Thursday, January 29, 2015

A letter to myself

Dear Me,

Here's the thing.  When a doctor or a nurse or a specialist or a therapist walks in the door, you treat them like a superstar.  You do this, not because you worship the "expert" or the "degree" but because you know that the absolute most you are likely to get from a person, is what they think you expect of them.  You reason that if you treat them like they are a superstar, you will get their best work.  If they feel admired and happy and fulfilled in their work, they will do their best work.  If they like you, they will do that little bit more for you and your kid.

And you're right, it works.

Not every time, but enough of the time.  You get results.  You get them at their best.  It's awesome.  You go girl, you work that system.  It's not manipulative, it is creating the most positive environment for the most positive outcome.  It is part of your job and you are good at your job.  You rock.  You, my dear, are a total superstar at what you do.

You know what you suck at?

Treating yourself well.

You completely and utterly suck at that.

You stay up too late, you drink too much coffee, you don't exercise, when time or money or energy gets tight the things that make you happy are the first things to go out the door every single time.  You eat crap.  Seriously, there are more than two food groups and none of them are called "coffee" and "Carbs".  It's like you're punishing your body with food, not feeding it.  And the only exercise you get these days is hauling the girls around.  You have stellar triceps and biceps but they are seriously the only part of your body with tone.  You don't drink enough water.  And you are mad at yourself most of the time.

You are mad that you haven't got half the things on your to-do list done.  You are mad that you are not kinder and nicer.  You are mad that you aren't a good enough mother, wife, friend - whatever.  You are mad that you fall so short of the expectations you have of yourself. You're mad that your armor had chinks. But armor without chinks can't move, you know that.  And you need to dance sometimes. You are angry that you trusted or hoped or believed in people who have hurt you lately - which really is not fair because, yes, those people have a history of letting you down, but honey if you never hope.....

And because you are mad you pile that on top so you can't see that you are sad.  You are sad that you can't stop the hurting.   Yours, Kaylee's, everyone's.  You are sad that so many of the people who are supposed to be in your corner are instead in the critics box.  You are sad that help and support seems to come with strings attached or judgement more often than not at  the moment  You are sad because you're realising that many of the dreams you had for yourself are impossible and the ones that aren't impossible are mostly really, really hard.

And you are tired.  You are tired of it being so hard, every day.

And because of all the sad and the tired, you get more mad.  Because you SHOULD.  You should be thankful for what you have, you should be more organised, you should take better care of yourself, you should work on your relationships more, you should be kinder and nicer and should.  Your shoulds could fill up a room and frequently, when you let your mind drift to the land of should, they do.  And it is easier to be mad than sad or tired.  It feels safer.  It feels stronger.  But it isn't.

So stop.

Tomorrow, when you get up in the morning, you are going to treat yourself like a superstar.

You are going to enjoy a cup of coffee, and make yourself some herbal tea and egg on toast for breakfast.  Yes, there's only one egg left  - everyone else will survive a few days until the grocery shopping is done, it won't kill them for you to eat it.

You are going to fill up a jug of water and take the time to drink it through the day

You are going to be at least a little bit realistic with your to-do list and cut yourself a break about the things you don't get done.

You are going to do something that makes you happy.  I don't know what right now because I'll be honest with you, I am so sad and tired I can't imagine being happy right now.  But you will find a way.  And if you can't be happy, at least be neutral.  Find things that don't make you sad or frustrated or angry and do them for a while.

You will think about what you want to do tomorrow evening and if it is just go to bed, you will excuse yourself without guilt (or at least while telling yourself not to feel guilty) and go to bed and read and journal for a while on your own.  And that will be OK.

And you will feel tired, and you will feel like you work damn hard - because you do and that's OK because that's what superstars do.  That's why they are superstars, because they work darn hard.  But you will also feel loved.  You will feel cared for and you will feel respected.  By you.  And that's important.

Because honey, you are teaching people how to treat you by the way you treat yourself.  You are teaching your daughters how to treat themselves.  You are the only one who will take care of you, get used to that.  So you need to do it.  And when you get up the next morning, you will be a superstar, a BIGGER superstar than the day before.  And you will treat yourself as such.

And perhaps one day, you will stop being angry that you are not perfect.

Perhaps one day being a superstar will be enough.

Tuesday, December 16, 2014

Flowers and Milestones

Two of my daughters are very different to each other.  Well, each of them are different - but these two exemplify extremes in personality.  The classic extrovert and the classic introvert.

If my little extrovert found a flower, everybody within earshot would know.  "Oh, FLOWER!"  Each person would be shown the flower and told about the flower and be gifted with a detailed story about the flower - possibly combined with interpretive dance.

If my little introvert found a flower, most would hardly even notice.  If I saw her sitting on the floor with cupped hands I might sit with her.  And she might gift me with a glowing smile and open her hands ever so slightly and together, silently, we would soak in the flowerness of the flower.  We would savour that moment together.  Perhaps we would talk a little about flowers - but perhaps we wouldn't.  We'd just share the flower together.

Both experiences of the flower, and my daughters, are complete and beautiful and amazing.

Neither of these experiences, in any way, had anything to do with "milestones".

It was about them.  As people.

People ask me about Kaylee's milestones often, and I get that I really do.  It's kind of like asking what grade your kid's in or how she's doing at school.  It's a common ground kind of question.

Also, people want so badly for her to "do well".  To succeed.  To be one of those inspirational people who Defy Great Odds and perhaps have their own motivational speaking circuit - or at the very least, be almost "normal".  Able to avoid some of the Very Hard Things faced by those with disability in this world.  Able to Triumph over Great Adversity - or avoid it altogether.

I know all the milestone stuff and when I am rocking the therapy circuit and liaising with the medical minions I can lay it all down using all the latest jargon.  But I can't help thinking, if all you look at on a journey is the milestones, it is really all about the destination and not at all about the journey.  What is the destination?   Well, I can tell you with absolute certainty that there is not a person on the earth that can, with complete certainty, predict if I will outlive Kaylee.  I can also tell you with absolute certainty that I have no idea which of those given alternatives terrify me more.  

In the days pre-K (before Kaylee) I was all about the destination baby.  We are talking five, ten, twenty - even fifty year plans.  Heck, I had my own eulogy written out.  Since then, I've grown to realise just how unpredictable life is, how worrying about the future does nothing to change it and how easy it is to miss the small things that are NOW when you're making it all about the end game.

Since then, I have learned that looking at flowers at the roadside is just as important as looking at milestones.

Neither of the daughters I described are actually Kaylee.  Both are linguistically advanced for their age with every other milestone hit bang on time or early - way early in a few cases - and none of that matters when we are looking at flowers.  What matters, is who THEY are.

When Kaylee sees a flower and it catches her attention, she will pull up her eyelids using her hands and a motion that is just so utterly, adorably Kaylee.  She will look with mouth open in sheer amazement and take in every detail.  Then she will close her eyes and laugh.  She will look again, closer and perhaps gingerly touch it.  And if you sit quietly and watch, you will never see that flower the same.  

If you find out what milestones Kaylee has reached, what motor skills she has mastered and what medical issue we are currently grappling with - you will learn about Kaylee.

If you find out what makes her laugh, what grabs her attention and what incites wriggles of joy - then you will get to know Kaylee.

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.

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(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.
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(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?