November December

Here's what's been going on with the little man:
The govt has decided he(and other little kids) can't have the second half of the swine flu vaccine but they can't guarantee that half a dose is sufficient
Husband has left job with best health insurance policy in the world so we've got the clock ticking on getting the cardio consultation etc in the diary and I have to work out how we do all we have to do without sneaking out to the private sector every now and then to help move things along.
He's still intermittently blue and we've got renal tests in the pipeline, but on the whole he's fabulous, talking, learning, running around and being gorgeous
Here's what's been going on with the big little one:
he's loved his first term at Reception and is trying to work out who he is and how naughty feels every now and then.
He and his classmates are testing the wonderful Moss Hall Infant School with their presence, simply by having been forced on them. But the school are amazing, the relief of the parents in our class is palpable and as a result I've named us "the gratefuls", because we really are!
He's also pretty obsessed with death and dying and questions about that. D wondered if I talked too openly about my late Daddy and the great aunt who popped off last year. I think he's just a sensitive inquisitive perfectly normal little 5 year old.
Here's what's been going on with the big man:
He's finally left the safe job. The job that helped us begin to dig ourselves out of the hole that the most expensive year of our lives, followed by the life changing diagnosis of our magic man, helped us fall into.
He is, I believe, about to finally achieve his potential, something that I have always known is out there for him to take.
He asked me why I was alright about this, obviously thinking back a few years to other job and house and money related conversations around the kitchen table. I don't know why, but everything feels back on the right path. Like we've been down and fighting for so long that I'm no longer scared of whether and how we'll cope. And secretly, I feel a bit optimistic that we might be on our way into a nice new phase for our family.
Here's what's been going on with me:
I had an amazing trip to New York, booked to my complete surprise by hubby. I shared my time between the lives of my darling friends C and N and was spoiled rotten. Most importantly, I lived according what I wanted to do for a whole 4 days, not what was needed of me. I floated through the time change and the space and it was just what I needed, without even knowing I needed it.
I'm mulling subconsciously on the new kids stories for our Marble Books and beginning to flex my literary muscles again.
And I'm at home coming to the end of the first of my two weeks off for Crimble.

I am loving being with my kids, loving seeing my D, loving not being ruled by obligation, loving cooking, hanging out in the mornings not in a rush, recharging, cuddling, playing, drawing...and I'm very very thankful for this time indeed.

Swine Flu Vaccine for L part one

We did it, we got it, he was very very brave and thankfully showed no adverse side effects besides a bit of raspy breathing and extreme tiredness. He's not really looking very well in general right now but we're carrying on as normal and will do the booster shot in 4 weeks time.
Two days before the vaccine I had a horrible reminder of how nights with L used to be, before we cleared the obstruction in his airway and got our lives back.
He took a bad turn during dinner, had a temperature, was so upset after he went to bed and because of the cold he had his breathing was terrible.
In the wee small hours of the morning I lay with my little boy, trying to work out what to do and listening to him labouring to breathe once more. Each breath took such effort and the memory of that movement and noise made me realise it was a year almost to the day since his operation.
I wondered then as I have a few times recently, how any of us managed to cope with all that stress and confusion of knowing that our baby wasn't breathing and we couldn't do anything to help.
It's testament to his strength that he thrived at all for the 6 months that those tonsils and adenoids hid and did their damage. And it's testament to mine that I got through those nights and continued to face all the scary results that we got along the way, until we found the actual cause.
So Sunday 12am, there I stood with a bag packed for us both, really trying to retread those neural pathways of how to be emergency mum, having forgotten when I needed to press the alarm that would take us to hospital.
I finally agreed with hubby that perhaps the safest thing to do was stay here and watch him closely rather than take a trip we weren't sure we needed and expose him to unnecessary hospital germs.
So the next morning after no sleep I was glad to see Louis looking brighter, and proud to see that we'd coped with it at home.
Has it really been such a great year as to not have had to use that skill for so long?
For that, and for every sweet and unobstructed breath he takes, I am forever thankful.

By George, I think she's got it!

very middle class comment alert....
while in therapy last night (see?) I realised as I gently ranted about all the stress that has been happening (waiting for 8 weeks for test results for my little boy for some horrid disorder, finally got them, all negative but the problems remain), work stress, blah blah
I realised that I am not feeling as bi-polar as I was, all wooo things are great, or eeeeuuuuugggh, things are awful.
I was just sitting there, talking calmly, looking at my emotions, feeling what I was feeling, but wasn't numb, wasn't angry, wasn't elated, wasn't crying...was....SOMEWHERE IN BETWEEN

Thumb ridges and other stories

today on the tube I found myself idly tracing the line of my right thumbnail. Waking out of my lethargy, I realised that the deep ridge that I became aware of in July, had finally reached the tip and was one emery swipe from oblivion.
odd way to start I know, but stay with me...


So I've been thinking recently about the physical side effects of stress. How the body responds to the adrenaline rush of stress, you know, fight or flight and all that...
In cases of long term stress (horrid stuff like bomb or rape victims and those with PTSD, or even parents of kids with disabilities) that rush of coping adrenaline doesn't get to go back to the resting calm state because the "threat" is constant.
So where does all that adrenaline go and what does it do to your body? your heart, your lungs, your skin, nails, all without you knowing? What long term physical effects are storing up in my cells right now.
You see I'm pretty good at making sure the kids and hubby get their 5 a day, eat a balanced diet, get exercise, but I have to really push to remember I need to do that too.
Which leads me back to the tube today and that thumbnail.
I drew a pretty picture in my pretty pink notebook back in July 10th. It was of my thumbnail in profile and it showed a ridge about 3/4 of the way down, a deep, marked "what happened there?" kind of ridge.
Charting it back I calculated that this "body to thumb assault" happened back in April, just as the postman delivered my letter about Jacob's invisible school place. Now here we are at the start of September and the ridge has run out of nail as we prepare for him to start school in just a few weeks. In fact, you'd never know it was there.

When I went into therapy over 2 years ago, I labelled myself as searching for long term coping mechanisms for this lovely life I'm blessed to be challenged by. Last night as I came back to this safe place after the summer break, I realised that was a crock of shit.
2 years on and I still haven't looked at the long term, partly because I get frozen in a panic of coping due to the fullness of my day to day.

What's been going on in my body, my heart, since the "life" in my life happened back in Summer 2003 with the diagnosis of my mum's cancer and everything since.

So I'm making a short, quiet promise to myself to try and look closely at changes I need to make to my life. Because if all the pressure and upset I had over those last 5 months due to school could do that to my nail, what else might be lurking inside from the last 6 years?

Patience

I seem to be undoing all my hard work these last few weeks
So long patience.
Sayonara to not worrying about things that haven't happened yet.
When was the last time I breathed properly, or found some time for me, or sat on the couch, nicely out of focus, relaxing and clearing my mind?
Looks like I'm back to overwhelmed.
Back to focusing on all I have to do and having no time for anything else outside of that.
I'm sure I'm listening as I talk to people. I know I heard every word that my darling sis said on the phone at the weekend but can I recall a word of it now? Not really, well at least, not the nice words...there's a shadow of the scary "I'm worried about you" ones but I don't really want to look at those.
New childcare arriving in the country tomorrow.
Been writing a dossier on how to run my life for me at home while I'm at work running everyone else's. Work is my sanity but also my undoing, because it takes me away from my babies (I know they're not babies, but I can't help talking about them in that way when I express my longing to be with them more)
I do know that working is right for now, and is necessary, and I'm good at it. The kindness of employers makes me grateful, and I get to do all the hospital stuff I need and I know what it's done for my confidence to be back doing what I did for so long and so successfully.
But I also know that I can't go on like this forever.
Start planning now for the day when I come off red alert and might want to think about what other options I have out there.
Aren't blogs funny? writing and writing into the ether...noone reading it and once I get over the slight humiliation that comes from the act of writing, and consider the fact that I'm not doing it for anyone but me, it almost feels enjoyable.
but it's still odd. writing into a void and... actually, the humiliated fear feeling I get each time is that maybe someone is reading it and I'll be rumbled.
rumbled for what I don't know.

Underlying Health Issues

Underlying Health Issues.
Three words that you read as the excuse for all the recent swine flu deaths.
I see these words everywhere, in all the stats and all the news stories and the macabre mummy in me wants full details of what they mean.
So far I've guesses at tonsilitis, some kind of lung thing and probably lots of colds that happened to be raped and pillaged and mutated by H1N1.
You see I'm so used to interrogating every medical aspect of my little man's life, I'm thinking of studying medicine so I never have to rely on a doctor's opinion at all. So when I read something like this, something that could easily be the difference between getting over a case of swine flu (which did I mention is just one away from us at work, in the family, at nursery...) I need to know more
I need to pry and have details because my house is full of underlying health issues, complicating the ordinary run of our lives and meaning I have be as observant as I am.
So when does an underlying health issue become an overarching excuse for tragedy and illness?
Is there more I can do than ruthlessly medicating to get rid of the horrid ear infection in one boy, and checking the temperature and watching and listening for the slightest physical sign of change in them both.
yet there's a rattle in my chest and a cold that won't go away that I'm seemingly in denial about.
does that count as Underlying?
can my underlying infect them and turn into theirs?
it's all so confusing and I fear I've finally tipped into neuroticism?
how do I avoid us being part of those headlines?
how do I get them to take my vulnerable little boy seriously?
and will we get to go on holiday on Sunday?

ooh, some good news...

I've been worrying and fretting quietly to myself about whether I can handle this school appeal tomorrow and it's been a genuine concern about what it would do to my sanity.
I now find myself in the unfamiliar situation of feeling happy and calm. That's because I just had a call from admissions telling me that we don't need to come to the appeal, because the school had agreed to take on more children and therefore Jacob has a place. The nice woman on the phone probably hadn't been prepared for the gushing and thanks and general outpouring she got from me.
I want to know how it's possible and what we need to do but also, suspicious me wants to wait for the letter so I know it's not a big joke.
So, this not a post blarting on about how screwed up the appeals process is and how cruel the bureaucrats within it are.
This is a post to say I'm smiling, I don't feel sick and I think I can begin to plan a workable way to look after my kids, work full time and get back to the business of everyday life.
hooray.

Somewhere In Between

So often I find myself overwhelmed, then I pull it together and slip back into underwhelmed.
I am very excited to know how it feels to be somewhere in between.
Middlewhelmed. Midwhelmed?
sounds a bit rubbish...maybe once I coin a linguistically acceptable phrase for it, I'll be on my way there.
any suggestions welcome.

School Appeals Part One - Friday 3rd June

So, fighting for L is part of me and I’m getting better at it. What has totally thrown me in the last few months is that no sooner did I find help and a way forward, than the other simple stuff decided to misbehave.
We moved to Finchley over 3 years ago, pinpointing schools, buying a house in walking distance from them, and confidently refining our choices to cover whoever Louis will be when the time comes.
A sunny May day was the last known sighting of my inner composure, when we received a letter to say that J had not been offered a place at any local school for September. Not a place at a bad school, not a place at a good faraway school, but a place nowhere.
All around us as it is so easily and punishingly compelling to note, friends and neighbours with easy simple lives and easy simple children, got into the schools and got those places while we entered a vacuum.
We fought, we emailed, we called, I sobbed and we prepared with reluctance our appeal while meanwhile we stamped so loud and so high that they nervously found us a place in a “local” school. A school with no tube station to allow us full time working parents to do drop off at. A school that’s trying to turn itself round, and will probably do so quite soon, but that I'm not yet sure I trust will know what to do with my L.
We physically don’t know how to get there or work it into our (10 specialists covering our little one’s) lives. We have lost our support network of friends, all of whom are going to the schools we wanted. We have a child with so rare a disorder that he’s the only one on Great Ormond Street’s books like him and yet, so we were told today and have been from the start of the process…cannot be considered under exceptional circumstances.
Because apparently we’re not exceptional.
Apparently my boys are not special.
Apparently having a sibling with a rare disorder doesn’t mark that sibling out.
That sharing a room with that brother and snapping his head round to evaluate the cough just as I do on a chesty day, and knowing whether we need to get the meds, is just the same behaviour as any other four year old boy.
We don’t stand a cat’s chance in hell of proving that a reasonable admissions board should have taken this all into account. The 23 pages of information, documentation, L’s catalogue of specialists, the impact of this life on J. The chunks that each page took out of me as I dutifully put down on paper what we do every day as full time working parents and then tried not to be overwhelmed by how big it all is.
To sit for two hours, and then enter a room, and no sooner had we sat down, be told in no uncertain terms that we couldn’t win, they were sorry and all, but don’t bother. And yet there we were, bothering, because it was our legal right to do so.
Four hours on and I still feel in the little tunnel I entered to stop the panic attack and being overwhelmed by tears. I can’t remember a word I said, I can’t remember why we started it, and we have to do the same thing all over again for the next school next week.
So I want to know, even though of course we are blessed and things could be so much worse, when I might get to come off red alert for just a short period to re-sole my fighting shoes.

Where it all began

I started blogging two years ago when my littlest boy L was diagnosed with a rare genetic disorder called 18p deletion. The emotion, stress and pressures of our lives at the time sent that blog account spinning towards the recycling bin soon after.
Today, Friday June 3rd 2009, fresh from the first upsetting and draining school appeal for my J (that I’ve just attended and lost) I am back, wanting and needing to howl at the (virtual) moon.
I’ve lived a lot of life in the past five years with deaths and illnesses and the life-changing news about my little L and his magic DNA. To spend 9 months of pregnancy, ill, scared and knowing something was wrong with my baby only to be treated like a neurotic hormonal woman. To spend a further 9 months rushing that child in and out of hospital laid flat by simple colds, breathing so loud you could hear him in the other room, missing milestones and silently imploring me to keep banging until someone heard. Clarity came with the grey haired wisdom of the paediatrician who listened, checked and finally found what I always knew had been there. To spend the next two years acting counter-intuitively as a loving mother by continually telling people that he wasn’t normal, that he isn’t perfect, and having to self diagnose his now numerous medical, neurological and behavioural disorders.
Two years on and I realise my DNA changed at the beginning of this journey that with tears in my eyes I’ve just read back to myself. But because of the magic and wonder, curls and smiles of my glorious boy, those ripples haven’t started moving out yet. Life is just the same for everyone around us. One family and their reluctant inability to get it. The other that gets it but is too far or busy to be part of the support network. The medical world and the lack of facts that they like to find comfort in. The authorities who hide under paperwork and red tape, hoping you won’t find all that they could be doing for you. There’s no box to put L in, or support group to help shout and bang my drum and having banged and crashed and seen with such clarity for so long alone, I find it almost impossible to ask for help, even when it presents itself.
My battles are just beginning and I am made whole by knowing that this is my job and that I wouldn’t trust anyone else with it. And nor would he. I feel his pain and am surgically attached to him when communication or his high pain threshold means that he can’t recognise if something bad is going on. So two years on and life is no less confusing or lonely, except for the small and globally scattered handful of 18p- parents that I found, was overwhelmingly welcomed by and despite them feeling like the ghost of Christmas future, could not now do without.