Sunday, 26 June 2016

Sugar Coated Dramas

Two things I hoped would never happen, happened this week. Firstly, I had my first ride in an ambulance and secondly I started a medical notes folder for my youngest daughter.

The ambulance ride I always expected would happen one day. What I never considered was that it wouldn't be Mojo I was cradling, but instead, my conventional, easy, healthy baby. My baby who medically speaking, until Monday, only had her red book and her up to date immunisations to remark upon. I said as much to every single medic we met that day. 'This is my non-complex one' I must have said it at least 20 times. Nurses did double takes, 'I know you don't I? This isn't your usual child?'

This particular hospital adventure began when I went to try and wake Chloe up after a long nap and found she was unconscious. One vomit inducing 999 call later and the paramedics arrived, my mouth was answering their questions, my hands were comforting Chloe's tiny sweaty form but my head was in full screaming meltdown. This. Isn't. Happening.

The experience of trying to wake a child who isn't waking up is not one I ever wish to repeat, the initial eye roll when I thought she was just deeply asleep, tipping into the realisation that she wasn't conscious. It's a nightmare I've contemplated many times, but never with this daughter. It was like there had been some kind of heavenly admin error. As ridiculous as that sounds that is how it felt.

With the cause easily (& thankfully) established as severe hypoglycaemia we headed to the hospital.

While sitting in the A&E waiting room (where the producers of 24hrs in A&E must think I'm so desperate to get on telly that I keep turning up with various offspring to see if they are interesting enough!) I received a call from Mojo's school to say that she was unwell and would benefit from being collected early from school. I should point out too that currently my husband is in Australia working for a month.

Okay.... just hold the line for a moment while my head explodes. Mercifully, my ever-fabulous mum in cooperation with Mojo's wonderful school, was on hand to sweep up the chaos, collecting, feeding and nursing Mojo while I dealt with our newfound medical drama.

Usually if I leave Mojo for any period of time I leave a detailed feeding/meds timetable and multitudes of notes, flow diagrams of what-to-do-if scenarios, you get the idea. Being unexpectedly away from her and while she was unwell was disconcerting. I was drafting emails to my mum with fluid balance calculations and medicine schedules while trying to chase Chloe around with a plastic cup to get a urine sample. Note to self on this, one job at a time, nobody wins when you turn your back to try and pick up the wifi signal and miss the wee (which goes instead, all over the pile of toys provided by the lovely play specialist at the hospital, 'oh dear mummy')

I've always been wary of taking Chloe's development for granted. I've consciously celebrated each of her milestones the way we always have done with Mojo. Chloe's come far more frequently and reliably but they are no less treasured, in fact I think I value them more because I am constantly in awe of little human brains and the monumental amount of awesome things they do in these developing years. We have come to know so many children for whom that conventional development route is a daily battle that I've come to see 'normal' as pretty remarkable in itself.

Chloe's health, however, is not something I've ever really considered. Once we had been to her first 12 week scan and the clear division of her brain was evident, that was that, she was going to be a healthy baby. Why on earth I would think that she would be protected from harm by virtue of having a complex sister I honestly don't know. There is no quota of health per family, no maximum amount of drama per household.

So where are we now? We are left with two likely options for what caused her to go into hypoglycaemic meltdown. Firstly, that it is a problem to do with processing fats in the body. 'It's extremely rare' said the doctor, how I laughed. Secondly and more likely, is that it was just the perfect storm of circumstances, missing breakfast, coming down with a cold, teething, all coming together to cause a crash in her blood sugar. We wait 8 weeks for blood results.

Chloe meanwhile thinks all her Christmasses have come at once as suddenly I'm allowing cake at all hours of the day and night until I can be sure that she isn't going to slip into a coma on me. When the tests come back clear I'm sure it won't be a problem re-introducing rice cakes where for 8 weeks there were Jammy Dodgers, right...?

Saturday, 4 June 2016

Wedding words of wisdom

Should you ever find yourself researching raising children with disabilities, one of the first things you are likely to come across is an article by Emily Perl Kingsley called Welcome to Holland. It's very well known, widely reproduced and generally accepted as an appropriate analogy for the unexpectedly tangential lives parents with complex children lead.

The article addresses expectations. The ongoing contrasts between the should-have-been and the reality. The never-ending succession of things which have the potential to trigger comparisons and therefore, grief.

These comparisons are more easily drawn when dealing with something where expectations are already running high. Things like Christmas, summer holidays or, as was the case for us this weekend, a family wedding.

I am very close to my siblings, they are incredibly important to me (remember Sibling Revelry). So watching my brother wed the love of his life (and I have lucked out in the sister in law stakes too) was a big, exciting, deal.  My brother has a very special relationship with Mojo they have a kind of unspoken bond that has been evident since she was very little. As if that wasn't enough Mojo and her little sister were to be flower girls, pretty dresses, pretty hair, sparkly shoes the whole lot.

It would be very easy to self-indulgently feel sad about the differences between Mojo's experience of being a flower girl and those of an average 4 year old girl. Dress shopping involved me wrestling dresses onto her while she tried to eat them or hide behind the netting in the skirts. There was no 'give-us-a-twirl' and she had no opinions to share (other than perhaps, which offered the best opportunities for chewing). I flirted with feeling sorry for her (and myself) that day, until she started belly laughing at me trying to get the dress over her non-cooperative elbow. I was making the mistake of presuming that the only way something can be enjoyed is in the traditional, conventional way.

And so it was for Mojo's whole wedding experience. She travelled to the wedding wrapped head to toe in towels as I was terrified she would be sick on her dress. The beautiful braids which were very carefully put in her hair by the hairdresser lasted approximately ten minutes before she ripped out the bobbles and clips and restored her characteristic bed head look. How she laughed.

We adjusted her dress to fit her Upsee (an amazing harness made by Firefly which allows non-mobile
children to 'walk'). This meant she could experience walking down the aisle alongside her cousin, rather than in her wheelchair. I'd given this a lot of thought and we'd measured up and dress rehearsed well in advance. We didn't however, rehearse in the tights she was wearing on the day. So when we came to strap her feet into the foot pads in the church her tiny feet slid clean away from her shoes leaving her floating fairy-like a couple of inches from the floor. When it was clear that the shoes were not for staying put, we dispensed entirely with the footpads. Initially my conventional sensibilities felt a pang that she wasn't going to be able to 'walk' like we had wanted her to. Seeing her float delightedly down the aisle like a particularly giddy fairy holding tight to her cousin's hand left those thoughts in the dust.

As ever, Mojo ended up doing things in her own unique way with a huge smile on her face.

I got my proud mum moment and my proud sister moment and there were happy tears all round.

It wasn't just in the Kodak moments that I found peace with the parallel experiences of a non-conventional flower girl it was in the little things, the unplanned, expectation-free moments. Seeing the bride leaving the top table half way through dinner to check in on Mojo who was tucked away enjoying some ipad down time, really moved me.

Love is...
For a day so filled with unusual activity, new people, loud noises and minimal down-time Mojo naturally had her moments and so subsequently did I!. I can't pretend it's always easy to ignore the comparisons but it's only me who struggles, Mojo is completely unconcerned. That is what I need to remind myself of when things feel a bit 'Holland'.

At the wedding reception each guest had a card on which to write their words of wisdom for the newlyweds. I was distracted trying to keep Mojo entertained and happy and fed. I'd just spilt an entire bottle of feed on my cream shoes. Unsurprisingly I had a total mind blank. I didn't have a single word of wisdom to offer. It was only when I had time to reflect on the day and indeed reflect on the five years since I married my own Mr Right that my 'words of wisdom' arrived. And so...

Dearest G & D,

Be happy, be truly happy. There are no rules about how life should be enjoyed. No formula for contentment, your happy doesn't have to look like everyone else's it just has to make YOU happy.

Be prepared for happiness and joy to come heavily disguised, sometimes convincingly disguised as disaster or heartbreak. Be prepared to look and to find joy in unexpected places. There is beauty in learning to value each individual moment of joy, all the love and all the laughter. Embrace the grey, the difficult days and the challenges, the tears. These things don't spoil the happily ever after they enrich it, they build you and they reinforce your love.

You have done the difficult part, you have found each other, you looked further than most would ever dream to, you overcame an ocean of obstacles. Your story will be unique and beautiful. If you always look to each other first in all the happiness and in all the sadness there you will find your reason, your purpose, your anchor in the storm.

Be happy, be strong, be together. We love you both.
L, B, M & C