Archive for April 2011
Things I know.
* School holidays are the best of times
and can also be the worst of times.
* Playdough is still fun,
even when you are almost fifteen
and especially when everyone fashions an insect island on the kitchen table.
* Playdough is not fun, however, when you have to clean it out of the kitchen table crevices
nor is it fun to pick out of the carpet pile when a small boy has mooshed it in with his boots.
* The smell of a bonfire reminds me of when I was a girl guide.
* It makes me want to cook damper and sing campfire songs.
* Everyone enjoys roasting marshmallows until they flame.
Especially small boys
and big boys
and grown men.
* I love this photo of Immy:
and this one of Lily with the small sausage dog:
* I also love the pinky purple hues of an Autumn sunset:
* Some days photography takes away all of the bad things
because it captures that instant of beautiful for you to keep forever.
* I know that these two make me laugh out loud every single day that they are on this earth
and that is very good for the soul.
* Breaking wind accidently when you bend over will always be funny.
More so when you are a five year old boy.
and that, according to the girl, medical tape is a very versatile commodity
and makes especially good boob tubes for Barbie.
*I know that all of these things (and more) make me happy.
This is the first time I have played along with Shae’s meme “Things I know”.
Cheese.
Noah: Hey Ivy! What do you call cheese that is not yours?
Ivy: I don’t know.
Noah: Nacho cheese! Do you get it Ivy? Naaah – chor cheese – Not. Your. Cheese.
Ivy: I get it Noah. I just don’t think it’s very funny.
Clearly having a joker for a brother displeases the girl greatly, some days.
Piggies
“Piglet sidled up to Pooh from behind, ‘Pooh’, he whispered
‘Yes, Piglet?’
‘Nothing’, said Piglet, taking Pooh’s paw ‘I just wanted to be sure of you’” ~ A.A. Milne.
The theme at I heart faces this week is pets.
Moon face.
I’ve had a few comments lately.
Especially after the last photos of Ivy were placed on the blog.
Concerns for Ivy’s weight and for her appearance
remarks about her double chin and her little body straining against her clothes
and they sting.
They hurt.
There are also people surrounding us,
who jeer.
People who can only see a ‘fat little pudding’.
People who don’t know,
or don’t care to.
I’ve had suggestions of diet change
and that I am feeding her too much.
That she is just simply fat.
Sage advice on making her exercise more often
and now I find that there are kids at school teasing my girl too.
I want to set the record straight.
I want them all to stop.
I want them to really look,
look properly at my chronically ill but devastatingly beautiful little girl.
I want them to see how painful this is for her
to hear the whisperings
to see others point and stare.
On top of everything else.
She knows she looks different.
She asks why.
It’s not right.
Ivy weighs 20 kilos.
She is 5 years old
but she is only 95 cm tall.
She is on 15 mg of prednisone a day.
That’s quite alot for a little girl and she has maintained that dose for almost three years.
When she is sick, her dose is doubled, often tripled
and she is often put on intravenous hydrocortisone too.
Prednisone has many side effects.
One of which is fluid retention and what looks to be rapid weight gain.
Another is growth suppression.
Another is a condition known as Moon Face.
This is where the face becomes noticeably round and loses its definition because of fluid retention in the facial tissue.
These are all side effects that Ivy has,
along with muscle weakness, decreased bone density, bleeding from her stomach and mood swings.
It’s hard for a little one to understand why her parents would consent to a medication that disfigures her once whispy little body.
It’s hard for me to wrap my head around it.
Without the prednisone though, Ivy blisters
and that is way more horrible than anything else.
It’s a case of the medication side effects being the lesser of two evils.
We have not set out to ‘make her fat’.
We would never want this for our child.
She dances once a week, when she is not in the hospital
and runs with the other kids when she can
but because of illness she is often tired and has little stamina.
She is on a gluten and lactose free diet and we try to keep her diet low in salt and sugar too.
We were told to encourage a diet higher in protein than a normal child’s diet
because this helps with food cravings and also prevents muscle wasting.
Ivy prefers fruit and vegetables to breads and meats
and doesn’t eat alot of junk.
When all is said and done
she is just a little girl
beautiful
emotional
and human
trying to make the most of what she has been given.
She shouldn’t need to worry about appearance too
because people are ignorant
and don’t take the time to stop and think.
Comments are closed on this one, guys.
Sorry.