Wednesday, 26 January 2011

The Law of Averages

I am choosing to learn a bigger lesson from something small that happened today.
Following an appointment with a lovely dermatologist for the rashes that lurk under all my winter layers, I carried with me today the prescription for two new creams to try and a plan for if they don't work.

So, I went to one pharmacist before lunch with a friend, and they could only provide the first cream on the list.  They said they'd order the other for me which I politely declined.
I then went to another place nearby after lunch and they seemed to have both, and then realised that they'd sold the last of one, so could only do the second.  I asked if I could split the prescription between the two pharmacies and they said I couldn't.  They also offered to order them and I again declined, feeling fine if a little frustrated..

So on my way home walking up my local high street I had one more chance at the big supermarket pharmacy where surely they'd have both.
Wrong, they actually had neither and then tell me that there's a problem with the manufacturers of number 1, so they can order number 2 but don't know when they can get the other.
Polite facade dropping, I'm now quite frustrated and leave trying to be a bit polite though not feeling it.
I huff up the street, sighing and feeling a bit crap.
I then remember that there's another pharmacy between here and home and I'll try them.
Deep breathing as I go, trying not to let it be an excuse for a grump, I fleetingly think that maybe, just maybe, if the first place had cream 1, and the second place cream 2, the third neither, then by the law of averages this place should have both.

And lo and behold it did.  Well nearly.
They had a lotion rather than ointment for number 1, but told me so nicely and kindly, confirming that it didn't really matter, that I took it.  So I stood in the shop feeling happy, I even bought a little celebratory nail varnish and chatted breezily to the girl about her pharmacy exams.

On the way home I decided to apply this experience to various situations circling.

Plans are great but they don't always work out first time.  Or even second.  And often third time lucky turns out to be the unluckiest of all which is when your equilibrium decides to go on strike.
Then just when you feel it's naive to hope that it'll all turn out ok but maybe you can allow yourself to think it anyway, it can and often does do just that.
Not always in exactly the way you planned, but near enough and more than acceptably well.

And I rather like that.

Monday, 17 January 2011

a pause in the purge

I've been browsing old entries, calmly deleting some of the saved but not posted, until I came across this one from that time back in the middle of last year that I talked about in my previous post.
Somehow I can't quite bring myself to delete it.  Not because I want to wallow in the misery and upset (although I do have a whiff of that about me I know), but because it supports me acknowledging how I feel now. Proud and happy about how much easier all the hard stuff feels with some support in place.

I often wonder how people less educated, tenacious, stubborn and knowledgeable get through this.  How they cope or achieve anything at all.  With science able to diagnose more and more intricate chromosomal conditions, there are thousands upon thousands of mums, cast out to sea with only panic for company.

So for whatever reason, I'm going to post this and square my circle.

the post was entitled Cast Adrift

or where oh where has my paediatrician gone?

CW lament (these are the initials of my wonderful respiratory specialist who got us our diagnosis.  The lament is that no sooner did the heart man sign us off, that our only trusted medical person started to prepare us for leaving, especially as we no longer had medical insurance and would have to shoulder the cost ourselves).
horrid iron supplement prescribed by mystery person (one of my many kidney trips to the hospital had us walking away with an iron supplement for low ferritin levels, which gave my boy the runs, but I had noone to tell so I just stopped and turned to google for nutritional advice instead).
urine samples flying round Barnet hospital (it really did take me hours on the phone and weeks waiting to get results, with each sample I sent, repeating myself ad infinitum with fear and frustration rising).
no apointments forthcoming (if you're a mum you don't get through the secretaries, so I didn't know when I was waiting and when I was being ignored).
noone knows who we are (see above)

and the rest kind of speaks for itself

noone can bring it all together bar me
not even his daddy - sometimes especially not his Daddy (sorry xx)

post it notes, big concertina files, blue book, red book, filofax, papers at bottom of bag, order but no order
and in the background, the man who got us our diagnosis and confirmed that our lives had changed for ever, is receding slowly into the distance
and there's noone willing to replace him
how am I expected to do it?
everything's changed but nothing has come in to help with the extra workload.
D new job so no time
no let up for me and I'm having to find more time when I don't think I was coping before
No insurance means lost respiratory specialist, noone else across my boy, who knows my boy, trusts my instincts 
and it's all back on my shoulders.

cor.  poor me then.  lucky me now


Thursday, 13 January 2011

A can do person in a won't do system - but not alone

The first 8 words of this blog title were written and saved back in May last year.  Back when frustrations of being at sea in a system that I didn't know how to navigate were rife.  When fears of kidney problems through lack of information were overwhelming.  When thoughts of how to get my boy listened to and considered for a Statement of Special Needs were in my mind all but impossible to achieve.

As I write this now towards the end of the first month of January, I can see that much has changed.  The system in all its frustrations, lack of funding and incomprehensibility remains the same, but I no longer feel alone within it.

I sat at our genetics appointment yesterday lunchtime with the same doctor I've seen twice in the last few years, and felt protected and understood.  Ironically at a time when I really wasn't crying out to be.  Which  took me by surprise.

She looked at the latest letter from my NEW paediatrician (sorry but I am still quite excited about this) listing all my boy's problems and challenges old and new, working her way methodically through them.  Checking where each had got to, furrowed brow and open apologies that it's taken me 4 years to get what we should have had within months of my boy being born.  Expressing a frustration and regret that I've learnt to lock away because it's redundant and stops me being positive.

She opened the appointment saying how she'd been trying to explain to the med student observing all the complications of diagnosis (or lack of) during my pregnancy.  This was huge in itself because all that time ago it was the lab she's affiliated to that missed our diagnosis on the amnio.  Most people would ignore that, or not reveal to me that she still remembered it at least.  But she just took it as part of the history.

She returned to his still unexplained blueness on the list of issues, until she was happy that it hadn't been overlooked.  She again apologised that I've been doing so much alone for so long and I in return told her that of all the doctors I have encountered, she's the sole member of the group who is brilliant at apologising, even when she's not responsible for the things concerned.

She said "we" should be able to get him a statement because he has a chromosomal deletion, but again relaxed when I said I was happy in the hands of our hopeful new inclusion teacher at our hopeful new school.

She explained the new genetics tests to me, said she'd call with results and explained the possible things they'd find and how long it would take.  She looked at my boy and talked to him so kindly and was genuinely delighted at how successful he is so far.

Finally she came to see us in the queue for the blood tests and told me very earnestly that while she doesn't need to see us for 2 years, that I can call her for help or guidance whenever I need.

In short, she raced her way into my team.  A team that now includes an intelligent and excellent Educational Psychologist, a Paediatrician, a GP, and a few other specialists.  All of whom say how well he's doing, say they don't need to see him until I ask, but crucially know that this is just the beginning of the story and trust me to be their guide.

So when September comes and the community paediatrician and the keyworker step back, and possibly the physio and others follow suit, I now know I won't be alone again.

Even though I know I'm typing into a void here, generally unread, I love that I have this blog.  Here I don't seem to go into coping mode like I do the rest of the time, allowing tears to trickle and sighs to be heaved as I process my life as it happens.

Tuesday, 4 January 2011


I just had an urge to purge and have deleted the other blog I lead you to the other month.
I did it because I suddenly realised that the part of me who is trying my best should not be separate and this year for me, only 5 days in, seems to be leaning towards integration and consolidation. 

So I've joined together the Sara's and want to acknowledge that I'm Trying My Best most of the time, even when it seems like I'm doing my worst.

Happy New Year!