Monday, June 14, 2010

June 14, 2010

Hi folks. Not much news really - just thought it had been a while
since I last posted.
We still have no news on our next appointment at the hospital, and are
still quite concerned to know how big a problem we're dealing with.
I've been Googling madly (I know - never a good idea) and I'm pretty
confused, as 119bpm in a child of Charlie's age seems to be still
within the normal range - albeit at the top end of normal. Many of the
sites said that Charlie's heart rate would have had to have been
faster than 133bpm to be classed as tachycardia - but what do I know?
I'm just clutching at straws, hoping and praying that this isn't going
to be a big issue.
Needless to say, I've been taking Charlie's pulse regularly and it
normally sits high 90s/low 100s, so at least this fast heartrate only
seems to be intermittent.
We seem to be developing quite a collection of intermittent rate
problems with Charlie's heart - before his pacemaker it was too slow.
Now it's too high.
The only certainty at the moment is that my blood pressure is
permanently through the roof!
Stupid heartrate notwithstanding, Charlie is well and wonderful. He is
pink, energetic and full of fun. He's loving school and continues to
do really well.
Preparations are afoot for his end-of-term presentation, and he can
hardly wait to show off his new-found running skills on Sports Day.
Charlie's always had a pretty enquiring mind, but he's really starting
to ask some complicated questions now - he was grilling me about
infrared light the other day (and quite frankly, I have no idea how
infrared technology works...)
He's also still really interested in health and the human body - last
night I had to explain what high lung pressures are, and why they make
it difficult for some heart children to have Fontan surgeries, and
where transplanted organs come from.
Then he wanted to know all about mental illness after he watched a Dr
Who episode about Van Gogh... and tonight's big question was why
medicines are tested on animals.
Honestly - it's like permanently living inside an episode of
University Challenge.
I've always believed in answering a child's questions when they ask
them - even the tricky ones - but if didn't have my iPhone permanently
glued to my hand, with instant access to the net, I'd never be able to
answer all Charlie's questions!
Pete was away most of last week, and is away again for most of this
week too. We both know him being away so much is a necessary evil with
his job, but Charlie and I miss him lots when he's not here. It's
particularly hard being away from each other when life is busy and
It's my dad's birthday on Friday. He'd have been 80. I'd normally have
been putting the finishing touches to his birthday present, as well as
his Father's Day present. His birthday was always around Father's Day
- some years they were both on the same day - and this middle week of
June feels strangely empty without all the preparations for his
special days.
I hate the fact that I'm ordering flowers for him this year, rather
than scouring the shops for gadgets, tools and computer essentials
he'd like.
I remember buying his birthday card last year. I stood for ages in
front of the racks, trying to find the perfect card, while trying not
to cry. All the verses seemed to have deeper meanings - knowing, as I
did, that Dad was so poorly.
I'd give anything to be able to buy him one this year.
I miss him so much - but I still sometimes forget, just for a moment,
that he's not here any more.
He gave me an electric screwdriver ages ago - it was a spare he didn't
need any more. It has been sitting in our garage since then, but I got
it out last weekend and charged it up so I could fix a bracket on
Charlie's bed. After I'd finished the job, I was putting my tools
away, and thought to myself 'I must give Dad a ring to tell him I've
finally used his screwdriver!'
My hand was halfway to my pocket to fetch my phone before I remembered
I couldn't.
It's the little things like that which hurt the most. The small stuff
- the things I want to show him or tell him, the little presents I
know he'd like, the discovery of an old pencil of his in my toolbox.
I miss him such a lot.
I always will.

Sent from my iPhone


cici said...

I am so sorry you have to go through all this turmoil. Losing a loved one is so hard. I do know that he is watching over Charlie now, so that is a good thing. I hope Charlies little heartbeats improves and you can relax.
I am praying for you mommy.

Anonymous said...

your dad would have been looking down smiling and saying "you've finally got round to using it"! Sending you loads of love and strength and fingers permanently crossed for chaz xxx kelly