"No reading at the breakfast table"

Last week my husband was away preaching at a uni student conference. I dropped in for a visit to the conference one evening after work (when I say 'dropped in' I drove for an hour and a quarter to get there and was smashed for the next two days ... but hey, so not the point of this story!). As part of the series of talks on the resurrection, he was talking about this passage in Revelation 21:3-4. "And I heard a loud voice from the throne saying "Look!  God's dwelling place is now among the people, and he will dwell with them.  They will be his people, and God himself will be with them and be their God.  He will wipe every tear from their eyes.  There will be no more death or mourning or crying or pain, for the old order of things has passed away.'" (NIV) To expand his point he listed off all the sadness and pain that would be taken away in the new creation.  And then he ended the list with 'period pain'.   The 700 people in the ...

I’ve been asked a few times recently about whether or not I’m still writing a blog.  Well, yes.  I am.  Sort of.  I’m just sneaking in one last post for 2014. To end my year of less is more!  Partly I haven’t written because I've had a busy few months at work. But it’s also because I suspect I got a bit weary from oversharing. I feel so grateful for all the support and encouragement that I received from folks while we were struggling through our daughter’sillness .  But then I suddenly I didn’t want to talk about it anymore.  Not just online.  It just started to sound repetitive.  As things do with chronic illness.  We found a strategy to help her recover with her post-viral fatigue at the end of July.  It felt like some of the crisis/uncertainty lifted at this time.  But then the hard slog of just getting on with it kicked in.  She’s done well.  But we didn’t end the year with a great success...

Life leaves scars.  Sometimes they are big visible ones like the one left behind by my caesareans.  Sometimes they are big but leave an internal scar.  The scar of a miscarriage or a still-birth.  The loss of a close relative.  Those scars that over time you kind of get used to carrying around quietly in your heart.  The initial impact might gradually fade, but they're still there.  Part of who you are.  A remnant of your life story. This year has been a year that's left a scar on me.  I've experienced anxiety in ways that I've never felt before.  It's changed me.  I'm still processing how that kind of anxiety and stress has impacted on me.  I've appreciated paid employment in a way that's been new to me.  I understand now why people who are facing crises in their personal life will keep persevering with making it to work, because it provides structure and predictability and task completion. But like a caesarean s...

J has been singing more the past few weeks.  And drawing (that's her work above).  It's the small things that I realised had disappeared from her life during the six months of nothingness.  Her six months on the lounge.  The singing and creativity had been replaced by DVD box sets.  Theme tunes that I never, ever want to hear again, yet at the same time brought so much joy to her in the midst of unrelenting exhaustion. I've been exhausted this past month.  Thus the silence.  Part of the month has been having the flu, recovering from the flu.  I realised that I'm just mentally weary.  I've been keeping myself busy this past three months to get away from the consuming anxiety of a sick child.  Really busy.  I'm working hard at my job.  Lots of preparation at home.  But distractions only sustain for so long. J has been tracking a lot better.  I can feel the real hope of recovery in small changes.  She's been ...

This morning we clean forgot that #4 child needed to be at band at 7:15am.  We've only been taking a child to this band for, I don't know, like SIX years! I've forgotten a lot of things recently.  On Friday I forgot that I actually had one child at school (the primary kids were all at home for most of last week sick) and had to rush down to school and pick him up.  Why is my brain malfunctioning on basic routine-type stuff? I was pondering what was taking up my brain space instead.  This morning at 7:15am I was thinking about what time we needed to get J up so she could be ready in time for her half day at school.  I was thinking about whether or not she'd actually be well enough to get there.  I was thinking about what I might need to do to push her to get up and dressed.  I was thinking about how I'd cope if she started crying and complaining that she felt too tired (she always feels too tired).  I was thinking about what I could say that...

If you feel that you are up to speed with our tale, then you would be wrong. Last week our appointment at the children's hospital was great because it was the first time in six months that we had been given concrete direction on how to move forward. One of the steps in the plan was that we had to find a psychologist ourselves.  So I dutifully went along to our GP for a recommendation.  She called the first practice she could think of that would deal with adolescents. Turns out that Headspace actually run a fatigue clinic for adolescents in Camperdown that is affiliated with the University of New South Wales.  When I rang them to ask for an appointment and told them our story, they expressed surprise that Westmead even helps with fatigue because as far as they know, they, and UNSW, are the only organisations in Sydney that run official fatigue clinics. Amazingly there was an appointment slot free the following day which we took, even though we felt that we were...

After my post last week  about J's health, I've received a lot of messages from folks asking how the appointment went and what the outcome was.  Some of the messages were showing general concern but a number were also curious about what happened in the appointment and how they plan to manage J's fatigue. We met with a pediatrician and a psychologist for about an hour.  In that time they met the whole family, spent time talking to J alone and then they talked with Rowan and I alone.  What I appreciated about the appointment was that they were very straight with us.  They weren't critical and were in fact quite encouraging about different things we'd already tried (like waking her up before she'd naturally wake up, getting her to do a small amount of exercise each day). But they were very clear about what she has to do to get better and explained the plan to the whole family. They also said that some of her other symptoms (like sore knees, a sore tummy, hea...

Today I feel war weary.  Weary from the war of medical visits and doctor's opinions and rearranging our life to make it happen.  I feel weary from talking about it.  I feel weary from the anxiety and helplessness and the sense of failure.  I feel weary because hey, life is just tiring anyway isn't it? The good news is that I had two weeks off from that weary feeling.  It's definitely an environmental, circumstantial weariness.  Two weeks away at the beach, with good friends, lovely food that we mostly didn't cook, long bike rides, bush walks, sits on the beach, knitting, reading, sleeping, laughing with our kids. All the good stuff, the refreshing stuff of life.  J was happy to be out of the house, distracted by the other kids, even managed a few short walks. But as the time came closer to come home we could feel all the anxiety returning, the tensions, the stress, the uncertainty about what lies before us in the second half of our year of less. ...

Life has been a bit overwhelming recently.  It is hard to approach the end of another school term with a child who is still sick.  There have been moments when we've seen improvements, but they're only small. We're at the point where we're getting into a serious run of medical appointments and it is tiring organising them, chasing up people, working out how to fit it all in.  Trying to keep some vague sense of 'normal' for the rest of the family is hard.  Just getting along to the parent teacher interviews for five children over this past week on top of the usual stuff has felt tiring. Add into the mix a new bout of health problems for myself.   I wrote about this last year (read about it here ). I've had nine months pain free but then I've had the pain return more significantly over the past few months. This means a whole set of extra doctor's appointments, ultrasounds, specialist appointments, multiple phone calls and an ongoing uncertainty a...

We got rid of a lot of extra curricular's in January and so many times this year I have thanked God that I felt OK about making that decision before this crazy year had even started.  We're at the point where we feel so spent from the stress of coping with a sick child, that when yet another 'Great opportunity for our kids to SHINE!' gets announced at school, we want to weep (and sometimes do weep).  Getting the shopping done each week somehow feels like reaching Base Camp.  Getting kids to a concert feels like climbing the summit. What's been interesting to me is that the kids aren't complaining that they have less on.  They seem to find what I would consider the basic stuff - school, church, kid's club - makes their life quite rich.  Three of the five kids play a musical instrument - last year I had five kids doing either one or two instruments each.  A couple of them do a bit of sport.  We've had to say so many times this year 'Sorry kids, b...

Going out I proudly announce on Facebook that she is well enough to leave the house!  Yay! To visit her school friends!  She is so excited!  Is ready and dressed an hour before we are due to leave! I suggest I pick her up after two hours.  She starts crying because that feels like a babyish amount of time. So we negotiate (against all better judgement) that I'll pick her up after three hours.  I want her to spend time with her peers ('Important to not become isolated from peers' says Blog 1 on the blessed Interweb) but I'm so nervous about her getting tired ('Don't let them think they can do more than they're capable of' says Blog 2). I pick her up and I know it hasn't gone well.  I ask her how she is.  'Tired'.  What did you do?  'We had dinner, talked, played handball", ("HANDBALL?!!" I mentally shriek.  But Blog 3 said 'No exercise otherwise it will set them back').  'But not much handball - just a fe...

A precious moment of 'uprightness', a smile and outdoors Well, this is not at all what I had in mind when I started this year off in January! That's the problem with making bold declarations in public forums.  You can't even pretend it's what you had in mind! Not of course that having a chronically sick child is on anyone's radar.  It kind of just happens.  And there you are.  That family with the sickness.  Just an ordinary family.  Not doing anything particularly hopeless or anything particularly amazing.  And now increasingly desperate for answers, yet the answers seem so elusive. More elusive as time passes.  Elusive because your brain can't kind of keep track of all the different symptoms and ailments and appointments and tests.  It becomes more about what today's been like.  Or what the last doctor's appointment raised.  Over time it's hard to hold onto it all. Things haven't been going very well.  She's been o...

I've had a not so great year in 2013 with my health.  When I turned 40 all my 40+ friends kept saying 'just you wait Jenny, everything will start to go wrong now'.  I doubted them.  I'm not a particularly sickly person.  But they were very right.  I've had more niggly health problems in the last 12 months than ever before. But the last 5 months have been hard.  In January I had an excruciating bout of period pain at a level I hadn't experienced before.  I've always had shocking pain but this was different.  And pretty unmanageable. Since then it has got worse.  I had to take a day off work last month.  The month before that I almost left work early because I felt so bad. Pain in my gut that radiates up my back.  I spend 5 days hobbling around like an old lady, half bent over.  I become consumed by myself.  I become consumed by basic survival.  Get to work.  Do what I absolutely have to.  Come home. ...