Author Archive
The no good, very bad day.
Last night the girl ate a big dinner.
Two lamb chops and all of her salad.
I should have known something wasn’t right.
Her appetite has been small for weeks now.
It didn’t click then.
Instead I celebrated the fact that she’d eaten a full meal.
Lactose free milk included.
At 4am she started to throw up and then
she couldn’t stop.
I should have just picked her up and gone straight to the hospital
but we were supposed to be seeing the immunologist,
who we have an appointment with once every six months
and who we were counting on to put a plan in place for these
abscesses-come-granulomas-come-lumpy things in Ivy’s chest.
At 9:08 we phoned the paed’s rooms.
He’d just taken in his first patient for the day but he called back by 10.
He said not to risk traveling to Sydney
and that if the girl was not keeping anything down by lunch time we should
present to A&E.
Of course she didn’t pick up.
By lunch time she was worse.
In fact she decided to totally drop her bundle
and her blood sugars at the same time while in a&e -
2.7
2.1
It was then they decided that a glucose bolus might be a good idea.
After six hours in emergency she was stable and ready for the ward.
Which is where I am now, writing this stuff out into the universe
while the girl sleeps and sleeps.
She’s full of hydrocortisone, antibiotics and fluid.
Lots of fluid.
They’re not sure what this is.
It could be gastro
It could be the abscesses which are red and hot and sore
It could be bacterial or viral
or it might be an adrenal issue -
or a combination of all of the above.
Maybe it’s another Ivy mystery illness.
Whatever.
I’m sad and worried and cross
and I have heart burn and a head ache from the stress
and I just want you all to know that today was crap.
There.
I said it.
Today was crap.
Disconnect.
I read a post a few weeks ago that said that you should disconnect from your online life and reconnect with your real life friends.
It was an interesting point of view
but when I read it I felt really angry.
The reason I went to the internet in the first place was because I felt isolated from people
and so I reached out into the land of cyber to find others who were like me
and for the first time in a long while, I felt as though I belonged somewhere.
I don’t know about other people but I find it difficult and stressful to make friends
and then when I do find someone I feel a connection with,
I find it equally hard to hang on to that friendship.
I lost a lot of friends when Will died.
Something about having a baby die drives people away by the hundreds.
It made me feel wary of the possibility of new people.
We had barely moved into our new home, when he died,
so there were not many friendships forged in stone.
I had a small group of four exceptional friends who worked through that time with me.
One, who I’d known for all of my adult life, was my rock.
One, who had a baby just three months younger, kept me going,
one, who never let me give up hope
and one who made me laugh and remember that life would go on and be worthwhile again.
The thing is, aside from the rock friend,
we hardly ever saw each other.
My rock lived next door and I depended on her night and day
and eventually I drove her away.
It’s okay – I know I did and she never blamed me for anything.
It just got too hard for the both of us.
Although none of them really knew the other they formed this tag team phone in.
It was great for me
but I guess, you can only give so much without receiving something in return before you get tired.
Sadly when the pair came into my life things changed again.
The thing with friends now is they find it hard to understand that life with an immune deficient child is difficult.
You can’t really plan
and going out makes me feel nervous.
Like I am doing something risky and wrong.
I’m not in a position to go out drinking
or go on an organised outing.
I have a couple of nice friends where we live now but I keep my distance because I have to.
Most of my friends who I would turn to for help now live too far away
or are online -
my internet community, where I can have a bad day
and it’s totally okay with at least one person out there.
I felt angry because the internet has been my crutch for a long time now.
I know I am dependant
but I also felt angry because some days there is nothing more I would like to do than to go out and have coffee and talk about
whatever it is that women discuss
and the truth is, that post hit a raw spot.
I miss real life sometimes.
Introducing Dash (Wordless Wednesday)
At Christmas time the kids presented me with this:
He has slipped into our lives and our hearts in true baby sausage dog style.
There has been a lot of this:
and this:
and even some of this:
Mostly though there’s just been this:
His name is Dash.
Dash Gordon – defender of our universe.
Playing along with Trish’s Aussie Wordless Wednesday.























