Archive | Down’s Syndrome RSS feed for this section


22 Feb

At 11 years old my little Thomas just took his first shower at home!!!
Words can’t quite express how amazing this is… Believe me it’s a big deal.
He has been terrified of showers for his entire life, but has been ‘training’ at school – and this morning, as I prepared to get in the shower for my daily ablutions, he announced he was going to get in there first.
He promptly popped on some swimming goggles and bravely stepped under the water.
I am so proud and moved by his courage.

Funny how little things most of us see as completely mundane can be such enormous milestones for others….

Never, ever take anything for granted.



Half Term Tales #3: Fancy Face Paint, Synchronised Climbers and Cuddles with a Blue-Shielded Knight

20 Feb

20130220-224047.jpg This gorgeous little princess is a little girl my friend Cathryn looks after – I hasten to add Thomas had never met her before…
20130220-224239.jpg How cute is this….?!
20130220-224248.jpg *melt…*

And finally… Will someone for pity’s sake please PLEASE explain to me how dogs manage to look so worried and sad and neglected for so much of the time??…
Just look at the eyebrows and see if you’re not suddenly consumed by compassion for that poor POORcreature…


It’s the yellow one…

14 Jul

…that’s driving me insane tonight.
Bossy, fickle little shit.

Happy birthday darling one…!!

19 Sep

My beautiful Thomas has turned 7 today. I am so proud of him.It is a tradition in our house to eat chocolate cake at breakfast on someone’s birthday. So I made some cute little cupcakes late last night and there was 1 candle to blow out – in anticipation of the 7 we will have on a bigger cake tomorrow when daddy and grandparents have arrived…He was sung to and looked pleased as punch…Then he got down to the business of eating his cake…with his brothers spurring him on and joining in.The phone rang and he had a nice little conversation with Mamie and Bonpapa 🙂 proudly announcing he was ‘seven’ (which he has only just learnt to say clearly)Cards were opened…and presents unwrapped…..all in mummy’s bed, because we could!!

Aaah, birthdays… I love them… Because I love celebrating life. Don’t you?!!!

>Tom likes it in bed…

7 Dec

…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…

>Great news for T21 in the UK

24 Nov

>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.

Diagnosis (Early Days #4)

26 Oct

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…

%d bloggers like this: