Friday, December 6, 2013

Dreaming dreams

I didn't have any dreams for Kaylee before she was born.  Not detailed ones anyway.  I didn't have dreams for any of my children.  I always thought it was their job to dream, and my job to help their dreams come true.  From the time Erin, my oldest, was little she has been obsessed with all things science and medical.  She has a great aptitude for math and science and an insatiable curiosity.  For years we have cultivated this love with books, experiences, play opportunities, science kits.  Do you know what she wants to be when she grows up now?  A hairdresser.  So now we are getting books about braiding, hairbrushes and combs, hair ties etc.  Will she stay with this dream?  I don't know.  I don't think so - largely based on the fact that she is actually pretty bad at it and only has the patience to sit and fiddle with hair for about 30 seconds at the most before she gets bored with it.  But it is not my job to dream dreams for her.  It is my job to help her make her dreams come true.  To help her gather skills and knowledge, to give her opportunities, to cheer her on and give her a soft place to fall, to help her put herself back together again enough to dream new dreams and try again.

I was watching Kaylee sleep tonight.  What does she dream?  What does she want?  Right now, I think she wants to jump on the trampoline.  I think she wants to stand up.  I think she wants to walk and run and ride a bike.

These are big dreams.  They will be years in the making.

Every day I help her work her muscles.  I encourage her, I catch her when she falls, I pick the brains of experts and take her to specialists and therapists.  It will take time, it will take effort, but she will get there - I don't doubt that for a second.

What then?  I don't know.  I just keep listening and watching, waiting for her to tell me her dreams.

My dreams, when I am sleeping, involve chasing specialists and doctors.  In my sleep, the other night I argued with specialists and demanded they tell me in detail, using diagrams if necessary, why the surgery they were recommending was needed and how it would help her.  My dreams are of paperwork (yes, really),  my dreams are of pain, my dreams are of meetings and appointments and the gut wrenching fear that I will miss something.  That because of some omission on my part, some argument I haven't had, some order I didn't question - her dreams won't come true.  My dreams are of hospitals and Big Bad Things.  My dreams are still nightmares.  My dreams are far too small for my remarkable little girl.

I look at her face, I see her determination, I see her.

And I know that it is wise that she is the one to do the dreaming.

Because she will dream bigger than I could even imagine.

Saturday, September 7, 2013

Two years ago tomorrow...

...we got on this crazy roller coaster called special needs parenting.

There were three precious hours where we got to get to know our girl before hospitals, blue babies, tubes, wires and air ambulances.  The roller coaster started with a jolt.

It's a tough gig, the whole medically-fragile-special-needs thing.  Don't get me wrong, I know things could be far, far worse.  Each day all of my kids can breathe without equipment to help them, each day that I wake up knowing each of my kids are safe at home, each day my kids can move their own limbs - I am thankful.  But it's still tough.  This past 8 weeks the kids have been passing around a cough that Kaylee picked up when we were at the hospital for a check up.  For most of those 8 weeks I have been deciding between staying at home, seeing the GP or heading in to the hospital.  I have been fiddling with feed rates and drugs and venting.  I have been praying I would make the right call here.  We have fought pneumonia before and kicked its backside well and truly - but each new battle carries new risks and those precious airways I have fought so hard to keep clear for the  past two years, I don't want to risk them by making a wrong call.

I am tired, in every way possible I am tired, and we still have a lifetime to go.

But in the midst of the tired, the hard, the hurt, the sad, the tubes, the wires, the drugs, the feed rates, the risk assessment, the therapies, the doctors, the procedures - there is Christmas.

And hilarious purple hippos

and beautiful new friends

And smiles

and big brothers and sisters (who can never get it together for a good group photo)
and deliciously long eyelashes
and pretty red dresses
and impromptu naps
and trips out bush

and toys to chew

and little sisters to love

It is so much harder than people imagine it to be.  
And it is so much better than people imagine it to be.

Happy birthday Kaylee Grace.

Sunday, July 28, 2013

Grasping Rainbows

We did not lose Kaylee and I am thankful every day that we did not.  We lost many other things in the experiences of her first year though.  Mostly, we lost our innocence.  Of course we knew that our children could get sick.  We knew our children could die.  But to stand in a room and watch life and death battle over our child, we know it now.  For real.

It is like the world has had it's brightness and contrast altered.

Nothing looks the same.

The world is an altogether sweeter and more frightening place than we ever could have imagined.

Like many parents who have had medically fragile children, there are a few memories, experiences and places which somehow manage to sneak up on me and sucker punch me in the stomach.

When I was sorting out clothes for Amy, I could not seem to find many size 000 girl and unisex clothes amidst my stash of baby clothes.  It occurred to me that this was because when Kaylee was wearing that size, she was vomiting blood and digestive juices several times each day and night.  Few little pink outfits survived those days.  As I dressed my baby girl Amelia Jane Hope a week or two ago in her brand new, tiny pink outfits, a heady mix of hormones, sleeplessness, grief, happiness and a thousand other thoughts and emotions whelmed up and overtook me.  Hot tears poured down my face.  Intense gratitude for the strong, healthy, pink baby in my hands.  For the privilege of doing this again.  This holding a healthy child with no tubes, wires and worries.  For the fact that we all survived those awful days and still have our beautiful Kaylee.  And intense grief.  For the fact that I can never reclaim those days for Kaylee and have her pink and healthy and in my arms as a newborn rather than anchored to medical equipment.  For the broken chain and the little pink outfits that Erin and Anna and Kaylee wore that never made it through that storm.  And what that means really.  The other things that didn't make it through.  The damage we suffered as a family.  The innocence we lost.

And the good did not make the bad better - it is still as bitter as bile.

And the bad did not taint the good - it is still as sweet as honey.

And somehow in that moment I held both in my mouth and tasted them.

And I wept tears of grief and gladness at the same time.

Friday, July 5, 2013

On getting what I want

On Tuesday morning, Amelia Jane Hope - Amy to her nearest and dearest - made her debut.

She is adorable and adored

Her Birth day was unusual for us in that it took place at the hospital. The first baby in almost nine years that I had at the hospital.  It was quite a contrast to our last birth, which was attended by two midwives who I have known for years who prayed and sang worship songs with me as Kaylee was born.  My beautiful midwife who has caught 5/6 of my other babies was at home still recovering from a back injury that kept her bedridden for over a month.  We had decided to have Amy at the hospital because the doctors had recommended it after she had turned breech for a time.  I would have been happy to have her outside the hospital personally as I trust myself and my midwives to assess position etc. but we chose to comply for a number of different reasons.

I look back on the prayer I prayed for Amy's birth months ago in my journal and I have to laugh as almost none of the specifics on my "wishlist" happened.  I had gone ahead of Jon in an ambulance as things were moving pretty quick and we live 45 minutes away.  What ensued was almost comical in nature.  Instead of one of the dozen or so midwives who work at the hospital who I get on really well with, I was assigned a midwife who was a complete mismatch personality wise.  It was far from the peaceful birth, in front of my fire at home with my beloved midwives while my children slept peacefully in the next room that I had prayed for.  Amy's birth was a crowded affair attended largely by people I had never met before - a few of whom I don't care to really meet again - in a bright hospital bathroom with an unnecessary cannula hanging out of my hand.  The most challenging moments of my labour physically were accompanied by people trying to make me do paperwork and repeatedly questioning my choices and decisions and insisting that I lie down on narrow beds for monitoring and prodding.  In their defence, perhaps I didn't look uncomfortable enough for them to believe my assertion that I was in the middle of transition - I do have insanely easy labours but it was still a challenge.

So what happened?  Didn't God hear me?  Am I angry at him because I didn't get what I wanted?


He heard me.

He answered me.

He heard the bit where I prayed "if there is a plan that glorifies You more Lord, I want to glorify You."

And He took me at my word.

The bits that really mattered He totally came through on.  Ridiculously healthy baby, fantastically good birth, easy recovery, and I was home for dinner.  Home for dinner matters when the last time you had a baby, it took you two months to get home.

Lots and lots of good stuff happened too. Jon got there in time, we called in one of our independent midwives who showed up just in time to catch Amy, we got a really good room, one of my favourite hospital midwives came on shift and I was able to visit with her.  While frustrated and incredulous at some things, I felt loved, treasured and blessed beyond belief.  And we have Amy.

I don't know how this all glorified Him more than my personal wishlist.  But the thing is, I honestly don't care.  I just know that God does and that's good enough for me.  The particulars may not have been of my choosing, but I am utterly, undeniably, blessed.

Sunday, June 23, 2013

Ten tips for Self Care

Mothering Monday

Self Care - what it is and why I hate it, and why I need to do it anyway

A while back, I mentioned self care and the fact that I hate it.

What is it?  Well, wikipedia defines it as:  personal health maintenance. It is any activity of an individual, family or community, with the intention of improving or restoring health, or treating or preventing disease.

Sounds OK, right?  What could be bad about that?

Well, for me, self care means being proactive about taking care of myself.  It means planning ahead, asking for help, eating right, going to bed at a decent hour, making a workable exercise plan and sticking to it....yeah, not my favourite things.  Also, kind of hard.

But the more people I have depending on me, the more important it is.  The more demanding, time consuming and esoteric their care, the more important it is as a carer to practise self care.  When we are talking longer term needs, self care is pretty much non-negotiable.  I have a hubby who really loves having me around, I have kids whose care is an all day (and sometimes all night) affair, especially seeing as we homeschool.  In the next week or so I will have a newborn who will be rather attached to my chest.  And then there is Miss Kaylee whose daily care is so esoteric only one other person on the planet can do it, whose medical and therapy needs are so vast and complex only I really know everything and whose needs will be life long.  I need to take care of myself because me breaking, is simply not an option. I think this is why I am writing this series, I'm writing it to myself.

Over the next while I am going to expand on different areas of self care (physical, mental, emotional, social and spiritual) with some practical tips of how to manage it (finding and accepting help, support networks, the internet and self care, creative outlets).  For now, I want to spring board into this with ten general ideas of how to make self care do-able, sustainable and a little less of a chore.

(1) Forget about martyrdom. If your kids were cold, would you take the wood and build a cross and nail yourself to it?  No, you'd build a fire!  Hurting yourself through neglect does not help your children, it hurts them and makes you less effective.  We have friends and family who will not sleep or eat for days at a time when they hear something distressing is going on in our lives.  They think they are showing us love and I do appreciate the fact they care about us so much.  But the truth is, we just don't tell them about the bad stuff any more because them hurting does not help us - it just hurts us more.  It also deprives us of support because they are physically run down and cannot be practical help when we need it.   I have seen so many mothers needlessly run themselves into the ground and end up exhausted, with damaged health, frustrated and angry that they are so under appreciated.  If they took the time to take care of themselves, they would be able to serve their family more effectively and joyfully.  Perhaps the most vivid lesson in this came to me when Kaylee was about 4 or 5 days old.  I had not slept since before she was born, my legs were so swollen I could hardly walk and I was on the brink of physical, mental and emotional breakdown.  I walked into her room to find them preparing to give her a spinal tap - a painful and distressing procedure.  I almost physically collapsed.  I had to leave the room while it was done.  I have to forgive myself every day for not being there with her.  If you do not take care of yourself, one day your kids may need you and you will not be there.

Image Credit

(2) Make a realistic plan. When it was just me, I could just cruise without a plan.  I chose to go for a run most mornings, but could go any time of day if I missed it.  The only limitations to my meal times and content was opening times of the cafeteria and my budget.  If I pulled an all nighter, I could crash after class....or occasionally in class.  If I got sick, I could lay in bed feeling sorry for myself until I felt better.  Nowdays, things need to be a little better planned.  If I am going to drink enough water, I need to plan ahead and have a bottle of water and glass in a spot that I walk past often.  If I am going to have good food and enough of it, I need to make sure it is in the fridge and easy to prepare.  If I am going to get to bed at a decent hour, I need to start on that particular plan at breakfast time!  I also need to keep it realistic.  I would love to be training to run a 10k - but at 40 weeks and 5 days pregnant with our current schedule it just isn't realistic and any plans along those lines would be doomed to failure right now.

(3) Start small and attach it to routine.  This is the key to keeping it realistic.  Sometimes I get all churned up about self care and create a beautifully elaborate self-care plan, which promptly falls over after about a week.  The concept of routine is not original, Flylady relies on it and it's effectiveness is why her ideas are so popular.  Think of one small thing that will help you take care of yourself: drinking more, getting more exercise, eating better.  Plan how to take care of that need: create a spot to keep a bottle or jug with a glass (somewhere high traffic, like on your kitchen bench next to the fridge or on your desk), bookmark a couple of ten minute work outs on youtube, get the ingredients for some healthy smoothies.  Then plan a time: grab a drink every time you walk into the kitchen, pick a work out time directly after or before something that you already do (med time, nap time, meal time etc.), make a smoothie every breakfast or lunch time or as afternoon tea before you start dinner (added benefit of making you less hungry at meal times!).  Once you and your family get used to the habit, it is much easier to maintain.

(4) Little bits often.  I used to get frustrated with trying to exercise because I couldn't find the time for the hour long run or pilates work out I wanted to do.  Time to myself was a joke, I could never get an hour, afternoon or a day, let alone a weekend to myself.  But I can carve out five minutes here and there.  I can take fifteen minutes to have a shower on my own after the kids are in bed or read for ten minutes before I turn out my light.  I can take ten minutes with my dumbells or to do some stretches each morning before I get the kids up, after I put the little ones down for a nap and just before I start dinner (30 minutes exercise!).  When I started to appreciate and savour these moments rather than griping that I don't get more, I really started to feel the full benefit of them.  It was easier to be consistent and I was less prone to feel conflicted about taking time for myself.

(5) Learn to say no to say yes.
 When you say to yourself "Yes, I am going to take care of myself", you will find yourself having to say no.  No to extra responsibilities with the kid's scout troupe, no to a ministry opportunity at church, no to packing up the kids for a visit to family several hours drive away - even no to adding another therapy, class, activity to your kid's schedule.  It may even mean saying no just to yourself.  No to staying up on Facebook until you can't keep your eyes open, no to self medicating your sadness with binge eating, no to the toxic cycle of guilt.  Saying no is not fun or easy.  I HATE living within my limits and being human.  I need to focus on the yes.  Yes, I will be healthy and strong to take care of my family.  Yes, I will be calm and mentally present.  Yes, I will create a schedule that has balance and tranquillity. 

(6) Remember who you are accountable to.  Every one will have an opinion on how you run your life.  The less conventional your life, the more freedom people feel to comment on how you should run it.  Anyone who has a child with a disability can testify to having outrageously inappropriate unsolicited advice slung their way.  Larger family?  People stop you on the street to tell you how to run things.  Homeschool?  Yeah, fah-get-about-it.  Every problem you or your child faces will be attributed to that choice by well meaning family, friends, strangers and even random medical professionals.  I am not suggesting you spurn all advice or insight, but you do need to have a compass point.  I am accountable to God, my hubby and my kids.  We are running a marathon not a sprint and my family recognise this.  If they come across me having a cuppa when there are dishes in the sink, they will not disparage me as lazy and self-indulgent - they know how hard I work.  We as a family do not hold being on top of the laundry as the penultimate achievement in mothering.   If I was to try and live up to the standards of everyone who feels the need to speak judgement into our lives, I would quickly burn out.

(7) Make it attractive.  I know, I bang on and on about how much I hate self-care.  But it can be made more attractive.  I have exercises that I actually enjoy doing and if I plan to do them, there is actually a snowball's chance of me getting it done.  A pretty journal to write and a nice pen in is so enticing.  One of these days I am going to get myself a nice jug and glass for my water.  Smoothies are delicious plus my kids love them so I have the added joy (and accountability) of making them happy.  If it is quick, easy, accessible and enjoyable, it is much more likely to happen.

(8) Get back on the wagon.  However well planned, your self-care at some point WILL fall apart.  Life happens, unforseens crop up, things stop working.  The mistake often made is to give up entirely.  Perhaps your plans need a little tweaking, perhaps you just need to start again - but you need to get back on the wagon.
Image Credit

(9) Accept help and delegate.  This is hard and distinguishing real help from the kind of help that actually generates more work can be difficult.  This really needs a whole post of its own.  But allowing my kids to take responsibility around the home, trusting my husband to feed Kaylee and allowing a trusted friend to watch my kids are three important, and surprisingly difficult, things for me to do.  The control freak in me struggles awfully with it.  But when I do it, everyone is happier.

(10) Just Do It.  Seriously, there comes a point where you have to stop thinking about it, planning it and complaining about it - pull up your big girl panties - and just do it.  Done is better than perfect when it comes to self care.

Are you listening, me?

Thursday, June 20, 2013

Eyes up, and punch today in the face

You have to love a Deity with a sense of humour.

The night after I published my last post, the one about not worrying, I had a small bleed.

I was 38.5 weeks pregnant so I toddled in to the hospital although I wasn't panicking as bub was mobile and the bleeding had stopped.  I felt the most likely scenarios were a short hospital stay and a possible c-section or home and a normal birth and after what we've been through the last two years, this felt manageable.  As we drove in Jon and I strategised how to deal with a possible hospital stay and what we'd do if I needed a c-section etc.  We grabbed some dinner on the way in and as I waited for Jon to bring out the food, I felt some MASSIVE movements from bub.  Bub turned transverse - that is lying accross my abdomen.  Not a good position to be in.  I was admitted and by the next morning bub was a footling breech, head up and feet at the exit, with the cord lying under his or her feet.  If my waters broke while the baby was in this position, we'd have minutes to get bub out as the cord would be pinched.  So I spent the next few days hanging around the hospital with a cannula in my hand waiting to see if bub would turn back.  Thankfully, bub did and he or she became tightly wedged in my pelvis ready for exit.  It took me a few days to convince the doctors to let me out and I ended up being in hospital for a week and a half.

It was an exercise in trust and not worrying.  I was blessed with time to rest and the ministry of our little church gathering around to support us in practical and prayerful ways.  I have rarely felt so loved, blessed and treasured amidst frustrations.

I got home Wednesday and Billy, aged 7, started with violent gastro symptoms.  About 2am, Jon joined in.  Andrew (3) started last night.  Did I mention I was "due" Wednesday?  And then there is the odd private family stress and all the last minute jobs not getting done....

Crazy, crazy times.

But you know what?  I trust Him.
Image Credit

It's not a matter of believing that the worst won't happen.  It's a matter of believing that the worst cannot separate me from God.  And I know that it is so because He proves Himself Faithful every day.

I love this baby and anticipating having a healthy, strong newborn has healed parts of my heart that I thought were broken for good.  I did not plan to have this baby, in fact by all my calculations and measures this baby should be impossible.  Every day of this pregnancy has been saturated with the need to trust God that He will give me the strength to deal with whatever is coming.  5 traumatised kids, 1 medically fragile kid with life long special needs and a newborn.  That's a lot.  Strangers on the street stop me to tell me so.  Some people (a vocal minority) who know us go to great length to tell us how foolish, cruel, lazy and stupid we are.  I find myself being quick to tell people that this baby was not planned to try and defuse the criticism that so often comes my way and I hate that because I do not want this baby to feel for ONE MOMENT that he or she is not desperately loved and wanted.

When the words of others start to make me feel heartsick, when people feel the right to speak judgement into our lives, when people are used by Satan as a tool to speak hate, discouragement and pain into our lives - I need to fix my eyes on Him.  When we are under attack, as we so obviously are at the moment, I need to look for the ways that He is embracing and comforting me.  When everything seems to be going wrong, I need to change my perspective from temporal to eternal and realise that God is indeed in control.  I am a work in progress, my whole family is, and I need to borrow Jesus eyes to take a good hard look at myself.

Image Credit
In these moments when the problems seem so very vast and my failings seem so very many, I remind myself:

Up since 3am for the second night in a row cleaning up vomit?  His love never fails, I am loved beyond all reason - I am home to care for those I love.  Trapped in hospital yet again?  God can turn this - even this - to His glory and my benefit.  Nap often, pray much, spend time in the Word.  Perfect stranger at a child's birthday party tells me I am responsible for Kaylee's problems because I had too many children, too close together and did not eat the right things?  Evidence of God's grace in my character growth on display right there when I did not punch them in the face or verbally flay their soul.  Praise Him.  He can work with even me.

So, dear reader, if you are in the midst of trial, I have two pieces of advice.

First:  Eyes up.  Stay fixed on Jesus, the Author and Finisher of our faith (Hebrews 12).  We don't need to do this in our own strength.  If you are failing, perhaps the best thing you can do is just let it all go and rest in Him.  Let Him take over.

Second:  Punch today in the face.  Today is what you need to deal with.  Not tomorrow, or next week.  God is who you are accountable to, not your neighbour, the old lady at church with the vocal opinions or the stranger on the street.  Be faithful with today, and if you fail - remember, He doesn't fail and He loves you and start again. His mercies are new every morning (Lamentations 3:23)

Saturday, June 8, 2013

Trusting for Tomorrow

Faith Friday

Alternatively titled: Experiences of faith based living from a control-freak, INTJ, large family mother who has a medically fragile child with special needs.  And yes, Sunday is the new Friday.

Years ago, one of my ways to deal with life was to imagine the worst case scenario of whatever situation I was in and formulate a plan of how I would manage in that scenario.  It made me feel in control, to think that I had escape plans and plan Bs.

Then life started getting good.

The bad thing about life getting good is you have so much more to loose.

When you are a uni student whose most precious possessions are her books, house plants and black nail polish - life is pretty simple.  I travelled light - not so much in the practical sense (Hi, my name is Jess, I am a bibliophile and cannot live with less than several times my own body weight in books) but in the relational sense.

I had my work and studies which I loved, but shifting focus was always a possibility.
I had friends, but they were held at a bit of a distance.
Even my family had their own lives, interstate.

Then Jon came along and ruined everything.

I had more invested in my relationship with him than I had ever chosen to invest in any relationship.

Suddenly, the worst case scenario was a whole lot worse.

Then we started having kids, and I had what I had dreamed of all my life, and I had more to lose than I ever thought possible.

It was wonderful and it was awful.

Contemplating worst case scenarios would literally bring me to tears.

When Kaylee was born, I had let go of a lot but I had to reach a whole new level of letting go of control.

Kaylee was born on Thursday morning.  By Thursday afternoon/evening she was in intensive care in Launceston.  By Friday morning our doctors were trying to work out if she needed to be flown to Melbourne or sent to Hobart to a more fully equipped intensive care unit.  Friday night she was flown out to Melbourne on an air ambulance.  I could not go with her and the next commercial flight did not leave until the next morning.  I realised overnight that I did not have any photo ID.  I never got around to getting my driver's license (I don't like driving and love any excuse to stay at home!) and I hadn't flown in years.  By the time I was walking up to the airport check-in desk I was physically shaking with fear, terrified they would not let me on the plane without photo ID.  Terrified she would die before I could get to her.

Again and again I quoted to myself "You will keep in perfect peace those whose minds are steadfast, because they trust in you." (Isaiah 26:3).

It didn't actually help much.

I was still terrified.

I approached the desk and tremulously garbled "I-need-to-get-on-this-plane-My-baby-is-in-Melblourne-and-she's-less-than-72-hours-old-and-in-ICU-very-sick-and-I-have-no-photo-ID-can-you-please-let-me-on-the-plane-please-is-there-something-we-can-do-about-that-here-I-have-a-credit-card-and-medicare-card-I-have-cards."

The lady at the desk looked confused.

"Excuse me?"

I took a deep breath and painted an attempt at a smile on my face (which I think made her look frightened)

"I have no photo ID.  Can I still get on the plane?"

The face of the lady at the desk flooded with sympathy and tears sprung to at least one of our sets of eyes.

"Of course you can get on the plane!  We only reserve the right to check ID and we certainly would not keep you from your baby."

I sagged against the desk with relief as she printed my boarding pass and waved to Jon to signal it was OK.  He looked similarly relieved.

I was relieved and also frustrated with myself.  I had wasted so much energy worrying over this situation and I did not have energy to burn.  I had not slept since before Kaylee was born (and would not sleep for another two days) and was wrung out.  I knew I needed to take care of my milk supply and keep it together.

I made a resolution that morning as I watched the sun rise over Bass Strait - flying away from my husband and five older children for an unknown span of time - probably weeks and months - toward a fragile baby who was fighting for her life.

I resolved never again to waste so much energy worrying about things that haddn't happened yet.

Original image source

I read this verse every day I was away from my family (8 weeks) and it has been one of my main verses ever since.  I have so much to loose right now.  Kaylee is the healthiest she has ever been.  I am blessed with a wonderful husband.  The big kids are settling into some kind of normal life again and even my two year old is starting to de-feral with the increased stability.

And day by day it could change at any moment.

The list of things that could go wrong with Kaylee is long and scary.

There are things we are watching with her health that could take a downward turn without warning and become very scary very quickly or be fine for years, decades or the rest of her life.

 Perhaps the experience common amongst those with CdLS which scares me the most is SIB - Self Injuring Behaviour.  Before Kaylee's stomach surgery she was in almost constant pain from reflux.  She would express this pain by pulling her own hair.  She had patches on her head that were bald and bleeding.  This is when she was less than 8 months old.  I have seen older children and adults with CdLS whose faces are torn, bruised and bloody at their own hands.

There are simply no words to describe how this makes me feel as a parent.

Perhaps I can fool myself that I can protect her from the outside world.  But I know in my heart that perhaps one of the hardest and soul destroying challenges we may face is protecting Kaylee from herself.

And there are my other children and the various concerns I have about them, and my husband, and myself, finances, house renovations....the list goes on.

I have an obsessive mind.  Once it latches onto something, it is difficult to think about anything else.  No matter what I am doing there is a part of my brain teasing it out, worrying it, chewing it over.  This can be a good thing, helping me learn and prepare for potential future issues.  However it can also cross that line between learning and obsessively worrying.  The verse that sustained me "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."(Matthew 6:34) and the experience of that early morning flight are the keystones to my ability not to go quickly insane with worrying.

When my mind latches onto a concern, here is my check-list to differentiate between "constructively exploring a concern" and "worrying" - when I am in the midst it can be surprisingly difficult to tell the difference between the two.
  • Am I dealing with any new information or organising the information that I have in a new way?  If I am just obsessively going over and over the same old information it is a pointless waste of my limited energy.  I have a choice: find new information or new ways of organising the information or move on.
  • Will my thoughts lead to new action, plans or insight?  Sometimes rearranging the information I have or organising it better can give a real boost to what I am doing and help me make choices that improve our lives or prepare us better for the future - sometimes it is just rearranging the deck chairs on the Titanic.  If there is no practical benefit, short or long term, to what I am thinking about, I need to move on.
  • Is my attitude toward this issue one of hopelessness and despair or rooted in a knowledge of God's promises, loving kindness and blessingRomans 8 and Philippians 4 are two other chapters that help me keep an eternal perspective rather than a temporal one.  This really needs a post of its own.  Even if I am dealing with new information which could lead to new action, plans and insight, if I am still spiralling downward I need to step back, at least for a time.  I am of no use if I am in the pit of despair. 
So how do I change gear?  It is one thing to say "stop worrying", but HOW?  As I said, I have an obsessive mind.  Once stuck on something it can be very difficult to move on.
  • Find today's worry.  What is going on right now that I can actually do something about?  I need to get into whatever that is rather than obsessing about things I cannot control.  
  • Do something.  Anything.  I am not good at down time and tend to be a work-a-holic.  I have learned the hard way though, that sometimes I need to disengage from "work" mode (care manager, school teacher, whatever I am stuck on) so I can come back with a fresh perspective.  When Kaylee was in hospital I would sometimes go and scrub the parent's kitchen or wipe down her room. I am not a clean freak, but the concentrated effort of cleaning helped distract me from whatever broken record my brain was stuck on and come back with new eyes.  Knitting and watching Dr Who, pinning on pintrest, nature journalling, scripture journalling, writing, reading, praying...  Whatever will engage my brain and get me out of the rut of worrying for a time.
  • Focus on the good for a while.  Sometimes when everything seems to be going wrong, it is a worthwhile exercise to spend some time thinking about what is going RIGHT. For me this includes: list writing/writing in a gratitude journal, doing something I enjoy with the kids, spending some time with my husband without discussing "issues"(lovemaking is excellent for this purpose!  It is a beautiful way to give thanks for each other), and sessions of thanksgiving prayers "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." (Philippians 4:6,7)
  • Worship songs.  Like Saul being soothed by the harp of young David, sometimes music makes things better.  I can't carry a tune in a basket, but I do find that music can distil things down to what matters, bypassing my logic and cutting though to the heart of the matter.  Sometimes I listen to music (Praise You In This Storm, Casting Crowns; Farther Along, Josh Garrels; Tunnel, Third Day; Mountain Top, City Harmonic; ) other times I belt out a few hymns (It is Well With My SoulWhat a Friend we have in Jesus; My Hope is Built on Nothing Less; Turn Your Eyes Upon Jesus)
  • Get it all down in writing.  Sometimes the act of writing it all down gets things into a more manageable form.  It gives clear specifics to pray over and a direction to move in.  It pushes me from fruitless wheel spinning to moving forward in faith and learning.
  • Give myself a time limit to talk about, research and deal with the issue I am worried about.  Sometimes, in spite of all my best efforts, I am stuck on a topic and can't budge.  So I give myself a day or a week or some period of time to deal with it, journal about it, pray about it, talk it out etc. I do this with the promise to myself that at the end of the given period, I will be DONE with it, at least for a while.

What stopping worrying and stepping out in faith is NOT (at least for me).
  • It is not ignoring the things in my life that concern me.  Sometimes when I talk about some things that may become an issue in the future, people tell me not to think/talk about it.  For me though, monsters in the dark are the scariest type of monsters.  There are times that I may have to walk away from a specific issue or concern for a time, but I always know I will come back to it.  I may take the time to gather my thoughts, adjust my perspective, choosing not to dwell or have a little break, but I am not running away from the issue.  Faith isn't pretending the water can't drown you, it is trusting God that He won't let it.
  •  It is not believing that bad stuff will never happen.  It just does.  Stuff hurts and no matter how good the good stuff if, I can't deny that.  But a wise Time Lord once said: 
Can't find an image source, please comment with a link if you know!

And while many things in life are outside my understanding, nothing is outside God's control.  I trust God that His plans for me and they are plans to make me prosper and do good things in my life (Jeremiah 29:11) but sometimes, some of those plans will hurt in the short term.
Image Credit
The trick is not to let bracing yourself for pain which may or may not be in the future consume the present.
  • It is not lying to myself or God about what is going on in my heart.  I see a lot of Christians who cover their pain with bright clich├ęs and carefully avoid saying anything that might "make God look bad" or make them seem like a bad Christian.  I want to take their hands, look deeply in their eyes and tell them sincerely, in a way that they can hear, God is big.  He is bigger than your pain and He can take whatever you have to say to Him.  Read Psalms.  So many of them consist of "God I hate what is happening right now, this is exactly how it makes me feel and I need You".  The thing is, the act of being honest with God instead of trying to pretend you are thinking and feeling what you think a Christian SHOULD think and feel - opens the door to a greater closeness with God than you could ever imagine.  It is OK to say "I am hurting, it sucks, I'm scared - please help me  to trust you and have faith in you.".  Sometimes I try and force myself to be OK with things that I am really not OK with and by doing so, I take it out of God's hands and try and fix it myself.  This is not faith.  Faith is dumping it into God's hands daily (hourly, minutely?) and saying "this is a mess.  I know I should be OK with this, this and this but I am not.  I don't even want you to change me to be OK with it because that is how much I am NOT OK with this!  But I want to want You to change me.  That is our starting point Lord."  He is big.  He can take it from there.
What stopping worrying and stepping out in faith IS (at least for me).
  • Believing that nothing can come between God and I without my permission.  He said it.  "No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord" (Romans 8:37-39

Tuesday, June 4, 2013

Adventures of a Tubie Mama part 1- How it all began NG-NJ

Tubie Tuesday

The moment I laid eyes on Kaylee, one of the first thoughts that went through my mind was "How on earth am I going to feed this little baby?"

And I've been thinking the same thing pretty much ever since!

I had breast fed all my other kids and experience had taught me that my smaller babies were often a bit slower to catch on to feeding.  The older kids had a birth weight of between 8 pound 9oz and 10 pound 1oz so when Kaylee was born at a tiddlly 5 pound 4oz and obvious signs of some kind of syndrome, I figured we were probably in for a few challenges.

The first few hours after her birth I had the privilege of being in a calm, familiar environment at our independent birth centre, attended by the midwife who had caught 5/6 of my babies and a secondary midwife who had been present at the births of at least two of my other babies.  Both of them are committed Christians and had sung worship songs with me during my labour.  It was a time of peace, tranquillity, prayer and trust.  I snuggled my tiny, beautiful girl into the bed beside me with my husband curled around behind me and carefully expressed colostrum into her mouth.  She lapped it up and looked happy, but did not try and feed.

Fast forward to the hospital.  We took her in to get checked out - me suspecting that she had  "some kind of syndrome" and naively thinking they'd tell me what she had and I would take her home, keep her warm, work out how to feed her and google it.  Then life hit fast forward.  She had her first de-sat ('blue' incident), we had a room full of medical personel, we had our first-of-many gentle conversations with a kind, no-nonsense paediatrician who was to become one of the most loved of our "medical minions".  We had the first introduction to the humidicrib which I hated then upgraded to the ICU baby warmer which I hated more.  And the tubes and wires started.  Within 36 hours she had been airlifted to Melbourne and looked like this:

Kaylee at 36 hours old, still intubated after her first private plane trip

Now I look at that pic and think "you know, there aren't THAT many tubes and wires really." but I suspect that is a result of spending too much time hanging out in ICU and on cardio ward.

This whole time I was working hard to express whatever milk I could for her.  Eventually, my milk came in and we managed to whittle the tubes and wires down to this:

That beautiful newborn still makes me melt!
And then this:

Kaylee is sporting the minimalist NG tube look
An NG tube is a tube which runs through the nose into the stomach.  I don't remember specifically the conversation around it being placed, although I am sure there was one, and I don't remember being especially shocked or disturbed by the concept of a feeding tube.  At the time I was so totally overwhelmed I don't think I had enough energy to be shocked or disturbed.

At the time her first feeding tube was placed Kaylee was having trouble remembering to breathe and her heart was malfunctioning so much of her blood wasn't getting oxygen.  Plus, as a part of her Cornelia de Lange syndrome she had low muscle tone which made it difficult for her to feed.  She also had a small cleft in her soft palate and generally tired quickly and had reflux.  If Kaylee had not had her tube placed she would have become severely dehydrated and the result would not have been good - most likely fatal.  So I thank that little tube for saving my daughter's life and for all the frustrations and heartbreak that go along with raising a tubie, this fact remains - a feeding tube is a piece of medical equipment without which my daughter would not be here.  The decision to place the tube was a no-brainer.

Kaylee made some attempts to feed orally over the next few weeks, but she tired easily and her condition was still unstable.  After six weeks, three hospitals, three air transfers, one 3 hour road transfer, and several de-saturations all culminating in her turning navy blue and being resuscitated by the Medical Emergency Team, Kaylee was rushed off for emergency open heart surgery where a cardiac shunt was placed.  Within a few days of her being out of ICU, we started trying to get her feeding regime to 3 hourly bolus feeds (that is a larger amount given all at once) rather than the continuous drip feeding she was getting.  Her heart started to have periods of rapid heart beat and it was determined that this was due to reflux so the decision was made to change her tube to an NJ tube.  This is a tube that, rather than going directly to the stomach, went through the stomach and into the intestine - specifically the part of the intestine called the jejunum.

Thus began our adventures with the NJ, the tube I hated the mostest.  (Stay tuned for part 2, coming up, probably on a Tuesday sometime in the future)

Monday, June 3, 2013

When the Unlovely Loves the Unlikable - and other tales of parenting

Motherin' Monday

I love my kids, I really, really do.

But they are not always likeable.

There are all kinds of firsts that you don't have space for in the baby books.  The first time your child smears poo.  The first time your child lies to you.  The first time your child has a melt down in public.  The first time they manage to push your buttons to the point where you COMPLETELY LOOSE IT.

And the first time you realise they are reflecting your character flaws right back at ya.


It was easy to fool myself that I was a nice person before I had a husband and kids.  If I was frustrated, I could withdraw from the situation.  People were generally fairly polite to me and if they weren't I could leave, feeling justified in my wrath, and go and find some other friends.  If I was feeling snarky or in need of "me time" I could just go home, close the door, turn up my Janis Joplin album and read angst-y books to my hearts content. 'That time of the month' was usually accompanied by solo trips to the movies, buckets of jersey caramels and a door locked from the inside.  It was awesome.

But the thing is, you can't take the batteries out of your kids when they annoy you.  You have to take care of them even when they are being pillocks, brats and generally unpleasant children.  And those days have the happy coincidence of arriving (at least at my house) when I am at my least likeable too.

I can't decide if it is irony, God having a slightly twisted sense of humour or character growth.

As a mother, I have gleaned a few tips which work for me when it comes to loving the unlike-able child and dealing with my own less-than-lovely traits.  I am sharing here so I can come back and read them on *those* days and in the hopes that y'all can chime in.  Because let's face it, we need all the help we can get.

This is not a series on discipline techniques - I am not brave enough to do that.  Perhaps self discipline will come into it sometimes!  But for the most part, it's survival tips, thoughts and relationship building techniques from a non-expert who may have had opportunity to make a few mistakes and might have found out some stuff that may work for you too.

Tip 1

Take responsibility for yourself

* Don't be reactionary. If your children's every day behaviour can cast you into the pit of despair or catapult you to the heights of joy, you are in for a roller coaster of a ride.  If you join in your toddler's tantrums more often than not, nobody is having fun.  If you take everything your child decides to do personally, you are in for a slow decent to insanity.  Take a deep breath, step back and deal with whatever is going on like a grown up, do not engage.  If you stay grounded, you can be their anchor.

* Know your own limitations and plan accordingly.  I hate being human.  When I try and be super-human though, it just ain't pretty.  I hit a limit - needing to eat, sleep, bathe, have two minutes brain space to think, get a spiritual re-fill from prayer or the Word - and I haven't planned for it (because I am being super human that week).  I either have to push through or step back and let all the balls I had in the air fall down, letting down my kids, my husband and myself.  Which makes me crabby.  Often, crabby with my husband and kids.  And woe betide if any of THEM are less than perfect when I am in THAT particular mood!  But who is responsible for whom in this situation?  Is it my kid's job to make sure I eat well, get enough sleep, exercise, make time for spiritual input etc?  Who is the Mum here?  

I hate self-care, with the fire of a thousand suns I hate it.  I get everyone fed, bathed and put to bed then find out I forgot someone - me.  I don't want to do those things, but I need to.  Someday soon I will expand on this more (or not, because, you know, I hate self care) but the upshot of it is, you cannot effectively manage your kids if you are not taking care of yourself.  You are a grown-up, taking care of you is your job, nobody else's.

* Spank or hug your inner-moppet when necessary.  Few of us, in this fallen world, have made it to adulthood without emotional *stuff*.  Whatever your issues, you need to own them and deal with them.  Unfair?  Yup.  You know what would be even less fair?  Passing on that legacy to your kids.  Seriously, you owe it to them to mess them up in a totally creative new way.  Take some time to think and pray about the things that trigger guilt, rage, frustration, hopelessness, anxiety etc. in you.  Journal, seek counselling, take an anger management course, pray - do whatever you have to in order to deal with it.  Rinse and repeat pretty much forever.  Because your pain and trauma does not justify you hurting your kids.  Yes, it needs to be said.  When they grow up, they WILL remember the ways you hurt them.  There is nothing you can say to them that will make it OK that you hurt them, you were supposed to protect and care for them.  Through humbly asking forgiveness and working hard to get rid of your junk so you can love them well, you can build a relationship with them which will foster love, mercy and forgiveness on both sides.  But you need to do your homework and take care of your junk.  You are the grown up.

Bad news: parenting can bring up all sorts of stuff you never even realised was there, dealing with it is your responsibility and it is not fun and it is not easy.

Good news:  This will give you opportunity to lay down burdens you didn't even know you were carrying and become the beautiful creation you were intended to be (2 Corinthians 5:17)

Yeah, I sometimes wonder if it's worth it too.  But I know it is.

* Forgive yourself. Every day.  Guilt is toxic, let it go before it poisons you.  You cannot do better if you are still beating yourself up over your failures.  Loving your kids when they are unlike-able is hard, but when you are consumed with self loathing it is damn near impossible.  

 Does all of this seem too hard?  If so, just curl yourself in a ball and hide yourself in God's mercy.  It's the best place to start and if you hide yourself in Him deep enough, all these things will probably happen anyway.  Because my experience has taught me that the best way to become a good mother, is to get to know your heavenly Father better.

What about you?  How do you manage those days when you and/or your children are being unlike-able?

Friday, May 31, 2013

Guilt vs. Conviction

Faith Friday

I am the Queen of Guilt.


I could have a tiara and everything.

I have the ability to feel guilty about things that haven't happened yet.

Things that might have happened but didn't.

Things that happened over a decade ago.

If guilt was an art, I would be the Da Vinci.

But here is the thing, guilt achieves nothing.

A mother screams at her children, struggling with anger day after day.  She feels guilt and self medicates with food, facebook and 'me time'.  Then the next day it all starts again.

Because the thing is, the source of guilt is Satan.

There is a reason he is known as the "accuser of the brethren".

Guilt focuses us inward, on our unworthiness, without hope for redemption.

Guilt overwhelms us with our own filth.

Guilt renders us powerless, a victim of our own choices.

Guilt focuses our vision on our own unworthiness, which makes us angry, frustrated, sad and hopeless but we can wrap ourselves in guilt like a big, smelly blanket and wallow - because guilt is also stationary and there is a certain comfort in not going anywhere.

Because if we are hopeless and powerless we have we have no choice in the matter - no responsibility or ability to change.

This is not God's plan for us.

Guilt does not cleanse us and it is not the starting point of redemption.

Conviction is.

"Conviction is the work of the Holy Spirit where a person is able to see himself as God sees him: guilty, defiled, and totally unable to save himself" Christian Apologetics and Research Ministry Dictionary of Theology

Conviction gives us an understanding of where we stand in relation to God.

Because conviction is the work of the Holy Spirit it does not stop there.  It points us to God, the God of Hope who will fill us with all Joy and Peace (Romans 15:13).  When we are convicted truly to see ourselves as God sees us we cease to have any twisted feelings of virtue about our guilt.  We can no longer pretend that by feeling bad, we will make anything in our lives any better.  We know that there is nothing we can do that will save us. We cannot justify our sin, crying about it does not make us more worthy, being sad that we are bad does not make us good. So where does this Hope, Joy and Peace come from?

Our choice to accept Salvation and live in Grace.

Choice is the most powerful thing we as humans possess and Satan makes it a full time job to help us forget this.

He tries to trap us in that guilt cycle to keep our eyes firmly focused on how bad we are to distract us from just how good God is.

So how do we get off the Guilt cycle and get ourselves some of that Hope, Joy and Peace?

Step 1.  Determine the difference between guilt and conviction.  Who are you focusing on, yourself or Christ?  Are your feelings of unworthyness driving you to acts of destruction toward yourself and others (anger, hopelessness, frustration, binge eating, habitual sin?) or driving you deeper into God's Word and Prayer?  What are you obsessing about, your own feelings or past actions or Christ's redemption and true repentance?  What are you moving toward, true change toward a more Godly attitude and life (sanctification) or being paralysed by hopelessness?  Be real about this, with yourself and God.  The first step toward being somewhere else is being real about where you are.

Step 2.  So you're guilty, now what?  Ask.  Ask for the Holy Spirit to replace your guilt with conviction.  Ask what you need to do next.  Saturate yourself in Prayer.  The Holy Spirit will not let you down, He comes to all those who ask - He is our comforter, not our accuser (John 14:26).  Make contact, reach out to God.

Step 3.  The brethren who were accused day and night by that Old Devil overcame Him by the Blood of the Lamb and by the word of their testimony (Revelation 12:10).  When we have accepted that gift of Salvation, we are justified.  We are washed in the blood of the Lamb of God (Revelation 1:5).  So testify.  Write it in a journal, phone a friend, pray it out loud, say it, sing it, put it on a post-it note on your mirror - however you want to do it.  Just put it out there that you are saved, not because of the righteous things you've done, but by His mercy through Jesus Christ (Titus 3:5).  Every time that old accuser comes calling, remind him that he is defeated.  Sing the hymns, crank up the worship music, quote the scriptures, click on every scripture in this post and write it out on a post-it, decorate your house with the precious Word which will remind you of your salvation and focus your eyes on how good God is rather than how bad you are.    

Step 4. Live it.  Guilt traps you in a cycle.  You don't move forward with guilt.  Conviction is a starting point to move forward toward becoming the beautiful person God created you to be.  Did you know you were created for good works?  Yes, we are saved by grace through faith - if we are truly convicted of our sin we know we can't boast that we earned that precious gift of salvation (Ephesians 2:8-9).  Now we are saved, we are free to do the work set out for us (Ephesians 2:10).  We are free to get out of our own way and allow the Holy Spirit to bear His beautiful fruit in our lives (Galatians 5:22).  We are free to love other people fully and completely without being so bound up in our own angst and guilt that we destroy those around us.  We are free to apologise whole heartedly to those we have offended and do what we can to make amends - without trying to justify ourselves or minimise our sin.  We are free to let go of habitual sin and cling on to God's Word.  We are free to drop those burdens that we have been carrying for so long they seem a part of us.  We can run in the path of God's commands as He broadens our understandings and sets our hearts free (Psalm 119:32).  You have a family in Christ now who can pray for you, that you are freed  - that you will be healed (James 5:6) .  You can seek counsel and prayer to help you with your issues that Satan uses to trip you up into those old familiar sins.  You can saturate yourself in God's Word, the ultimate answer.

What work is there sitting in front of you that can glorify God?  Perhaps it isn't big in the eyes of the world.  Is it simply loving your spouse and kids?  Is it being patient and loving to those people in your life right now?  I challenge you to stop the cycle of guilt and sin and accept that gift of salvation completely.  I challenge you to start becoming that beautiful creation you were made to be (2 Corinthians 5:17).  I challenge you to focus your eyes on Jesus, throw off all that is hindering you and run that race (Hebrews 12:1-2)  Stop the guilt cycle.  Stop believing you have no power to change.  Stop believing you are not capable of better in your life - because you can do all things through Christ (Philippians 4:13).

What I am talking about is a relationship with God and relationships are rarely a step by step deal.  It's more of a dance.  You may find yourself having to do the quickstep, repeating 1, 2, 3, 1, 2, 3 a few times before you are ready for 4.  Then you may find yourself turning and starting all over again.

But what I am saying dear friends, is when guilt comes calling, start dancing.  Because we are not called to be guilty, we are called to be free.  Free to live life more abundantly (John 10:10).

Thursday, May 30, 2013

What's in a name?

I was always the weird kid.  I had have a slightly twisted sense of humour.  I will be the one telling the ever-so-slightly inappropriate joke or laughing at the "wrong" parts of the movie.  I remember when I was 16 I went to see Fifth Element with a group of friends.  Afterwards one of them scolded me with wide eyes "how could you LAUGH when they were SHOOTING PEOPLE?!".  Um, because it was a comedy?  I thought so anyway.

There's nothing WRONG with me - I don't think anyway.

Then I grew up.  I got married.  I had a baby and found I liked it so much I kept having them.

I had 6 of them.

In less than 8 years.

I don't do things by halves.

Our sixth baby changed our lives more dramatically than we could ever have imagined.  She was born with severe, life threatening, health issues and a rare syndrome called Cornelia de Lange Syndrome.

In her early days I spent 8 weeks sitting by her hospital bedside and I blogged my little heart out.  Writing was a way to make sense of the world, to communicate with my husband (who was interstate from me taking care of the other five kids for most of this time), to let the world know what we were going through.

But as any writer knows, writing honestly is hard.

At the start, when life was so folded in on itself the outside world seemed almost fictional, I didn't care what the world thought.  I didn't think about what the world thought.  My whole life was focused on keeping that little girl alive and trying to untangle the snarl of issues, worries, STUFF that had dropped into my lap.  Hemmingway once said

Well I was bleeding anyway - in the metaphorical sense (which I am assuming Ernest was referring to) - so it was just a case of putting the lap top in front of the flow.

Then as I started to find my feet again.  My toes started to catch on the rocks on the bottom of the river that had swept me off my feet and I started to raise my head above the water and look around once in a while.

I freaked out.

The handful of readers who were following my blog kept telling me over and over who I was.  "You're Amazing!" "You're a Super Mum!" "You're Fantastic!" "You're so Strong!"

The people in my life had opinions of how I should run my life.  "Accept this money from this charity - even if it makes you feel awkward and you don't know what to spend it on!", "Send your traumatised older children away and have the house re-roofed and rewired - because renovations are the priority right now!",  "Have this bag full of hand-me-down clothes even though you have nowhere to store it an no time to go through it and you don't need any more clothes!",  "Have this cake even though there are so many cakes on your kitchen bench you can't fix dinner and you don't even like cake!"

Readers and the people in my life had opinions on what and when I should write. "You have an OBLIGATION to your readers!", "We all want to know what's going on, you need to write more!", "How dare you write that watching people pin down your baby and hurt her makes you want to punch them, that is so inappropriate for a public forum!", "I can't talk to you anymore because you wrote that listening to other parents talk about normal frustrations upsets you on a bad day and I don't want to upset you."
And that's the day, ladies and gentlemen, the blog died.

It all just got too hard.

I wanted to write because that's what I do, not out of a sense of obligation.

I wanted to write honestly, but not hurt my relationships.

Between doctors, therapists and other para-professionals decisions as simple as what and how to feed my kid were now being made by committee.  The last thing I wanted was another opinion on how to run my life and putting myself out there onto the internet seemed to be taken by some as an invitation to comment.

And I didn't want to be a Super-Mum.

People don't really listen to Super-Mums.

If a Super-Mum tries to be honest about her pain or her failings, her "fans" just keep shouting at her how fantastic she is until she is quiet and goes back to living up to their expectations.

It's not me.

I am changed, but I am still me.

And I needed to take some time to figure out who that was now before having the world shout at me who they thought I should be.

I think I am starting to work out who that is again now.

And I am still twisted.

I still laugh at the wrong places in movies.

I still give a happy wriggle of joy when I hear the Dr Who theme.

I still consider Joss Wheedon to be the Shakespere of our time.

I still cling on to my Bible as a lifeline I can't do without.

I still make inappropriate jokes.

I still occasionally use words that I pray will never come out of my kid's mouths in front of their grandmother.

I still loose my mobile phone on a regular basis and can't abide touch screens.

I still consider eating cheese and/or chocolate and watching youtube videos on my own to be the penultimate way to spend an evening.

When I am angry, it is not because I am bitter, it is because I am angry.

When I am frustrated, it is not because I am not coping, it is because I am frustrated.

When I am sad, it is not because I am broken, it is because I am sad.

I am not an icon.

I am not a doe eyed Madonna with lilly white skin, a symbol of self sacrifice and maternal perfection.

I am not a Super-Mum.

I am me.

And I still write.

I am twisted - not broken.

This blog is my fresh start at writing for the public forum.  What do I want out of it?  I am still trying to work that out.  But I know that writing with no audience is like having half a conversation.  I want to throw some ideas and thoughts - practical, theoretical and esoteric - out there.  I want to polish up this compulsion I have to write and actually do something with it.  I want to play around with words.

So here we both are.  Let's see where it takes us.