and so he ended up on the landing just outside our bedroom door so that we could get some sleep!

Little did I know that we could have lost him at any time. The squeaking wasn't just a 'quirk'; it was because he was struggling to breathe. The reason he slept pretty much 22 hours out of 24 was that he was exhausted from the breathing and the feeding. Little did I know that in those weeks, he was in heart failure much of the time... I didn't know because no-one told me there was anything different about this baby!

After delivery, the useless midwife which had been 'supporting' me in labour washed him and put him on me to feed, roughly forcing my nipple into his mouth. She had obviously missed out on the part of her training which taught her to look out for any unusual features in a newborn... Because she was just desperate to get home, and so really didn't take a second glance at my baby. Never mind the slightly upwards-slanting eyes, the small, lower-set ears; the flat nasal bridge, the curved little fingers, the sandal-gap between his first 2 toes... Never mind his tiny little mouth, cute button nose, yellow tint and general floppiness.

But it wasn't just that one midwife. Oh no it didn't stop there! Absolutely no-one saw it; from junior health-care assistants to consultant paediatricians, whoever routinely happened to come into contact with Thomas didn't stop and look a little more closely.

Can you tell I am still reeling? Still angry?! Still bemused by the fact we were so let down by the maternity department after Tom's birth.


Don't they say 'ignorance is bliss'?? And those first weeks were just that: bliss. It felt like we were a proper family, and that our second son was going to be a piece of cake!

Little did I know that things were about to change... And that our entire world was about to get turned upside down.

Letting the side down...

Get It Down; 31 for 21

I'm not doing great with the whole 'one post a day' thing here... I feel terrible! But then there is that little button in my sidebar stating that I'm "blogging without obligation".
And I am sick.
And I have very little spare time.
And it takes me AAAAAAAGES to write anything half decent.
And I'd started writing a beautiful post about 'what happened next' - and my freaking computer decided to shut down IE7 - without allowing me to save what I'd written first. I was SOOO cross it made me bite my hubby's head off several times more than I normally would... And after that I completely ran out of steam, totally deflated that my efforts had been wasted.
But I shall choose to forgive Microsoft for destroying my precious work; it probably wasn't that good after all.
And I'll give it another go.
I guess that's what life is all about isn't it??

Sunday, 12 October 2008

Disciplining 'That Boy'

Get It Down; 31 for 21

It's not that easy trust me! I mean you've seen how cute he is, right??
But beneath the cuteness lies a rather naughty, manipulative streak. He knows he's cute and plays on it; he thinks he can get away with murder - and he probably could! Yes, butter would not melt in that little boy's mouth.

Seriously - it is a known fact that all kids feel safer when those in authority over them deal with unwanted behaviour consistently and make the boundaries crystal clear. But with our Tom, it is all the more crucial to be consistent and straight down the line, because he forgets things quite easily from one incident to the next; and as he learns best through repetition, the way he is disciplined has to be consistent...

So if he hits, or throws, he has a warning and then goes straight to his room. If he refuses to eat, he can't watch TV. He's not allowed food in the lounge unless we specifically say it's ok and give it to him ourselves. If he gets up after we have kissed him goodnight, we shut his door.

And so on.

However it's all very well being consistent with Tom, but it is also just as important that his brothers are treated the same... And that's where it gets a lot more complicated! The other two boys are both on the Autistic Spectrum, and so have needs and difficulties which are completely different, sometimes even opposed to Thomas's. For example, if Ben has a temper tantrum, the trigger might be a lot less obvious, and the reasons much more complex - it could be linked to anxiety, or misunderstanding/ misinterpreting of a situation or something someone has said or done. So occasionally, I have to give him the benefit of the doubt, and respond to the tantrum with much gentleness and reassurance instead of shutting him out.

Still, with Tom, consistency works really well, and on the whole, we manage to get to where we need to be - although it might take some time if he isn't feeling cooperative!
So today, Sunday, was a week on from 'The Incident'... I had to be at church earlier than I normally am, and there was a high risk that he might 'reoffend' as I was having to watch all 3 of them. So I made it absolutely clear to him that he was not to leave the hall without mummy, and that he was not to go swimming.

Well I'm glad to report that the incident was not repeated, and that he didn't go swimming. I am pretty proud of myself...

But what about you, fellow-parents of a child with DS? What is your take on disciplining kids with special needs? Do you use rewards/ sticker charts/ any special systems...? What works and what doesn't? I really would be interested to read of your experiences - might even do a little summary in my blog of your thoughts, ideas, suggestions if there are a few. But please do share. This month after all, is in part about knitting us a little closer together as a community - and I for one am grateful for the opportunity to feel less alone.

Friday, 10 October 2008

Sleepy-Head and Bed-Hair

Get It Down; 31 for 21

Yes. I know.
More pictures...
So soon...

Can't say I didn't warn you though!!

But this time, I will tell you a little more. Not much though, as it is my own bed-time.

People with Down Syndrome have a tendency to have an under-active thyroid. While this isn't currently an issue with Tom, he is being fairly closely monitored, as one of the symptoms of hypothyroidism is tiredness; and to be fair, Thomas does get sleepy very easily...

Usually, he starts off by going very quiet and looking blank, then lays down on his side anywhere that he happens to be, curls up and looks for a label on any item of clothing he can get his hands on. Sometimes he will start chewing on his thumb and groaning very gently, or he will suck his tongue - an art he has perfected over time...

Tom sleeps easily, and always has. When he was tiny, tiny, he would sleep almost 22 hours out of any 24 - to my relief ("oh what an easy baby!"), but also slight alarm...("...hope he's all right, he does sleep an awful lot...")

One of the pictures here is of him fast asleep ('soundo' is how one of his bus escorts refers to it) in his pushchair, which was taken minutes after he had come off his school bus at 4 in the afternoon. This is a daily occurrence, and the days when he doesn't doze off on the bus are few and far between; those days are great fun, because he will bounce his way out off the bus, ready for more fun and games at home, our very own lively, bouncy Tigger! Sadly this rarely happens, and so the Tom I get is a little boy who is sleepy, and subsequently grumpy as hell, who whines and cries until he is awake enough to accept a sandwich and a drink.

So you see?

For all the fun we have when he's awake, we get a lot of grief from him when he's tired, sleepy, or he has just woken up from an afternoon nap.

But compared to what a lot of people have to cope with on a daily basis, it's really no biggie.
He's just a little boy with a fiery temper, and he is best avoided when not wide awake.

Be warned!!

Thursday, 9 October 2008

Just a Boy

Get It Down; 31 for 21

This one extra chromosome runs throughout his entire body - but really... he's just a boy! He likes a crazy hairdo, slices the air with a lightsaber from time to time, delights in snow and enjoys pretending to be an important businessman. He's just a boy and he plays, plays, plays. He's just a boy and his life is a bundle of fun, giggles, and monkey-ness...
He's just a boy and that in itself makes him extraordinary.

*...more pictures to follow...*