Friday, 8 June 2012

Perception and conception.

Let us reflect.

After a pregnancy made difficult and unenjoyable by a slew of rubbish medical professionals, our only child was born with Down's Syndrome.  Throughout the better part of that nine months, a diagnosis of gestational diabetes put me under such close scrutiny by these people that it felt impossible to breathe without condescension and interference in my life.  Where most pregnant women have about 3 antenatal visits in the UK, I believe my final tally was somewhere around 19.  Following the birth, not one of these people called to check up on how we were handling the diagnosis but they did send their midwives around to badger me about breastfeeding and fill in more forms.  Guess they don't have a checklist for 'giving a rat's ass about your patients'.

Amongst the stupidity, they fault my son's low-ish birth weight on DS yet haven't ever bothered to ask about my diabetes diet, thus taking into account the very relevant fact that I only put on 5 pounds during pregnancy and ended a stone lighter.  They made errors in case notes that will go into permanent files uncorrected, particularly because I have to beg them for copies of reports.  And still they continue to look and speak down their noses at us.  One genetics appointment left next week and hopefully we can wash our hands of them indefinitely.

Unless you have been through this you cannot begin to imagine what it was like.  It has been particularly agonizing to a free spirit like me who does not accept being told what to do on any level.  Despite how well meaning people may be, I really don't want advice unless I ask for it, quite simply because I have the sense to actively seek out all the information I need.  I am 40 years old with a long list of experience behind me.  I am well read.  I am well educated.  I am well informed.  I have common sense and I deserve to be treated with respect and allowed boundaries.

If you don't, watch me get very angry.

I have been angry for a long time and frankly I'm sick to the back teeth of being angry.  It doesn't suit me.  I wish people would back off already and just let me heal.  But now with this diagnosis our poor boy is in for medical scrutiny.  We are in for a life under the microscope - 'are you doing a good enough job?', 'will you raise your child properly?', 'do you need some extra help?'

We are and we will and we don't.  Not just now.  If we do, we'll ask.  Please give us some credit.

Beyond us, Rukai needs LOVE, not help.  Beyond that, we need people to understand what a shitty hand we three have been dealt in that medical bods are forcing our entire extended family to worry about a ghost.  Because as you recall, Rukai is healthy today and DS 'symptoms' are not guaranteed to appear.  He is developing incredibly well and I'll get back to that on a day I'm feeling a little more upbeat.  Today is blustery and so is my heart.

Now anyone who has children (and probably most who don't) know that new parenthood is difficult enough without all of this additional crap piled on.  Of course my husband is going through the same stress, so after we talk to each other, where do we turn next?  He can switch off.  I haven't got that ability.  But I CAN write.

I've been writing since I was 8 years old.  Back then it was mostly about who I had a crush on but now, it's my lifeline.  Now it's the only way, barring exercise, to get this stuff out of my head.  So as a means of working through this pent up stress, worry, anger, frustration - but more so as simply a way to COPE with our son's diagnosis - I began to share tongue in cheek musings with friends and other new mothers from my antenatal class on Facebook, all of which I've transferred here after those who'd had a good laugh reading it encouraged me to blog.

I began posting in this very public forum with the hopes that the conversation will continue to help me cope, continue to help my new mum friends laugh and perhaps someday help someone else out in the world who may be facing a similar experience.  God, I wish I had something to read that made my belly quake with laughter much earlier.  So I post with humor because humor is what makes me tick.  Humor is what heals me.  I post with humor because my own mother who is 4000 miles away when I need her most taught me that sometimes it's better to just laugh when you most feel like bawling your eyes out.

All that said, aside from heartfelt comments about the worries we are having as parents, this blog is intentionally satirical.

If anyone reading takes offense to anything I have said to date, I am truly sorry that you clearly do not know me well enough to know it means nothing.  I am not sorry for poking fun at my own life and having a laugh with my friends.  I am not sorry for what I have said here.  And I hope that never in your own life will you have to directly face something this difficult and have to try and find a way to deal with it.  The shock of being given such a diagnosis without your husband at your side.  Seeing the look on his face when he finally came into the room.  Standing in the hospital bathroom after your first shower having tried to scrub off the pain, head spinning, wailing with grief and lost dreams and denial and fear.  Trying desperately to grasp what it all means, what you will do next.  I am only sorry I did not see Rukai's possibility at that point as it's only now with that knowledge and the written word that I heal.

I'm afraid I cannot censor my feelings and because I share them, you will find them here, warts and all.  Some may see this as foolishness, others as courage.  I see it as survival.


On a much lighter note, I believe our sweet boy was conceived a year ago about now.  So I will end this post by turning my attention back to celebrating him.

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