The first is that God made it,
The second is that God loves it,
The third is that God keeps it.

JULIAN OF NORWICH (1342 - 1416)

NEWSFLASH

Louie is sitting un-supported for minutes at a time – how proud are we?

Louie is exactly 6 months today & he has gone from strength to strength throughout the day. His sister was sitting at 6 & a half months & his brother at 5 & a half months. Louie’s definitely giving them a run for their money!

We are delighted – that’s our boy!

Mummy – 16^th March 2008

Why Again?

A while ago Daddy was asking himself why we had set up this blog spot – well if we can help others through our own experiences & emotions, like others have helped us, then Louie’s life is even more valuable, special and worth every second.

I know this blog spot has been visited by Mums expecting babies with Downs, & by parents of children with Downs, so we hope that our story will help them too.

Thank you to those who have helped us by sharing their experiences.

Mummy - March 11^th 2008

Wobbly Days

Years ago I was shoved on one of a number of courses at work (much to my then annoyance!). But my goodness, what I learnt has continuously stood me in good stead. One such course introduced me to the following 3 points;

What’s the worse that can happen?

Prepare to accept this.

Now try to improve on it.

How many times have I thought of these 3 points as I ponder the future with our little man?

If I were to believe the books, there is an endless list of things that a baby born with Downs may have, develop, or die of. Some of these have already been ruled out, some have not. Louie may well develop some of these conditions as he grows up. He also may not.

Fact - Louie will look a little bit different…………..and so far, that’s the only fact we have.

Again, if the books are anything to go by, there may be heart problems, thyroid problems, eye problems, lung & respiratory problems, prone to infection, glue ear, obesity, teeth & gum problems, poor muscle tone, dry skin, leukemia, early aging, infertility, behavior & psychological problems, mental disabilities, slow learning skills, hospital trips, doctor appointments…………blah, blah, blah. I write this list with a very cynical tone!

So what is the worse that can happen? I don’t entirely know. But what I do know is that I love our boy so very, very much, that whatever happens, I will deal with it. As Daddy says, I can do this, we can do this.

Have I accepted the fact that Louie has Downs? Possibly, possibly not. More possibly than not, definitely!

Sometimes I will look at Louie & there is still that feeling of sorrow, but not the deep sorrow that was. As I look at him face on, I wouldn’t know he has Downs.

As I look at his profile, the flat back of Louie’s head and his eyes show the classic signs. Just sometimes, my heart aches for him.

What I have accepted is that possibly, in older age, our boy may still be living with us & dependant upon us. Unlike our other two, we may not be able to shove him off when he reaches his 20’s and starts eating us out of house & home! (I jest of course!)

In actual fact, his company as we get older will be nice – and this is one of my first steps of trying to improve on things –looking to the future positively.

It is more probable than not, that Louie will have learning disabilities. Louie’s pace will probably be considerably slower than that of a typical child. He may also have communication problems.

Sometimes this seems hard to accept, when as a 5 month old baby, he is doing everything a typical baby would do. I’m not sure I have this image of the future quite sorted yet – my boy, talking in a disabled way, not being able to make himself understood, possibly having to go to a non-mainstream school to receive extra one to one teaching – Hmmm.

But is this not me preparing to accept the worse? After all, none of this as yet, is fact.

So, am I improving on this?

Well, I am using alphabet flash cards to teach Louie phonics and letter sounds already.

There’s the Makaton signing I have already talked about in ‘Mummy’s Story’ below. We have a daily story time with Louie’s brother & sister. I play children’s songs & audio books throughout the day and I am constantly chattering to Louie about absolutely any old twaddle I can possibly think of

Surely some of this will be slowly sinking in and helping to improve on the communication situation?

I’d like to think so.

Of course I still have my wobbly days. Days when I’m just plain scared of the future. Will Louie cope? Will Louie’s brother & sister cope? Will we cope? Will I cope? How will family who don’t see Louie regularly cope? How will I react when I have my first brush with society – when someone stares at my boy?

How will I find going to places where there are groups of children/adults with Downs or other form of disabilities? It really is a whole new world, and sometimes it’s a bit scary. It’s a whole lot scary really.

I found a toddler group for children with Downs, which I visited when Louie was only about 7 weeks old. I couldn’t have gone if I hadn’t taken a dear friend with me for support though. I was overwhelmed by the range of disabilities the children had. It was difficult looking from Louie at 7 weeks of age to some of the older children, and thinking that could be my boy in a year or so. I met some really lovely Mums at this toddler group – Mums in their 20’s, 30’s & 40’s, Mums who, like me, still have wobbly days too.

I’ve also been introduced to a group nearer to where we live, for pre school children with additional support needs. Louie & I will make our first visit here after the Easter holidays.

I am amazed at how many children & adults there are out here that have Downs. Why don’t I see them when I walk down the road? Why do I only see typical children & adults?

Where do we all hide and why?

I pondered above on how I would react should someone stare at my boy – I might stare back, I might challenge those who stare or I might just burst into tears. But one thing is for sure, Louie has every right to be here. He will not be hidden away. I will not hide away with him. We will walk proud, we will walk tall, we will look back at those who stare; but so help me God if anyone should hurt my boy emotionally or otherwise……………………..

I am fiercely proud of all my children. I am extremely honored to be their Mum. I am humbled by how lucky I am.

Mummy - March 10^th 2008

Mummy’s Poem of Strength

Remember what is most important -

It’s not having everything go right;

It’s facing whatever goes wrong.

It’s not being without fear;

It’s having the determination to go on in spite of it.

Remember that every day ends and brings a new tomorrow.

Love what you do,

Do the best you can,

And remember how much you are loved.

Written by Vickie Worsham, and sent to me by Louie’s Grandad.

Louie’s Progress – To 6 Months

Our little boy continues to amaze us – he is standing up for great lengths of time, he’s always smiling, he rarely cries unless trying to settle himself back to sleep and he’s just starting to get his balance when sitting unsupported. What an amazing little wonder he is.

I started him on solids at five & a half weeks – baby rice, carrot, courgette, potato, pear & apple so far. This all seems to be going down well, with the number of spoonfuls increasing as each day goes by. He now weighs nearly 13lb – below average compared to a typical baby, but well within the guidelines for a baby with Downs. (Babies, children & adults with Downs, tend to be smaller and lighter in weight than typical babies, children & adults)

Louie settles at 7pm after his bath & feed & goes right through to 4am. Then he awakes & quietly rummages around in his cot, signifying to me that it’s time to get the milk bar open!

No crying or demanding to be fed, just politely lets me know he’s ready for a smackeral!

He is babbling away just as any other baby would – lots of Doy Doy Doys & Ba, Ba, Bas!!! Lots of focus from me on practicing Mum, Mum, Mums & Dad, Dad, Dads!

Health wise he’s had his share of the usual coughs & colds and has had 2 courses of antibiotics to clear a persistent chest infection

Aside from his weight being lighter, the only other difference I am noticing compared to Louie’s brother & sister is his upper body strength. Louie’s not yet pushing himself up very far when lying on his tummy. Daddy says that Louie’s brother & sister were more vocal at this age too, so maybe just a few small & currently insignificant differences are starting to show.

What is important though, is that Louie continues to be our very happy, contented & healthy little baby boy.

Mummy - March 10^th 2008