The Adoration of the Christ Child

The Adoration of the Christ Child
See if you can spot why I like this image

Everything in its Right Place

A blog about disability, life, parenting, and learning what it means to live well in this world.

Monday, June 27, 2011

Bright spots

Adam got out for a break from the yesterday, so we all went home for some lunch (his second lunch, gotta love those steroids!!) and then went down to the beach for an ice cream and a short play on the swings. It was so mild, and so much fun...

So NOT what I thought this whole thing was going to be. I realise we're only one week in and things will get much tougher yet, but it's good to know--and good to share--that there are still moments to enjoy and laugh despite the enormity of the situation. Adam is still Adam, and the nurses are learning to keep their scissors out of reach or he'll grab them and throw them across the room faster than you can say "health and safety"! And at least one nurse has been on the receiving end of a friendly slap on the backside as he walked past--no matter how bad he might feel, there is evidently no reason to miss out on a butt-slap in Adam's opinion! :)

Here is a picture of Adam on his favourite swings, and the top one is him having a visit from some friends from his school. You can see his smile hasn't changed at all either!
Famous wings!

Sunday, June 19, 2011

The next adventure

Ah, I so hate what I am about to say... Adam is in hospital again, this time for a long time. This time is not a burn, or a heart op, or a bout of pneumonia, all of which he's had in the last 7 years. This time is much worse.

Yesterday Adam was diagnosed with Acute Lymphoblastic Leukaemia. It follows a period of several weeks that he's been having pain in his hips and frequent infections, but it was not what we expected to hear. And yet, we always knew that there was a risk, as up to 10% of children with Down Syndrome also have Leukaemia. The treatment is intense, with the most intensive part lasting the next 6 to 8 months and the total treatment probably the next three years. Yikes. I can't even comprehend the next week, let alone the next three years, let alone isolation, hair loss, sickness, chemotherapy, high risk of serious infection, missing school, etc.

We have had so much support from friends and family already that somehow I know, no matter what, we are blessed and we will come through this. How life will look three years from now I don't know, but that is not what matters. What matters is that today was good, today he laughed with his brother and sister, today he enjoyed watching Mr Tumble on his very own portable DVD player, today he said something unintelligible that had an obvious meaning to him, and it's my deepest desire to find out what it is!

I will keep writing as much as I can about Adam's new journey, and will post pictures where I can along the way. Adam is a star, and I am grateful for his strength and ability to focus on the present and will try to do the same myself.

Thursday, June 2, 2011

One of those days...

As my husband would say, I frequently have "one of those days". Today, however, was one of those days--the kind I'm not too familiar with, the kind I am learning to be really grateful for when they happen and not worry about when they don't...the good kind!

I don't mean to say my life is bad, not at all. It's just that normally life is not quite so peaceful all day, normally the baby doesn't sleep when she should and go to bed without much fuss, and normally the sun doesn't shine in Aberdeen and blast out 75 degree heat! But today it all happened, and this is how it looked:

Tractor play, paddling pool, gardening (what I was doing before I took the photo) and enjoying the lovely flowers...all ingredients for a fabulous afternoon with the kids. As you can see, the garden is a very conducive place for relaxing and creative engagement, good for the kids, good for me.

I realise I haven't even written about the move or the new house yet, but anyone who has moved knows how snowed under you get by details and the sheer weight of boxes and stuff to sort out. I'm nearly there though, enough to drop it all and go outside on the warmest day of the year so far. It's really a wonderful place for us, as this picture can testify.

The bathtub is another great plus, but I won't be posting any pictures of us in there! (though we all have gotten in together a few times so far it has to be said!)

More pics and details soon...maybe when the rain returns!