Thursday, May 30, 2013


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Saturday, December 22, 2012

Of Jesus, Feminists and Chewing Your Food

Lately I have had a few links to articles come up on my Facebook feed.  Articles which tell me JESUS IS A FEMINIST!!  And yes, they get that excited about it.  To be honest, this disquiets me.

I love passionate people.  They are fantastic.  They get stuff done, they get super excited about their ideas and nobody has better debates and arguments than a passionate person.  However one thing I have discovered about passionate people, specifically passionate Christians, over the years is that sometimes their passion can eclipse the thing they are passionate about.  Then, sometimes, they begin to re-create Jesus in their image.  The scenario I have seen goes like this.  Christian discovers an aspect of Jesus, their faith and/or the Bible which revolutionises the way they see themselves and the people around them.  Christian gets passionate in the application of this insight and finds others with whom to share their conclusions and the resulting life changing impacts.  All good here so far.  This, however, is where it starts to get kooky.  Christian becomes so devoted to this new insight that they begin to paint Christ and Christian living as a caricature, placing emphasis on this newly discovered aspect and de-emphasising other aspects which balance or do not directly support their own soap-box issue.  Over time this can lead to recreating Christ in their mind.  Like those who love the law who oft quote James, but neglect to open Romans.  Like the Christian who seeks the emotional highs of worship and espouses Grace but avoids those parts of the Bible that may make them feel bad about their week-day choices.

The truth is, neither law and justice nor grace are absent from the nature of Christ.  The Bible speaks long and often about the terrible and unattainable beauty of the law being a refuge and a safe guard to those who love God - a light to our path.  Grace is beautiful.  Amazing in fact, even awesome - as in inspiring true awe within my soul.  Without it I would have no hope.  The more I learn about these aspects of Christ and the Bible and discern how they apply to my own life, the more I realise that they are in no way contradictory, but complementary.  In fact, without grace the law is terrible and frightening, without the law we do not understand our need of grace.  When I am presented with caricatures of Christ which emphasise either the Law or Grace I recognise the Jesus I know within the presentation.  By their very nature, caricatures take easily recognisable features of the one they are trying to portray and emphasise them.  However to stop at the caricature is to deprive yourself of knowing ALL of Jesus and to risk starting to recreate Him in your own image and begin worshiping yourself and your own ideas - labelling them as Jesus.  These are two big ideas about Jesus, but the same applies to other doctrines and insights.

This brings me to disquieting point #1:
When we apply emphasis to one aspect of Christ to the neglect of the other aspects of Christ and continue to do this long term, we risk missing who Christ really is.

There are many who would call me a feminist.

I believe in women's right to vote, to an education, to equal pay and equal rights under the law.  I personally support and spread knowledge of causes which defend women's rights and health such as the global outlawing of female circumcision, the provision of medical treatment for women suffering fistulas or prolapse in countries where they are neglected or treated as cursed, women's refuges to provide a haven for victims of domestic abuse.  I keep myself informed of the current statistics concerning the trafficking of women and girls and support the rehabilitation of sex workers and protect vulnerable girls in Thailand.  I think women, by nature, are powerful and influential - far more so than most actually grasp.  There are many, many other ways that I support, promote and protectively work toward rights and protection for women.

However there are many who would call me anti-feminist.

I do not agree with abortion, even in cases of incest, rape and (perhaps especially) handicap identified by prenatal testing.  Not an opinion I hold lightly.  I believe women should submit to their husband (one day I am going to write something about the definition of that word "submit" - it's interesting).  I believe men should hold most of the leadership positions in churches.  I no longer preach to mixed congregations as I do not feel that, as a woman, it is Biblically appropriate for me to do so unless under direct instruction from God.  I believe in taking reasonable responsibility for the sexual impact you can have on others in the context of dress and conduct.  I believe in saving sex for the marriage relationship.  Hang, there are plenty of feminists who would throw me out of the club for believing in MARRIAGE!

The thing is, feminist is a very loose term open to interpretation and what I mean when I use the term may be completely different to what you mean.  There is so much diversity within this label that perhaps they only unifying characteristic of feminists is that they believe in and are committed to defending`and promoting the rights of women.

In this broad definition of feminism, of COURSE Jesus was a feminist!  He treated women with respect.  They financially supported his ministry.  He specifically reached out to them.  The early Church had highly influential members who were women (Lydia, Priscilla, Tabitha - just to name a few).  Paul wrote in Galatians that men and women are one in Christ.  However, with a slippery, ill-defined label which is open to interpretation comes a whole lot of things which Jesus was not.  I believe great caution should be used with labels such as this.

Disquieting point #2:
"Feminist" is open to interpretation and is imprecise language therefore when applying this label indiscriminately to Christ, you are opening yourself, and Jesus, up to misinterpretation.

Another thing I have noticed within these JESUS IS A FEMINIST articles, there are often wild generalisations or outright inaccurate statements made.  Please note the irony of fact that the previous statement did, in fact, contain a wild generalisation.  The internet is a fabulous place with the exchange of ideas and thoughts made easier and more free than ever before  No longer does a writer have to go through the long process of editing and fact-checking in order to get their writing into a publication.  No longer does a person have to purchase a book or journal or newspaper to read the ideas of others or send an article via the mail system.  In a few simple clicks information can be shared and ideas explored.  But by the same token, misinformation and misinterpretation can be shared with a few simple clicks.

Source: via Jess on Pinterest

Don't get me wrong, I respect the intellectual courage it takes to put your ideas out there.  In my experience, inaccuracies often are not intentional.  In internet land, an idea is put forward with the preface "I wonder if..." then it is cut and pasted, but someone leaves off the "I wonder if..." part.  And it is quoted.  And it is quoted again.  And next thing you know there it is, gone viral across the internet.  An idea which is now a "fact" quoted in numerous places.  Ridiculously, in the age of the information super highway, fact checking is not all that easy.  Especially if you have to go to the second or third page of your google search (seriously, who does that aside from parents of kids with rare syndromes...).  Yes, writers need to be careful what they write.  They need to fact check.  They need to take their time and do their research.  However, as readers, we have a responsibility to think about what we are reading.  If a statement is being made that women were not allowed to learn about the Torah in Jesus time, yet we know that Mary, mother of Christ, paraphrased  Hannah's song from 1 Samuel - maybe we should think on that a bit.  If we are being told that women in Jesus time were not allowed to hold property or conduct business, yet we know that Lydia was a "seller of purple" and women financially supported Jesus ministry, perhaps we should take pause.  Perhaps the role and status of first century women was more complex and nuanced than it first appears.  I guess what I am saying is, reading with an open mind is not the same as reading with your brain in neutral.  Maybe there are more shades of meaning within an idea than may first appear.

Disquieting point #3:
People seem to be building whole doctrines and belief systems based on internet articles and books without reading critically, fact checking, examining the Scriptures or testing the spirit.

This is not to say that I don't believe Jesus was counter cultural in his treatment of women.  He clearly was .  And in his treatment of tax collectors, prostitutes, unclean women, adulterers, lepers, demon possessed, Gentiles, Samaritans, blind people, children, religious authorities, EVERYONE.  But Jesus wasn't some Ancient Palestinian hipster who was cool before it was cool.  He didn't have 21st century "enlightenment" in the first century.  He has ETERNAL enlightenment, always.  Can I be right out there and suggest that perhaps, if Jesus walked the earth today, his treatment of people would STILL be counter cultural?  I have this weird feeling that if today's feminists were to ask Jesus "are you for us, or for our enemies?" He would answer "Neither, I am for me"

Disquieting point #4:
Perhaps if we find Jesus always agreeing with us and never challenging us, we should check that we aren't just talking to ourselves.

I am going to come right out there and say that there are parts of the Bible that I do not completely understand.  I don't get why they are in there and I don't see how they apply to me and my life.  But I know that they are in there for a reason.  Over the years, my understanding of scripture has deepened and scriptures which baffled and confused me once are now beautiful to me.  Am I any more saved now that I have come to an understanding of those scriptures?  No.  Will I be any more saved when I understand the scriptures that now baffle me?  No.  So I am not afraid of my ignorance, but I am humbled by it.

I had a lecturer once who, at the start of the semester, told us that if we were uncomfortable with the idea of going to bed with questions and without a full understanding of things, we were to leave his class right then.  But if we were OK with not knowing all the answers and were able to trust that God has them, even when we don't - we were welcome to stay.  I think sometimes we are afraid to admit that we don't understand something.  Scriptures that don't fit with our understanding of God get dismissed as "culturally specific" or "for a time and place" rather than us standing back and admitting that we don't always fully understand God.  That is no shame, to admit that we don't fully understand God.  Given all of eternity, I will still be learning more about God.

Too often I am hearing and reading about Christians dismissing scriptures which do not fit with their personal understanding of God, rather than questioning either their interpretation of the scripture or their understanding of God.  The lauding of personal "revelation" over scripture is becoming insidious within the modern church.  Of course, we DO need to question the interpretation of scripture when it does not seem to fit with our knowledge of God.  For example, I once knew a Christian woman with a fabulous sense of humour and an effervescent, cheery disposition.  She could talk to anyone and when she laughed, which was often, it was usually loud and long.  Then she was confronted with this scripture

"You are too loud," she was told "you are not being what a woman of God should be."  I was young and did not have the words to put together why this felt so wrong to me.  But I watched this woman.  I watched her struggle to quiet her loud laughter and heard her laugh less and less often.  I watched her hold back from talking to people and withdraw from the sparkling conversation she used to bring to every room.  I watched her struggle to be quiet, and her spirit become more and more stormy.  I wish now I had the sense to simply pull out a dictionary and show her that "quiet" is not always the opposite to "loud".  Sometimes it is the opposite to "stormy".  I wish I had the courage then, to suggest that perhaps God wasn't talking about volume control, perhaps He created her to have a loud mouth and a quiet spirit.  This experience taught me that not only is it acceptable to challenge the understanding and application of scripture - sometimes it is our duty to do so.  I do, however, believe that we need to question the understanding of scripture, not dismiss it as irrelevant to our times.

There is nothing wrong with challenging our understanding of scripture.  There is nothing wrong with saying "I don't fully understand that bit yet".  There is nothing wrong with admitting that we still have questions.  There is something wrong with just never turning to that part of the Bible.  There is something wrong with dismissing certain scriptures that don't fit with our ideas as irrelevant.  There is something wrong with exalting our own understanding and "revelation" over what is written in the Bible.

Disquieting point #5
Like many enthusiastic supporters of a particular doctrine, some of those in the "JESUS WAS A FEMINIST" camp are selectively using scripture and/or trying to make scripture fit with their own ideas.  I believe our ideas need to fit with scripture.

So where does this leave us?  What am I driving at with all this?

Personally, I am uncomfortable with applying a political or ideological label to Jesus.  It smacks of trying to make Jesus like us, rather than make us like Jesus.  It leaves Christians and Jesus open to misinterpretation.  It feels like putting Jesus in a neat, 21st century package made palatable to the modern world.  A TV dinner Christ.  I get why people do it.  Labels are a way of using shorthand to communicate ideas.  Regardless of my objections, there are still going to be people who feel this label communicates what they want to say.  My hope in writing this is that readers, and perhaps some writers, will stop and think about what is being said and what it really means.  While I have written here primarily about the term "feminist" being applied to Jesus, what I am really concerned about is bigger than this.

We have become a consumerist society and all to often ideas and rhetoric are being swallowed without deep thought or questioning on the part of the consumer.  This has the power to significantly damage the Church, which is perhaps the most disquieting thought of all.  While I will continue to, at times, be uncomfortable with the thoughts and questions of others I am OK with that.  Being comfortable in this life has never been an objective of mine and if I am never being challenged to think, ask questions or put my thoughts and beliefs into words and action, that is a sad state of affairs for me.  But for crying out loud, brothers and sisters in Christ, please use the brains God gave you.  The conversations we are having among ourselves should be of a higher standard than those found out in the world.  Instead ideas are pushed out into cyberspace and either swallowed whole or outright rejected.  Does nobody chew any more?  Disputes seem to descend quickly into unlovely exchanges.  Instead of bearing the mark which is supposed to distinguish us to the world, a love for one another, personal attack and accusation seems to be the norm when Christians disagree.  This creates discord in the body of Christ, meaning we spend more time fighting each other than we do ministering to this hurting world.  It also means that we do not discuss and explore ideas rather accept or reject them without exploration.  This leaves us vulnerable to false doctrine and heresy.

I have a friend who once, in frustration, yelled at me "You think you're ALWAYS right!" my reply was "Of COURSE I think I'm always right.  If I thought I was wrong I would change my mind!  If you have evidence that I am wrong, tell me.  Then I will change my mind and be MORE right!".  Yes, she still speaks to me over a decade later.  I believe I am right on this feminist thing.  I would love it if people agreed with me on this and stopped using the word in the context of labelling Christ.  The likelihood of every Christian writer out there who does this reading a semi-retired Mummy Blog and agreeing with me is not huge.  Perhaps a more realistic aim is that one or two people will read this.  That they will really think and pray about what they believe.  And in the future, when they read or hear something, they will chew well before they swallow it.

Chew your doctrine well, it is good for the Body of Christ.

Friday, October 12, 2012

Where are we now...

I have been considering doing a post like this since Kaylee's birthday six weeks or so ago but have only now had time.  Well, not so much had time as made time.  And today is another anniversary.  A year ago today Kaylee almost died.  She was revived by the Medical Emergency Team.  She was navy blue.  I was too dazed to be scared.  The support we got through this blog when Kaylee was small was amazing and I can never thank my readers enough for the way they supported us.  In the end, maintaining the blog was overwhelming and when I started to have people write to me privately to tell me I shouldn't think or write certain things, when people told me I had an "obligation" to my readers to blog regularly and when people in our real life began to be offended by what I wrote, I knew it was time to step away from the blog.  It was a small minority, but for me this was enough for me to say "enough".  I will not be returning to blogging publicly about our lives however I do feel that I need to wrap things up a little better.  This Blog still gets visited in dribs and drabs - mostly by people googling Cornelia De Lange - and I know that some of our regular readers are curious.



She is downright ADORABLE.  Seriously, this kid is cute as a button.  Healthwise and development wise, as is Kaylee's style, she is complicated but today I would say "doing well".

Heart:  When her heart was repaired in March the surgery went very well.  Unfortunately, the valve on the pulmonary artery (the artery going from her heart to her lungs) had to be sacrificed so at the moment about 50% of the blood that gets pumped out of her heart toward her lungs actually refluxes back into her heart, needing to be double pumped.  Because of this, her heart is bigger than other children her size and/or age and as she grows it is likely that her heart will start to struggle to cope with this extra load.  At some point, and nobody can say if it is 2, 5, 10 or 15 years away, Kaylee will need to have her heart valve replaced which means another open heart surgery.  Unless there are some pretty big advances in technology in this time, Kaylee's valve will then need to be replaced every ten to fifteen years for the rest of her life.  Right now, however, it is doing great.  In fact, during a nasty chest infection earlier this year Kaylee's O2 levels were so good she didn't even need extra oxygen!

Stomach/feeding:  Kaylee's Fundoplication and PEG insertion was largely a success.  Kaylee no longer has reflux as severely and tolerates having food in her stomach.  I feed Kaylee mostly via her "special tummy button" which I connect a tube to and either syringe feed her or connect a feed pump.  Most days she has a go at eating orally - by which I mean I offer her some tastes of yoghurt or something on a spoon and/or some formula in a special sippy thingy.  Sometimes she takes a bit, sometimes she takes a lot (as in, 3 teaspoons or 20 mls), sometimes she is not interested, sometimes she puts it in her mouth, plays with it and then spits it out!  Some people ask me if she will ever eat "normally" or be able to get rid of the button.  The answer truly is maybe - but maybe not.  A side effect of the surgery is she cannot burp so she currently needs to be "burped" with me connecting a tube to her tum then using a 30ml syringe to release bubbles.  In fact, as I type now she is sitting on my knee and I am holding the syringe in my teeth.  If I do not do this when she needs it she will be in a whole lot of pain and also vomit - yes, she can't burp but she can vomit past the fundo!  Talented girl this one.  It is very likely that her stomach surgery will need to be repeated in the future which we knew before hand.  I don't like this as it is a very painful procedure (I would say more painful than her heart surgeries) but it is better than living with the daily pain of reflux and the risk that would pose to her lungs.  I am praying it will be a while off before we need to worry about this anyway.

Cleft:  Kaylee's soft palate cleft is not really a hassle for us right now.  We had a chat with the plastic surgeon and we all agreed that Kaylee has been through enough for now.  We are all tired and we are taking a break for a while from surgeries.  We will re-evaluate where we stand with this in six months.

Things to Watch:  Kaylee has something I like to call "funky monkey feet".  Her toes are curled and her instep curves her foot around suggesting that perhaps some tendons are a bit tighter than they should be.  We are still waiting for assessments to come in on this but our plan for now is to massage often, watch and wait.  When she starts to stand or walk we may look at something to strap on her little feet.    Kaylee's eyelids droop to the point that she sometimes has to tilt her head back to see things in front of her at eye level, so we will need this assessed too, to evaluate the effect on her vision and decide if an eye-lid lift is on the cards.  I kind of hope not.  Kaylee's kidneys have always been a little kooky (small and with cysts) but they are functioning normally.  We probably wouldn't even know about them if she hadn't had so many ultrasounds etc with her heart.  None the less, they are on the "things to watch list".

Milestones:  I have a love/hate relationship with milestones.  I love it when we get there, I love supporting Kaylee to get there - I hate it when people ask if she is doing things that are so not even on the horizon yet!  I suppose developmentally Kaylee is at about the stage of a four month old however she does not support any of her own weight on her legs when you hold her up, she kind of hangs there as if to say "yeah right!  Not today!".  She rolls from side to side from her back and somehow (nobody can work out how) manages to migrate around the floor by doing this but as far as we can work out Kaylee has no idea where she is going, she is just rocking and rollin'!  She can sit for short periods in a bumbo chair.  She can reach out and grasp things and usually shoves them in her mouth (especially if it is her feeding tube which she loves to chew, much to the annoyance of her mother!).  She has a brilliant smile and a unique laugh which is a bit of a gravelly honk.  She kind of grunts and honks and "sings" sometimes too.  She is all gums still which isn't unusual for kids with Cornelia De Lange.

Goals:   Right now we are working on helping Kaylee learn to sit, encouraging her roll, working on her upper body strength (she can't hold her self up with her hands if placed on her tummy leaving her in an uncomfortable face plant position!) and helping her to learn to eat something orally.  

Will she ever... When these words leave people's mouths about Kaylee, I never know what to answer.  The future is a big bundle of unknown.  Things could go super well.  She could need minimal surgeries in the future, her development could all of a sudden speed up and, if not catch up with her peers at least keep her somewhere in the ball park, she could suddenly start talking or walking or eating and doing a million other things.  Or she could start having seizures, aspirate, her lungs or heart could become compromised - Very Bad Things could happen.  Likely, the future will be somewhere in the middle of that.  With Kaylee, it is a matter of climb on for the ride.

The Other Kids:  Are brilliant.  They are amazing.  I am prouder of them every day.     

Me:  So how am I?  Honestly, most days I am trying to work that out still.  I look back at this blog sometimes to see what we were doing this time last year and it is almost surreal.  To be honest, I think I sugar coated a lot of things when I blogged without meaning to.  Frankly, it was hard to admit to myself how bad it was.  It really was harder than it looked, there was less support than I let on and it was scarier and more exhausting than I could ever convey.  I am happy and content now for the most part and in many ways I have a greater acceptance of Kaylee's diagnosis than many of the people who love Kaylee but don't live with her, because I understand those intangible bits of wonderful that she brings so much better than they do - I see the wonderful every day.

But I have been angry a lot of the past year too - and not always justifiably.  I have been angry at the loss of autonomy we have endured, being forced to make impossible choices and let go of dreams and plans that we had.  I have been angry at people whose own internal dramas and pain have caused them to make our lives - already impossibly difficult - harder.  I have been angry at people who have been all too willing to spout words on the internet but when it was possible to visit us or help us in a practical way, they were all of a sudden too busy.  I have been angry at people who tried to help with the best of intentions but because they did not first listen or ask, actually made our lives more difficult or placed us in an awkward position.  I have been angry at people who tried to tell us what to do or how to manage our lives.  I have been angry at people who simply stopped showing an interest in our lives once the "drama" stopped being blogged for their convenience on the internet.  I was angry at my own limitations.  Sometimes, I was just angry because being angry is easier than being scared, sad and hurting.  Sometimes there has been a big, complex ball of emotion inside me and I have not been able to separate anger from joy, happiness from sadness, frustration from relief - or anything else.  At times my anger and frustration has spilled out toward good people with good intentions who made innocent mistakes or whose good intentions did not work out.  I have done damage to relationships and have a lot of rebuilding to do.

My patience and reserves have been low.  I have found it hard at times to relate to my "ordinary" friends.  More than once I hung up from talking to someone about their breastfeeding trials and had a cry, remembering the hope I had that first time Kaylee tried to go on the breast, the ache I had as I cried for fifteen minutes before expressing  when she was six months old because I just didn't want to do it any more and the gut wrenching grief I experienced as I made the (right) decision to stop expressing when Kaylee was eight and a half months old and I was beyond exhausted....and knowing that this may well have been the conclusion to my journey of feeding my babies.  I do find it harder to be generous with myself to friends and family these days.  While Kaylee is healthy right now, her care is still demanding and exhausting and constant.  Several friends I have an agreement with that if I am not in a place to hear their tales of ordinary trials and triumphs, I just need to say and we will connect again later.  I am thankful for friends like this.

I get awfully frustrated with people who call me 'inspirational' and tell me they could never do what I do.  Firstly, I don't need those kind of expectations to live up to.  I don't find it encouraging, even though it is well meant.  Secondly, I find that people often say these things as a way to distance themselves.  Someone who is "inspirational" doesn't need help or encouragement or friendship or a listening ear.  Thirdly, some people seem to use this as an excuse to under achieve in their own life.  I have pushed myself to the limits of my endurance in the past year or so and let me tell you, they are further than you think.  It isn't because I was strong or special, it was because I simply got off my backside and did it.  I believe most people are stronger and more capable than they realise if only they get up and work at it.  Most of the time I take it as intended and realise people are trying to be encouraging but there is more than one person who I have had to simply ask to stop saying it.  One or two haven't listened, but for the most part people are indulgent if not understanding.

I have learned a lot about listening.  The most helpful to me have been the friends who simply asked then listened.  I have been blessed beyond measure by these people.  There are so many who just keep talking and talking to fill up any silence, so many who surged ahead to push assistance on me regardless of my feelings toward that assistance or how helpful it would actually be.  The golden few who truly served as balm to my soul simply listened.  At times prattled about their own lives and shared their beautiful ordinary and frustratingly ordinary with me - but when I needed it, just listened.  I hope I can listen like that to my friends when they need me.

Managing our medical and therapy staff has left me wishing I had about six different degrees and x-ray vision.  Turning up to a hospital means I will have to educate people about Kaylee's syndrome and condition which I don't mind terribly (I love med students and usually get at least half a dozen through if we are admitted - last time I had four in Emergency alone!) but there are days when it is hard.  Because it is not just the students that don't know about Kaylee's condition, it is the nurses and the interns and the registrars and the consultants.   The truth is, I have no access to any expert who knows everything there is to know about Kaylee's condition.  I can access heart specialists, plastics specialists, physio specialists, CdLS specialists and a million other specialists - however all of them are specialists in one aspect of Kaylee, not all of Kaylee - and all of them are very busy people.  I am constantly on duty if she is unwell and I have found myself having to second guess and question some very clever people simply because I know Kaylee better than they do.  Fighting red tape is a full time job.  Everywhere is under funded.  Because it wins more votes to launch a new program rather than improve funding for an old one, there are about a million different programs that could contribute to Kaylee's care and all of them are under funded and many have waiting lists that are hugely long.  However I have met some brilliant people with amazing knowledge and generosity of spirit and I thank God every day for so many of the nurses, doctors and specialists we work with.

Support groups are great, but the flip side is we always know of someone who is sick or fighting for their life and I have written more letters and messages of condolence in the last year than I ever have before - for beautiful, bright young people who have held a place in my heart.  But there are some things that nobody except parents of kids with special needs will understand.  They are in many ways a part of our family now.

We are slowly finding our new normal.  We have dreams of camping this summer.  We have some dear friends who drop us off a meal or two every now and then - which was a life saver recently when we were all taken out by an awful bug, Jon and I hit worst of all (Kaylee managed to avoid it by being on hefty doses of antibiotics already due to her chest infection!).  We have also hired  a friend to help keep us up to date with the laundry and cleaning once a fortnight which is so helpful.  Being that most of our family and a great many of our friends live far away there is little in the way of practical help for us so the ministry of this family is invaluable to us.

There are days when things hit me.  Earlier in the year Kaylee had her heart check up.  It was largely a tale of "nothing new, we will see you in 6 months" however it all of a sudden occurred to me that Kaylee will likely need heart surgery when she is an adult, and I am old.  A million "what ifs" could hatch out of that.  What if she doesn't understand?  Will she be as frightened as a little girl but in a woman's body?  If I am too old, who will advocate for her?  Take care of her?  There are a million what ifs and I could drive myself crazy if I try and travel each road before we take that turn.

Most days I soak myself in dimples.  In crazy hair and impossibly long eye lashes.  I watch her siblings play with her and dote on her.  And I realise that my blessings are really without number.  I live for each moment.

Yesterday was what it was, tomorrow will be what it will be but today is good.

Tuesday, June 05, 2012

Here on the other side...

Kaylee came through the surgery with flying colours.

She is sleeping peacefully.

I have already started trying to coordinate the half a dozen professionals who I want to speak to this week.  It will be a challenge to get them up here, but I will do my best.

I need coffee.

I need sleep.

And I need a whole heap of slack right now.

I am so thankful for the people who care about us and who put up with the crusty, abrasive parts of my personality (yes, I do know it is me and not you).  I ask that everyone just holds on for a while longer.  I anticipate a return to humanity in a month or two.  Right now, I am so crazy with busy and finding my feet and being there for my husband and kids I can hardly breathe.  I have had some lovely people try and extend their hand in friendship via the internet when they have read this blog and I am afraid I have not been in a place to grasp that hand right now.  I have some amazing and wonderful friends who are there for me and to be completely candid the thought of trying to bond with new people makes my poor introverted soul feel stretched beyond all reason. 

I maintained this blog with the idea that I would give my family and friends insight into what we were going through, that I would advocate for those in a similar position to us and I would provide a resource for other families going through similar experiences.  I have found it increasingly difficult to balance all those things.  To blog honestly and candidly means saying things that have worried, offended, angered and distressed people who I care about - especially those who recognised themselves on this blog or those who felt I should not feel/act a certain way.  To blog only the sanitary, "nice" bits is to completely short change, if not outright betray, those in a similar position to us.  After a few months of prayer and thought, I have decided to put this blog back on ice.  If I ever to return to writing it will be anonymously so I can be as candid as I like without hurting those I care about - but for the next few months I will be focusing on finding our new normal.  I want to thank, from the bottom of my feet (which is even lower than my heart) everyone who has read this blog, left comments of encouragement and/or whispered a prayer for Kaylee and our family.  We have been blessed abundantly.  I am so blessed I can scarcely comprehend it.

Thank you all.


Friday, May 18, 2012

Surgery date...

June 5.

Praying we will be ready, healthy and get this thing done.

Saturday, May 12, 2012

Poems by my big kids

Erin has a membership to the kids science club run by the CSIRO and gets the bi-monthly magazine.  The most recent one has a competition for kids to win a plush toy if they write a poem about the Kakapo - a critically endangered ground dwelling parrot from New Zealand.  Anyone who knows Billy will know that he has a strong adoration for plush toys!  So he and Erin have written the following poems with very little help from me (I asked Billy what rhymed with 'much' after he wrote the first two lines and he took it from there).  The result of many afternoons reading poetry over tea and biscuits I think!  A couple of the many reasons I am proud of my two big kids.

The Kakapo
By William “Billy “ Steven Guest (age 5)

The Kakapo is nice to me
I love him so very much
He hides in plants and things
He would be soft to touch
They take care of their chicks
They climb into trees with their claws
That is so very true
Until cats come with their paws

The Cute Kakapo
By Erin Guest (age 7)

The Kakapo is very cute
And it has a green feathery suit
Even though it’s a flightless bird
The male makes a boom that can always be heard
The kakapo is very nice
Until a cat comes up to slice
We should protect the kakapo
And so
We should keep our cats indoors
To keep mischief from their paws

Thursday, May 10, 2012

No news is good news

We finally got rid of the colds (or URTI's - upper respiratory tract infections.  Somewhere along the line I have started talking in acronyms)

We are waiting for our general surgeon to get back from holidays and give us a surgery dare he have a life!

There is sunshine.

There are dimples.

There are zoos.

Life  is beautiful.

And hopefully in a few weeks there will be substantially less vomit.

Friday, April 27, 2012

Why It's Rude to Stare

I sat in the foyer with my children waiting for Jon to talk the young girl at the counter into letting us in for free even though we left our membership card at home.  The kids prattled excitedly about the exhibits we were going to see in the science museum and the snacks I had packed in our bag. 

A little girl, about six maybe, ran up to the pram and peered in to see the baby.

Her jaw dropped and her eyes almost bulged as she stared at the tube coming out of Kaylee's nose.

I could see this yellow tube and the white tape fixing it in place had all but eclipsed the pink cheeks, long lashes, dark hair and pink bow in her mind - she didn't notice the baby, just the tube.

Her eyes oogled at the small bundle wrapped in the pink blanket against the cold of the blustery, wet autumn day.  She followed the tube to it's source, the purple pump and the bottle hanging upside down.

There was no question asked, no comment .... just staring.

After many minutes she was called away by her family who were leaving the museum and turned, without a word.  Not even acknowledging the existence of the family and the baby behind the tube.

Later that afternoon a little boy, perhaps four, looked in the pram.  He looked at me and asked what the matter was with her nose.  I knelt down and explained that Kaylee was born a bit sick and can't eat with her mouth so she has a very special way to get her food through this tube right down into her tummy.

"Uhhuh" he said

then ran away to play on the interactive exhibit with the other kids.

And that is why I teach my children not to stare.

Thursday, April 19, 2012

The techie stuff and frequently asked questions

What is a fundoplication and why does Kaylee need it?

In the context of Kaylee, a fundoplication is a surgery to prevent reflux.  The valve where Kaylee's stomach and oesophagus join does not work very well..  Even though no food goes into Kaylee's stomach, she still almost always has gastric juices travelling up - and occasionally out - where they shouldn't.  This is called severe Gastro-Oesophageal Reflux Disease. Two things make Kaylee a candidate for this surgery.  The first is that her reflux is extreme.  The simple act of laying flat on the floor or having food in her stomach will likely cause here extreme discomfort and put her at risk of aspirating (breathing in vomit).  Vomit in the lungs is not great.   It effectively starts digesting the lungs.  A lot of it could cause pneumonia and irreversible damage to the lungs - thankfully this hasn't happened yet.  In small amounts (which Kaylee has almost certainly got happening every day) it can start to damage and break down lung tissue, raising the likelihood of lung disease and long term issues such as asthma, lung infections, pneumonia etc.  Long term reflux can also do some pretty serious damage to the oesophagus, teeth and general health and well being.  The second thing that makes Kaylee a candidate for this surgery is the fact that she has Cornelia De Lange Syndrome.  Unlike most typical babies who suffer from severe reflux, most people who have this syndrome do not grow out of their severe reflux.  Of all the issues associated with this syndrome, reflux is one of the most common and one of the most life altering of them all.  Because of her reflux Kaylee cannot do many of the things that other babies her age do (tummy time, rolling around the floor etc.).  Her reflux is also why she is fed using a naso-jejunal tube which I pretty much hate with a passion.

The surgery itself involves taking the top part of the stomach and wrapping it behind and accross in front of where the oesophagus joins the stomach and stitching it in place so the stomach effectively wraps around the oesophagus.  This closes up the opening somewhat and prevents reflux.  Kaylee should be able to have food in her stomach without fear of aspirating.  She should still be able to swallow and I believe this surgery will better her chances of learning to eat "normally".  It is a tough recovery, by all reports, and the week or so following is likely to be very un-fun however I will not be listening to her cough and wondering if she has aspirated or suctioning out her nose every ten to twenty minutes as she vomits on and off from 5am - 7am anymore.

What is a gastronomy and why does Kaylee need it?

All her life Kaylee has been fed using a feeding tube of some sort.  Currently she is fed via an NJ tube.  I go more into the details of this here, but basically it is a tube that goes through her nose, down her throat and through her stomach into her small intestines. A tube through the nose brings its own set of problems.  And it is a pretty long list actually.  Everything from the trauma of pulling tubes and having to have them reinserted (try shoving something up your nose and down your throat while you gag and vomit....Yeah, that would be one of the problems) to issues of tape irritating skin etc.  Kaylee is unlikely to start feeding orally in the very near future.  Not enough to sustain her anyway.  There are a lot of hurdles to cross before she will be taking in all her fluids, food and medication orally and there is no way to predict how long this will take or even IF she ever will take in enough food and drink through her mouth to sustain her.  So this surgery will make a hole through the wall of the tummy into the stomach which we will insert a feeding tube into.  It will sort of heal and form a hole we can put tubes in and out of the same way an ear piercing heals and earrings can be taken in and out painlessly.  It will also be used to help her "burp" if the fundoplication is too tight and she has trouble burping up air.  While a tummy tube does have its own list of issues, the list is much shorter than the list of negatives that goes with nasal tubes.  Without a tube, Kaylee would not survive.  A tummy tube has the fewest negatives and the most positives.  We are getting the tummy tube.  A nice added side bonus is the fact that Kaylee will no longer have anything taped to her face and we will be able to fly under the radar a little more and I will be able to kiss both those chubby cheeks without fear of dislodging anything.

When will it happen?
Whenever we get her healthy from this cold and they have a gap in the surgery schedule.  We are thinking a couple of weeks at this stage

What are you going to do in the meantime?
We are currently staying with friends in the Melbourne area.  While I have no desire whatsoever to move permanently away from Tassie,  it is a good feeling to be so close to one of the top paediatric hospitals in the world at the moment.  Staying here with our friends has also been a time of rest and healing for us.  Simply knowing that if we need to take Kaylee to hospital, there is someone RIGHT HERE to watch the others is a great weight off our shoulders.  Bek and Shane have been our friends so long they are family and we have been blessed SO much by their hospitality.  We are re-evaluating as we go and after the tummy surgery is done we will make a decision about having the cleft surgery done here or going home to Tassie for that one.  We are taking advantage of the zoos, museums etc. while we are here (when the kids are up to it!) and having a bit of a holiday in between surgeries.  The kids have their school work with them and we believe it is better for them to be settled and all of us to be near each other than to pack all of us around to the different hospitals or have Kaylee and I leave for days and weeks at a time at random intervals.  Home really is where the herd is!

Friday, April 06, 2012

The next step

Over the last fortnight, I have unpacked our friends house.

When we came to stay they had been here only a short time so there were boxes everywhere.  I threw myself in with abandon.  Every box has been opened, every book shelved, every ornament dusted and a place found for it, every item of Tupperware paired with its lid.  I ran out of shelf space for the books so bought myself a bookshelf for my birthday so I could keep going.

As I sit here I have an immense sense of satisfaction.

I never used to be like this.

I never used to clean when stressed.

But somewhere along the way I started cleaning parent rooms in the hospital at midnight.

I think it's because I feel like I am falling.

I like control.

I like being able to predict what will happen next.

I like knowing my options and choosing what to do next.

I sorta, kinda, little bit know what is going to happen next in the same way that a skydiver knows that the ground will be intimately involved in what happens way or another.

Kaylee's general surgery review will be on the 11th of this month.  At this appointment, I will find out if Kaylee's tummy surgery will  go ahead and what timeline we will be looking at.  But with these answers, as with most answers I get these days, come a million more questions.  Will we stay here with our friends close to the hospital until Kaylee's surgery or go home to Tassie?  What button (the type of feed tube placed through Kaylee's tummy) options do we have down the track and how/when/where will we be dealing with changes to the type of button?  There are several ways the fundoplication (part of the surgery where they wrap some of the stomach around the bottom of the oesophagus to close it off a bit) can go wrong, how will we deal with it if some of the more common complications occur?  How long are we likely to need to stay around Victoria?   Who will be our go-to person for tube management once we leave the hospital?  What about when we go home to Tassie?  What will we be doing about her feeding orally and when?  Who will be involved in those types of decisions long term?  When/where/under what circumstances will we have her fundo assessed down the road?

And on and on and on and on....

And like a cartoon coyote putting up an umbrella while plummeting off a cliff, I shelve books to carve some sort of order out of the chaos that my life has become.

Early in the morning, I go for a walk by the bay.

To exercise, to get a few moments of solitude before plunging into life in a household of 14 (4 adults, 10 kids under 8 - sometimes we feel a little outnumbered), sometimes to cry and always, always to pray.

The other morning I was so tired I could hardly move but I walked by the bay and watched the sun come up, the birds wake up and start their day and the earth take a deep breath to start the day.  I sat on an old concrete cylinder in the sand among the grasses and succulents, my whole body drooping with weariness and I cried.

I told God that I do NOT want to know if this surgery will be the answer we are looking for.  I don't want to know if Kaylee will walk, talk, live independently.  I do not want to know if my other kids will handle their sister's disability with grace.  I do not want to know how my marriage will weather this storm.  I don't want to know about medical staff, therapies, where we are going to live, what we are going to do.  I don't want to know any of it.  The knowledge I have is already far too heavy for me to carry.  I want to skip all of it anyway.

All I want to know, all I want to see, is my family in heaven.

Kaylee chowing down on the fruit of life before running by the river with her brothers and sisters.

Watching them with my husband.

All the crap, vomit, blood, pain, heartbreak.........gone.

I want to skip to the end.

I looked down and saw hundreds of small shells.

I thought absently that I should gather some up to teach the kids about the Fibonacci sequence.

I don't even know what numbers are involved in the Fibonacci sequence.

And God said "I do"


"You don't always know the math of what I do.  You don't always understand where I am going.  You don't know the end result.  But I got your back.  Like the snail that never sees its own shell and the butterfly never sees the beauty of its wings - you don't see the pattern I am making in your life right now.  But trust me, the math works out.  And one day there will be no more crap, sweat, blood, tears, pain, therapy, doctors, red tape, vomit, needles, drugs... one day it will be beautiful."

"You are tired?  Rest in me.  Is your load heavy?  Give it to me.  Are you worried?  Trust me."

So I will keep doing what I can about the things I can do something about.

I will keep moving forward.

I will take the next step, even when it involves stepping off a cliff.

And I will leave the math up to God.

(by the way, I looked it up.  The Fibonacci sequence 1, 1, 2, 3, 5, 8, 13… Each number is the previous two added up. The ratio of two consecutive numbers approaches 1.6180…, or (1+Sqrt(5))/2, which is called the Golden Ratio.  It's brilliant)