Sunday, 3 January 2016

A million miles from perfect - My five babyhood failings

I'm totally chilled about this.  I can just
unpick the colours right?  Right?

‘It just wasn’t meant to be this way.’ 
It’s a phrase I’ve both heard and uttered.  When my boy was born with complex medical and developmental needs, I would think it, say it and worry about it.  I would worry because I wasn’t able to do the things I was MEANT to do. The things that were supposed to make me a good mother.  I remember speaking to a heartbroken woman on the hospital ward during yet another hospital admission.  Her tiny baby was being fed by tube.  She was devastated because she couldn’t feed him herself.  As if by not doing it, she was somehow failing.
Only she wasn’t.  Not at all.  It’s just that no one really talks about our world.  In a media environment where parenting tales are dominated by stories of mothers enrolling their babies into the ‘right’ nursery before they are even born, endless books about the ‘right’ way to get your child to eat or sleep; and judgmental nut jobs  experts implying that babies born by C Section don’t bond with their parents – what hope for those of us who had no choice?  Our reality doesn’t really feature.  Mother and Baby magazine doesn’t tend to lead with a ‘top outfits to compliment an NG tube’ story.  
When new parents are under unfeasible levels of pressure to attain the unattainable – what happens when it’s not even an option?  Well, actually, sometimes its surprisingly ok.  And it gives some interesting perspective on those perfect expectations.  It took me a while, but finally I was able to see that trying was far more important than achieving. 
I’m not saying that parenting perfection is a bad thing.  Just that the extent of the pressure is occasionally overwhelming. And when the world turns upside down and reality smacks you in the face, it doesn’t really matter if the dummy you planned to never use is a long term fixture, or if they only sleep when held – all that matters is your baby.   Now I’m merrily saying all of this as a massive hypocrite. I was actually pretty easily influenced by that ‘Perfect Baby World’. The one that pops up in magazines, on websites and in baby groups.  Only I failed pretty epically.  You see <deep breath>………I’m a hypobirther who had a C-section……A salt and sugar avoider who cheered at the consumption of Wotsits (dissolving food of choice for a child who can’t chew)….. A routine follower who sacked off all the sleep training rules.  And you know what…its ok.  There were times I would beat myself up about it.  But really.  It’s ok.
Because sometimes the rules don’t apply.  And because no one talks about Complex Child Land, only Perfect Baby World, it can be hard to envision the space in between.  It can be hard for newcomers to this crazy reality to know that it’s ok.  That trying is enough.  That sometimes there is nothing you can do, and that’s ok.  No wonder that mother I met was so heartbroken. 
So here they are.  My five babyhood preconceptions and our reality:

1.       Breast feeding:
Perfect Baby World:
In Perfect Baby World, the message is really quite simple. It doesn’t matter if you are doubled in pain and your child isn’t interested, or has a latch like a small irate hoover. If you fail in this basic skill, you have set your child up on the road to life-long failure.  As you mix that powdery formula and lovingly tilt that carefully sterilised bottle into your baby’s mouth.…..your child judges you.  As they enter into a perpetual cycle of self destruction……they judge you.  As they fail in school and hit the Bacardi Breezers hard (cos they are well used to a bottle FYI)….they will know it was all your fault.  As they stand in court awaiting sentencing…..they will know.  As the judge brings down the hammer and the court takes in a collective breath, they will turn, point the finger of truth and say ‘It. Was. You.’
Complex Child Land:
Complex Child Land is well, a little different.  Don’t get me wrong, we all know the benefits of breast feeding and it is still something to strive for.  However, it may not be an option.  Many complex children find themselves on specially developed and broken down formulas.  In some cases, these are delivered via a tube.  The quality of these formulas can be determined by how sharp an intake of breath the GP takes when they get the prescription letter (If you find them sobbing in the corner, rocking back and forwards whispering ‘my budgets, my budgets’ – you’ve got the good stuff).  These range from the ‘pretty good’ option, which smells like fake tan and hops; to the ‘really good stuff’, which smells like potatoes and wee.  Whilst this may not sound appealing, when you have a child in the ‘failure to thrive’ category, constantly being sick, or screaming in gastro pain – it really doesn’t matter if your house smells like the cast of the Only Way is Essex have done a day trip to a brewery and then rolled themselves repeatedly across the walls.
Our reality:
Amazingly, I was able to feed J for around seven months.  But it was incredibly difficult and motivated by a fear of formula escalating his problems.  He would arch and scream.  Establishing feeding was a hellish cycle of sleep deprivation and failed attempts. Then finally, we began trials of specialist formulas, ending up on the most broken down version.  For three years, we continued to coax two bottles worth into him by making well rehearsed yummy noises ‘mmm….doesn’t it smell great?’….’yeah, not at all like Mr Potato Head visiting a poorly maintained public bathroom’….. ’mmmmmmm’ 
One thing that makes our complex child pretty unusual in the complex world is the absence of tubes.  We've been incredibly lucky.  So much so, I was able to get over the emerging potatoey smell from my living room rug (never, ever drop that stuff….it clings like melted prit stick).

2.       Weaning
Perfect Baby World:
In Perfect Baby World, the introduction of food to your baby is a very serious matter indeed.  Get it wrong, and you could end up with a fussy eater who’ll only eat baby food when they are a baby.  And you do realise it’ll just get worse from there.  They may never eat olives.  EVER.  Just imagine being around your friend’s children at age five as they throw back the hummous and kale leaf salad.  And yours will only eat strawberry Petit Filous and Edam cut into the shape of Iggle Piggle.  Best to intervene early.  Important choices to make between spoon weaning or baby led weaning.  Or hedge your bets with the mixed method weaning (though a controversial choice of course).
Complex Child Land:
The reality of feeding is a little different over here.  Some children are simply never able to feed orally.  And the introduction of food for those who are is often a tense affair with worries about their ability to swallow safely.  For those who are able to spoon feed, it’s a slow process. The puree stage can be less of a stage and more of an enduring reality.   Simply getting enough food into child can be all consuming and self-feeding can seem a million miles away.  Watching online antagonism about weaning methods in baby forums can be an alienating business (when you find yourself muttering ‘weeeiiinnnerrs’ under your breath it’s probably time to log off – not me, obvs.  I’m way to mature for that.)
Our reality:
We were lucky enough to be able to begin weaning on time.  But not in the conventional sense.  Due to the level of gastro pain, everything had to be planned, tracked and monitored, never introducing a new food too soon and recording reactions.  Even now, we are struggling to identify triggers.  At 4 1/2 years old, food all has to be the right consistency.  Self feeding is limited and all meals involve slowly spoon feeding.  It can be tiring.  It can be repetitive.  But it’s also amazing.  He is able to eat and we know how blessed we are to be in that position.

3.       Walking
Perfect Baby World:
This is a mighty simple one.  Your child should, and must be walking at, or shortly after the age of 1.  If they are not walking by then, you have clearly done something wrong (more than likely the formula feeding and lack of olives).   You should probably put them in a baby jumper or something.  What do you mean your best friend’s brother who’s a physio said you shouldn’t do that? Don’t be ridiculous, you’re just not trying hard enough.  I mean they are 1 for goodness sake.
Complex child land:
The reality of the expected walking age is usually made clear by the highly unconcerned shrug of the Paediatrician at age one.   However for some children, developmental milestones are not a given.  Nor are they here for keeps.  Severe illness, or neurological symptoms can cause the dreaded regression that steals away precious abilities and breaks parent’s hearts.  When progress does happen, it is often with help.  Hours and hours of therapies.  Standing frames, walking frames, specialist boots (a word to the men out there.  These boots are heavy beasts, so if your child kicks out in a certain direction…move…move very fast).  But when it does happen.  When all of a sudden, out of nowhere, your child inches forwards.   Or grabs hold of a toy.  Or pulls themselves into a crawling position.  There is truely no comparison to that moment. 
Our reality:
At age 4, Little J is unable to walk and is just learning to crawl.   We are accepting the reality that his wheelchair and all that comes with it is not here for the short term.  It’s here for keeps.  But it doesn’t really matter.  Honestly, it doesn’t.  Because one way or another, I genuinely believe he’ll get there.  What ever ‘there’ is for him.   What ever works for him.  If he walks, amazing.  If he doesn’t – so what.  We’ll just get the coolest chair in town.

4.       Baby/Life Balance
Perfect Baby World:
Time to yourself is important.  In moderation, of course.  Get yourself down the gym.  There’s plenty of babysitters and creches out there.  Go out for dinner.  Get out with friends.  It’s important to take time away from your child.  
Complex Child Land:
Pa ha ha ha ha ha ha ha ha ha ha ha.
Our reality:
Our reality is really nothing in comparison to what many parents of complex children have to deal with.  But, at age 4, we still cannot use a babysitter, or mainstream childcare service.  We still have to maintain constant monitoring in case of a sudden neurological attack and we need to be listening for the apnea monitor at night in case of a dangerous pause in breathing.  As things currently stand, we also have no regular respite care in place due to moving area five months ago.  And in light of the current budget cuts, we know that the support we do receive will likely be very limited. However, we are, undoubtedly fortunate.  We have adapted.  Our boy comes everywhere with us. We are used to ignoring the stares as he comes out to dinner with us and we clatter his wheelchair into the accompanying table whilst he helpfully ‘clears’ the table of anything in reach.  As he gets older, heavier and louder, that may not be feasible.  But for now, we can.  And we are very lucky.  Because he’s a pretty awesome dinner companion.

5.       Sleep
Perfect Baby World:
Sleep is a tricky issue with a baby.  No doubt about it.   But in Perfect Baby World, let’s be clear on one thing.  If your child won’t sleep, it is absolutely YOUR FAULT.  You didn’t read the books did you?  You didn’t learn the techniques.  I think I can guess where you went wrong.   You picked them up.  It’s true isn’t it?  You saw your baby and you picked them up.  Idiot.
Complex Child Land:
In complex child land, the approach to sleep may be unconventional, but a little more rational.  You see it’s pretty hard for a child to sleep with a monitor attached to them, or an alarm that goes off every few hours, or when they are struggling with symptoms.  So we don’t really beat ourselves up about it.  We are all, undoubtedly shattered, but I’m yet to hear the ‘ssshh and pat’ technique get discussed on the Children’s Ward.  It just is the way it is.  So we drink coffee.  A lot of coffee.  With 25 sugars.
Our reality:
Sleep has been an ongoing enigma in our house.   Whilst we are lucky not to have wires or pumps to worry about, for 2 years we managed a child who would scream every night from pain and neurological symptoms.  I was once asked by a doctor how I knew my son was in pain as a baby and not just..well, being a baby.  I can only assume that doctor has no children.  There is a desperation and panic that comes with a cry of pain.  Our baby would stare desperately into our eyes for help whilst gasping for breath, then realising there was no help coming, he would collapse in sobs in our arms.  It was horrific and there was nothing we could do. Night after night.  For over two years.  Then finally, the right medication was found and life changed immeasurably.  Does it now involve vast quantities of sleep.  Erm, no.  He’s pretty partial to a 4am party.  But I really couldn’t care less.  He’s not in pain.  And that is beyond ace.  Oh, and guess what.  It wasn’t our fault.  Despite all the times I questioned if it was something we got wrong. It wasn’t.  We didn’t need sleep training. We just needed the right doctor.


So you see…on most of the babyhood ‘musts’, we completely failed in the perfect.  And it really didn’t matter.  Because, without sounding like the end of a CBeebies programme ‘we tried our best’ (or ‘it’s a Bing thing'…whatever floats you boat). 
And trying is really the best anyone can hope for.  So we didn’t fail.  Instead we learned a whole load of things along the way.  I never knew that 4am was the best time to view the moon, or that it was possible to communicate with facial expressions alone.  I never knew how much fun it could be to do donuts with a wheelchair or how exciting a Wotsit could be.  I never knew that I could be bestest friends with a non-verbal four year old.
And the reality is that traditional perfection will never come.  Our success will be a different kind.  And even if nothing really changes and new achievements are painfully slow. It doesn’t really matter.  Because for me at least, trying is the new perfect.