Monday, 31 March 2008
6 passports located (3 expired ones and 3 current ones)
5 days' worth of Disney passes printed off and ready to be claimed
4 plane tickets sitting with the passports
3 sets of hold baggage beginning to be sorted
2 matching sunhats neatly folded
1 tired mother still nowhere near sorted!
I found the missing passport, this is good. On the other hand, so far, I have not organised any dollars, I have not arranged to pick up Mog's nappies, and I keep forgetting to buy a slow release fish food stick thing. I tried to collect our letters of medical necessity today (to allow us to take drugs, ventilator, food pump, etc., onto the plane), and despite the receptionist being able to see them in the system she could not find them in the office. So I need to go back and do that tomorrow. Hopefully coinciding it with a nappy collection time.
I have lost Mog's swimming costume. She has been borrowing Little Fish's swimming costume, but unfortunately tomorrow they both need costumes at the same time. For some reason I appear to have an ancient Barbie costume which may fit one of them; hideous but better than nudity in the school pool.
The van has been fixed and is now running beautifully. 12 month's tax, MOT, service and a new clutch. It would probably be a good time to sell it. But it's definitely not a good time to buy a replacement.
And I, I have found the best ever recipe for chocolate chip cookies. I'm not sure yet whether this is a good or a bad thing, so I'll just say, it tastes just as good uncooked as cooked, and beats anything else I've tried in the "vanilla cookie with chocolate chips in it" line hands down.
On which note, it is late, I've been swimming with the Guides, so I am going to grab a cookie and head to bed. Night!
Sunday, 30 March 2008
see more crazy cat pics
Urgh. Clocks went forwards this morning. Mog decided to celebrate by waking up at 5 new time, 4 old time. Little Fish found it necessary to check my presence every hour throughout the night.
Mog slept beautifully through church to recover, not really an action I felt able to imitate. Query: how is it that she can sleep through ampilified music, a room full of 5-11 year olds singing and shouting and PRAISING GOD and raising the roof, and yet be awoken by the sound of me turning off my bedside light?
Oh, and to all those who asked - yes, I do have plenty of alcohol gel* and yes, I have some nice smelling handcream**.
*for hand cleansing purposes
**which unfortunately leaves me itchy, so I also have some special stuff which does the job nicely but smells eeeeeeevil.
Saturday, 29 March 2008
Something every little girl should have.
A Thomas the Tank Engine Lego set! "Play, Mummy, play!". Thank you Grannie and Grandad. She has gone to bed one very happy little girl, full of plans for tomorrow which include more "play put that that there" and lots of cooking too apparently.
No pictures of the cake as it just doesn't look the same when it has had chunks cut out of it. But a very cool car cake with giant chocolate button wheels, and frogs and nodding dogs as passengers. Thanks again Grannie!
We are sorry we missed our get together, but Little Fish has still had a generally excellent day. Mog seems to have enjoyed herself too.
Mix meds, wash hands (2).
Start tube feed, administer meds, wash hands (3).
Change pad, wash hands (4).
Clean stoma, wash hands (5).
More meds, wash hands (6).
Change 2nd child, wash hands (7).
Make breakfast, wash hands (8).
Make coffee. Drink coffee.
Wipe faces, wipe tables, wash up, wash hands (9).
Loo again, wash hands (10).
Get dressed, dress child 1, change pad again, wash hands (11).
Dress child 2, sit child on potty, wash hands (12).
Clean child 1's eyes, wash hands (13).
Clean child 2's eyes, wash hands (14).
Empty nappy bin, wash hands (15).
Take all rubbish bags out for the bin men, wash hands (16).
Come back into house, discover child who was sitting on potty has crawled off potty and halfway across bathroom floor, spreading poo as she goes. Clean up the mess, wash hands (17).
Put a load of washing in the machine, remember the 2nd bin, bag up the rubbish and take it outside, wash hands (18).
Administer painkillers, wash hands (19).
Discover child 2 has now found child 1's special feeds and has emptied one carton on the floor. Clean up sticky mess, wash hands (20).
And it's not 10AM yet!
Friday, 28 March 2008
"One Wednesday morning in November 2002, I had a phone call from my social worker, telling me about a little girl. Five months old and brain-damaged; parents at the end of their tether. Would I be interested in taking her for a few days? Nothing was definite at that point, Imogen was in hospital and her parents might still decide to take her home themselves."
Click the quote to get the rest of the story - my story starts about halfway down the page.
As we walked out of court, I gained a daughter.
I also lost something. I was approved as a fostercarer in September 1999. My first fosterchild moved in the day after I was approved. Since that time, the longest I have ever been without a fosterchild has been ten days. Whilst I still have children, whilst I now have children who can be considered legally my own (although I have a problem with the idea that anyone can claim to own a child, people are not property), I am no longer a fostercarer. I do not foster any more. My occupation now is simply "parent". I'm delighted to be that parent, but it is still a little strange to me.
I seriously doubt that I will never foster again. This is a hiatus, not the end of an era. There will come a time when my skills are needed, and the phone will ring. But until then, for now, I am not a fostercarer.
This is a happy day. Mog wore her smart green dress, she looked beautiful, and she enjoyed all the attention whilst waiting for our moment in court. The judge thanked us for bringing joy into his day, a day otherwise filled with difficult and negative child and family law stuff. Mog sat up late tonight (until she couldn't hold the seizures off any more), we had a nice meal, Little Fish gave her lots of cuddles, and we enjoyed being a family. We've been working towards this day ever since we knew that Mog would not be able to return home to her birth family. I hope today is a happy day for them too - the knowledge that Mog's status in their lives is unchanged; she remains legally as well as emotionally and physically a part of their family whilst gaining legal status as a member of our household too.
It's also a sad day. For four and a half of these five years, Goldy was there to hold Mog, to laugh at her and to tell her stories. Goldy loved parties, and would have loved to have been able to be a part of this one. Always, when Mog was younger, I pictured Goldy being with us in court for this day. I can picture her now, clearing her throat loudly and stealing some of the limelight, finding a way to somehow stain whatever smart clothing I would have put her in, and demanding pizza as a celebration afterwards. We have a bottle of champagne, and my mind is drawn back to a different family celebration - in my memory, Mog is lying under the table, having been worn out by a morning of having people pay attention to her. Goldy is pulling on my arm as we toast the guest of honour. I hold a glass of champagne to her lips, she sticks her tongue into it, and, as the rest of us raise our glasses "To Harry", Goldy raises her voice and loudly demands "BEER". She would have enjoyed today, she would have loved the rain and the wind and arrived in court as high as a kite, fizzing on the weather and the emotion all around her.
We included her memory. Mog wears Goldy's "teddy bear skin" blanket, my smart court clothes are the ones I bought for Goldy's funeral, Little Fish has the capacity to be just as loud although in a very different way. Goldy will be forever on my mind and in my heart; I would have liked it if she could have been here in our lives still too for today.
She isn't. My two girls are though, and are both sleeping sweetly after an exciting day. Tomorrow Little Fish is the birthday girl, and a slew of presents and cards dropped through the letterbox this morning for her. Today was a happy day, tomorrow will be a happy day, and I will be heading for bed myself shortly. It's ok I think to take a few minutes in the meantime to be sad for what is not, as well as thankful for what is.
Thursday, 27 March 2008
One set of travel insurance obtained, all documentation currently missing.
One set of medical letters being prepared, one bottle of powdered antibiotic being prescribed, one new set of prescriptions being obtained.
One growing sense of panic at the inability to find any kind of confirmation of our hotel booking.
One sense of disbelief at the amount of extra carry-on baggage we are going to need - two able bodied adults, each carrying one disabled child, plus the four bags with in flight necessities, plus feed pump, suction, nebulizer, ventilator, battery for the vent, and positioning equipment. I suspect we'll compromise with the positioning stuff.
And a dawning realisation that, once I've sorted all the logistics of packing and getting permissions etc., I am still going to be trapped in an aeroplane for too many hours with a very busy and active toddler. On balance I think that might just turn out to be the biggest challenge of all!
Wednesday, 26 March 2008
I should be at housegroup tonight. Our housegroup is organising a conference, elsewhere in the country, on Work and Faith. I missed out the early planning stages of this, due to Mog's op and other problems at the start of this academic year. I'm not attending the conference itself (childcare stuff plus general fear), but should be helping out with the planning. It doesn't help that I have no real idea what we're talking about, what I should be doing, what shape this should take. Give me a group of girls and I'll get them playing silly games. Give me a hypothetical room full of businessmen and clergy, and ask me to find something about Work and Faith, and I'm running scared. Grown ups. Eek. Can't I do something unobtrusive like go and change nappies or bake biscuits? Thought I might have been on a winner with the biscuits, but sadly the conference centre is catered.
So instead I've been given a small pile of information to sift through, to look at things which should go on the promotional material. I've had it a long time. I don't know what to do with it. I am an intelligent woman, but give me this paperwork and the meaning slides through my fingertips as I read it.
Be that as it may, I managed to scribble a couple of things together ready for the meeting tonight. I also had some articles to print out to take with me. Already running late, I hit the printer button and managed to print about half of them before the ink ran out. Grabbing a pen I wrote down the URL before grabbing my coat and heading out of the door. Returning seconds later to turn the house upside down in search of my keys. Mog, still awake, laughing at me. Sitter picking up on the fraughtness of it all and sifting through the many items on the bathroom windowsill.
Eventually discovering the keys under the kettle (why? why under it? and how?), I headed out, a mere 30 minutes late. Arrived at the house to find all the curtains open, all the lights on, and a suspicious lack of extra cars around. Knocked at the door and was answered by the son of the household. Extremely polite, but no, his parents weren't hosting housegroup that night, and no, he didn't know where they were instead. Marvellous. I have no idea where they are meeting, and by the time I return home to check emails and find out, I will be over an hour late, which for a two hour meeting is just silly.
So, I head to Tesco's instead. Except I don't; I find myself heading towards the other end of town, carried away on the one way system I had inadvertently entered at the wrong junction. Thank goodness for roundabouts. Back on track, I walk through a deserted Tescos. Empty aisles, empty shelves, vast crates of crushed cardboard boxes where customer services are usually to be found. And no Ecover washing up liquid.
It's not been a great day; Little Fish's power chair got trapped in the sunroom, and has ripped holes in my new lino. I was told Bob would be coming and he hasn't. And I have a difficult situation with a neighbour; something I've been expecting for a while, but which is now going to cause some complications. I feel at least five paces behind everything I am supposed to be doing. Not fantastic.
Tuesday, 25 March 2008
My bank card hates me. Remember this? Another new card, and it's still doing the same thing. Now there have been times in the past where this could possibly be caused by a lack of funds. But since Bob has still not finished, he has still not been paid; there is therefore several months worth of Bob fees sitting in my account. Enough that whenever I walk into the branch, the cashiers try to sell me new and interesting ways to tie up the money. Certainly enough to pay for the odd little luxury like a week's shopping. Or, as today, a year's car tax. The card has developed a new and irritating quirk; it will work as a chip and PIN card but not for "card not present" transactions. So no internet payments, no telephone purchases. This is not helpful. It's not disastrous, since my credit card will work for these transactions (although, sadly, not for the chip and PIN ones), but it is frustrating. I don't want to be paying for things with credit, I want to be paying for things out of my bank balance. I especially don't want to be paying for car tax with a credit card; it's more expensive that way.
If this were a problem caused by lack of funds, I would not be as cross. If this were the more common problem I have with the credit cards (I don't ever use them to buy things in shops, so whenever I try to they get flagged as "unusual activity" and turned down), I'd be annoyed, but vaguely understanding (depending how apologetic the person trying to call me to authorise it was being at the time). But this is my card which I use daily, for everything. It's the card the bank wants me to use instead of writing cheques. The card I use to withdraw money, to check my balance, to make payments.
So, I phoned the bank again. Last time I did this, I was on hold for 45 minutes. When the person answered, I accidentally shut off the telephone, and had to start the whole thing again. Despite this, I remained polite, even as I was told I had dialed the wrong number and would need to start again with a different one. Apologetic member of staff, new card issued, problems solved. Until today.
I phoned again. Right number first time, phone answered within 2 minutes. Not bad. I choose to view the accidental cutting me off instead of putting me on hold as unfortunate but not intensely irritating. Phone back, longer wait, but speak to a different member of staff. Who insists I must have changed my PIN. I point out it's the non-PIN related transactions having the problems. Consultation with colleague. Must be a problem with the bank balance. Nope. Then must be a problem with the card. Despite the fact the card isn't actually present for these transactions, and that there are no recorded problems with this card. They'll send me another.
I'd be pleased, except this will now be the third, possibly fourth card I have had in an attempt to find one which works reliably. And except that we are off on holiday in just under 2 weeks; there is now an even possibility that I will be flying to the US without a working bank card. The staff member just suggested I took out enough money for the whole of the holiday. Marvellous.
Hang up, after the man at the other end of the phone invited me to shout at him because he was a representative of the bank and I was therefore entitled to vent my frustration on his shoulders (query: is this a new effective anger management technique? Guilt the caller into defending the bank's practices? Or was this a man who really did genuinely feel for my situation and appreciate the difficulties of having a randomly not working bank card? Oddly disconcerting, either way).
So now I'm back to watching the post until the new card comes through, at which point I will have to yet again change various automated payment details, put the card through its paces in several different situations, and hope it works for a little longer than three weeks.
I'm struggling though - I really don't see how it can be a problem with the internal workings of the card, when the card itself isn't present for these particular transactions. I had better warn the friend we're off to Florida with that she may find herself footing the bill for our expenses out there; I wonder how she'll take that? US visitors do please tell me, do your shops take chip and PIN or signatures for card payments? I can't remember.
And now Mog's pump has beeped, her litre's gone in (taken a little under 16 hours today which seems incredibly slow), and Little Fish has not yet woken up (she's going through a bad dream patch and keeps waking up scared of creases in the bedsheet. This is not a good or helpful phase to be going through), so I am off to bed myself.
Oh, and was pointed out to me earlier today, my baby brother has a fiancee, not a fiance. Apologies to both of you!
Monday, 24 March 2008
Well done on remembering to move the washing up liquid, soap liquid, alcohol gel and fish-bowl-scrubber out of reach, well done on removing the medicines bag, and on managing to wedge the drawers shut so she couldn't pour bubbles into them.
However, once the water has gone, and when the child refuses to leave the sink and be wrapped in a nice fluffy towel, if you decide to walk out on the child until they are ready to get dressed, do please make sure you haven't left a stack of chocolate on the windowsill.
Sunday, 23 March 2008
The perfect guest selects a gift from the registry, has it delivered to the bride in advance of the ceremony, and keeps the receipt in a safe place in case there is a problem. I lose the details of where the couple are registered, select a nice but random gift (actually, I'm not sure that this is imperfect; even if I had the gift list I still prefer to give something which is personal to me as well as to them. Then again the perfect guest could probably locate something on the list which would be just that), have to send out a last minute plea for wrapping paper and finally manage to cover the box with crumbs from Hot Cross Buns. Did at least manage to remember to bring it with us though; although sadly this imperfect guest did forget to take it out of the van until much later on when the table for the gifts was no longer in sight.
The perfect wedding guest decides on her outfit early, and checks that it fits before the morning of the wedding. And that's the last I'm saying about that!
The perfect wedding guests arrive in good time, neither too early nor too late, and take their appointed place in the church, where they wait quietly for the service to begin. I bring two small children in wheelchairs, require furniture to be shifted, and then have to make a break for the loos to decontaminate one child from the car journey.
During the service, the perfect wedding guests sing tunefully and with gusto during the hymns, and sit quietly and attentively during the prayers, sermon, exchanging of vows, and exquisite solo musical interlude. A two year old child is never ever going to be the perfect wedding guest! Not only do I bring the toddler, I also come equipped with a Mog. Mog is musical, Mog loves to sing. Mog sang loudly - tunefully, but loudly - throughout the solo pieces as well as through the hymns, and shared her appreciation at the rest of the service too.
We had a good time. Lovely to see all the relatives we only ever manage to see at Weddings and other Family Events (and yes, both Family (ours) and Events (of the kind we have) definitely qualify for capital letters!), and absolutely wonderful to see my cousin so radiantly beautifully happy. An unusual (by today's standards) service - traditional not so much in the words spoken nor in the hymns sung, but in the emphasis on Ephesians 5. Not something which features heavily in most weddings around here.
The perfect wedding guest probably manages to stay for most of the reception, but unfortunately bedtime happened immediately after the speeches so we made a hasty farewell and headed back to our hotel room. Now in theory we had been booked into the disabled room; in practice we had an ordinary family room. This is a mistake we will now repeat; the accessible room does indeed have a nice bathroom with a wide door, but the family room has enough beds for all of us. One day hotels will realise that simply being disabled does not automatically preclude one from having a family life (and also that children can be disabled and many of these children prefer not to share a double bed with their parents), and be more flexible in their provision of beds. Until then, we'll stick with the family rooms and settle for carrying children into the bathroom.
Little Fish settled on one bit of bed, Mog settled on a trundle bed neatly propped up with the bolster from the settee, leaving me a double bed all to myself. Luxury - usually I share this with one child and have another child on a duvet nest wedged between bed and wall. For once, Mog settled without her music and the noise of Little Fish's ventilator did not keep her awake. Little Fish always sleeps - plug her into her ventilator and as her breathing switches off so does the rest of her and she's down for the night. Lovely.
Woke up to a choking Mog and a curiously blue/white light from the window. Snow. Not a total surprise, having driven up through hailstorms and having had blizzard warnings from fellow guests. But still prettier to look at than drive through. Mog seemed a little uncomfortable, and so I cuddled her in my own bed for a while to see if we could both settle down again. She choked properly at one point, so I flipped her upside down and let her cough things up, before deciding it was probably time to start the day. After the big choke, one much happier little girl. Two girls dressed, one mother dressed, one set of grandparents, one great great aunt, one uncle and one fiance all dressed and organised (thankfully I was only responsible for the two girls and the mother, i.e. myself), we gathered in reception and prepared to head next door to the restaurant. Where we made the ever-pleasant discovery that the hotel did not provide breakfast anymore. Joy.
A hastier than planned checking out of the hotel, into cars, skidding through two inches of snow in the carpark and out onto the thankfully gritted main roads. Watford Gap services provided a very welcome breakfast - Mum introduced me to the pleasures of the almond croissant. Bearing in mind paragraph three, this may not have been the most useful discovery on the planet! It was as we were eating croissants and drinking coffee, that Mum spotted the gap in Mog's mouth. That choke in the morning was her losing her first front tooth. My little girl now one big girl with a gappy toothed grin. She was very pleased someone had finally noticed! Oddly enough just before her big choke I'd been wobbling her upper teeth, which have been loose for months. This was a bottom one, and the other bottom tooth is also very loose. Wobbling it causes her to shoot dribble, gag, and breathe incredibly noisily. I have a feeling we may have discovered the cause of her recent breathing issues. I hope so - a nice straightforwards if slightly unusual tooth related issue. She did have dreadful problems cutting teeth as a baby; not being able to chew or bite on anything they took forever to come through, and she needed lots of brushing and rubbing to help cut them. So it wouldn't be a total surprise to any of us if she had a few problems losing them too. My one minor disappointment is that I don't have the tooth itself - I suspect she spat it onto the hotel room floor. And if she didn't, then it's on its way through her body, and I'm not entirely certain I want to find it quite that much!
We made it home safely - although the van seems to be having clutch problems, so I won't be driving very much until we can get it fixed - suddenly losing speed and having a van convinced it's in 3rd gear when the driver is certain it's in 5th is not the most reassuring method of transport.
Two tired girls sleeping sweetly and one tired mother about to follow suit
Friday, 21 March 2008
The scene: our kitchen.
One woman, doing valiant battle with a pile of washing up.
One medium sized girl, sitting in a wheelchair, trying to kick the radio off a nearby stool.
One small girl, sitting in a wheelchair, eating her spinach-based dinner.
One small doll in a buggy, wrapped in a blanket, and positioned where she can "watch" small girl eat.
Little Fish "Mummy, Baby kicky"
Mummy "Oh, your baby is kicking? Like Mog?"
LF "No, Mummy, Baby kicky"
Mummy "Oh, she's cooking?"
LF, exasperated, wheels herself over to Mummy neatly driving her footplates into Mummy's calves and tugging at a trouser leg with one green hand "Mummy, Baby kicky".
Mummy turns around to discover that Baby is indeed very STICKY, LF having generously attempted to share her spaghetti and spinach with her.
Why is it never the washable dolls who get fed? And why do they never get fed the foods which would match the hair or clothing? And, whilst we're on the topic, why is it impossible to find a completely plastic baby doll these days? All ours have squishy middles, much nicer to cuddle but much harder to keep clean.
Can I go back to London, please?
Thursday, 20 March 2008
I picked up Mog's stuff from the hospice and then collected Mog herself. The hospice likes departing children to be gone by 11AM so they can clean through the room and write notes before the next lot of children begin to arrive at 3. I'm grateful to Mog's other family; they usually collect Mog for me and she has fun with them until I'm ready to collect her. It's great - gives me another day off, another child-free lunch, and gives them more time together. Mog was being entertained today by small children cooking with chocolate. Fun!
So, extract Mog from the chocolate factory and round to collect Little Fish. I think Mog was pleased to see me; she certainly wasn't displeased, although I suspect I may have collected her before she got to taste the finished product. Oops. That or the evil glare was to do with having left her at the hospice. However, there was no doubt at all about Little Fish's joy at my arrival! Two chubby arms wrapped around my neck so tightly one little chubby cheek crushed into my chin, a great big whole upper body hug and huge massively vast grin. And no tears which was very reassuring. She was also sharing a settee with the Woof-Cat without fear; might she actually be getting over this fear of cats? Could it be time for us to start looking again?
Two girls in the bus and home James. Little Fish was in highly bossy mood for the rest of the afternoon, instructing me where to sit and what to do, and pushing Mog around the playroom in her wheelchair. Mog herself was very fitty/twitchy/jumpy/spasmy; I think she's having a hard time adjusting to this latest reduction of her Vigabatrin. It all fell apart for both of them around 5, by which time our carer was here anyway thankfully, so we threw them in a shower together and then on into bed. I suspect I may be getting up rather earlier tomorrow than I have done these past few days!
And now I must go as Mog's just woken herself up with another seizure. It could be a long night.
Three birthdays, two weddings, one baby, and Oxford Street. An unusually successful shopping trip; Friend and I had found everything we needed by lunchtime. Just the excuse we needed to have a long and rather liquid lunch here. Hummous and french bread, olives, mushroom bruschetta, an aubergine-based mystery bake for Friend and moules frites for me. Yum. Afterwards, we rolled our way along Tottenham Court Road and found a tube back to Friend's house, where we spent the rest of the day
That was yesterday, Wednesday. On Tuesday we did pretty much the same thing, without the marathon shop. And on Monday, we got here. It started, in typical "Friend and I decide to meet up" style, with complications - Friend's boss forgot to book Friend's days off. Easily sorted but meant Friend has had to go back to work this morning, Thursday, whilst I
As a general rule, when Friend and I decide to meet, this is the cue for trains to become derailed, bus drivers to go on strike, bomb threats to hit the underground, and general transport mayhem to hit the country. I have spent many a four-hour delay shivering in Preston or Lancaster railway stations, Friend has watched many trains depart without her as she wrestles with the ticket barrier. But gales and terrorist threats and general commuter insanity cannot keep us apart. Perhaps they should. Perhaps we should accept the fact that meeting up is a ridiculously complicated process, and just give up. But no more; this trip has been the exception and possibly the start of better things?
Friend made it down to meet us on Monday without a problem. We dropped the girls off and made it to the train station without major problems. We found a decent parking space, we found a decent train leaving in a pleasantly unhurried 10 minutes, there were seats on the train, and it wasn't delayed. Minor hiccups, such as realising the instructions at the carpark had said "buy train ticket, read notices on platform one and make short call to pay for parking before boarding train" and had not in fact said "forget all about parking ticket until you are on train and then realise you don't have the phone number nor the special 4 digit parking code" being resolved (Friend's phenominal memory recalled the number, and after 12 minutes of pressing various keys the automated service put us through to an operator who was able to help), we had an otherwise uneventful journey. Most unlike us.
This may be about to change. I have stayed here with Friend before, but always before Friend has accompanied me to Paddington and pointed me in the direction of the trains. I'm a big girl now; I can do this by myself. I will be leaving the flat soon, remembering to pull all the doors closed behind me, and heading for the tube station, muttering "Central line to Oxford Circus, Bakerloo to Paddington" as my mantra as I go. And wondering what's wrong with Liverpool Street - it looks like a much shorter run. But since this is the journey Friend does to and from work most days, I'll take her word for it. And I'll be leaving very shortly. Stepping out of the flat, and away from this alternative life, every step both pulling me back to Friend and to this break, a smal voice saying "But I'm so relaxed, I don't want to leave, I've had such a good time and other people have more than three night's holiday a year", whilst a louder and more urgent voice says "And soon you'll see your girls again". I know which voice I'm listening to!
Monday, 17 March 2008
After yesterday's battles, we started this morning with a ten minute struggle to get her out of her pyjama top. Note to self: hide the Winnie the Pooh pyjamas unless you have the Winnie the Pooh jogging suit ready to replace it. And possibly hide it anyway. Oddly, no battles over cleaning her eyes or her stoma - she held my hands and gently let me know when to dab and when to wait, and when her eyes felt clean. But then a major battle about cleaning her nose.
On to breakfast and she decided she wanted to be left handed. Fine; she had a bib from head to ankles and being left handed is slower for her (I have nothing against left handedness; I am a leftie myself. Little Fish is not!), so she'll take longer over her breakfast which will keep her in one place. Not a problem.
I wasn't going to argue over shoes. She's gone to school in purple slippers and they'll just have to live with it. I did win the battle over the hairbrush (although she scuppered that by immediately scruffing it all up again), and let her win the "I want to wear my coat now even though the bus isn't coming for another hour" battle.
And then, that done, she melted. Her whole body relaxed, she wanted Mummy cuddles, she wanted "me mummy's baby" cuddles, she wanted to be rocked and squidged and loved and kissed. Lovely. Then elected to go back into her chair to wait for the bus, and promptly had a final strop when the bus came as she went halfway down the ramp from the front door and refused to move any further, not helpful when I was following behind pushing Mog and the bus was waiting. I'll be glad when we get that lighter chair; lifting a 13kilo child in a 10kilo chair off a ramp and onto the grass is not fun.
All smiles and happiness once we were at the bus, "Bye Mummy, I need to get Mog to school now" and that was that! I'm assuming she's feeling a bit unsettled as we've been talking about how she's going to stay with Grannie and Grandad for a few nights - I really hope it is that and not the start of awful things. And I hope she doesn't give Grannie and Grandad too much of a taste of it either.
Mog meanwhile sat and looked superior. When Mog was a toddler and had finally stopped screaming, I used to push her and Goldy out and about side by side in their wheelchairs. Goldy used to get very excited and screeeeeeech and handflap. And Mog used to look up at me with an expression which very clearly stated "I can't believe the noise that child makes". She'd put that expression to rest for a few years, but it seems to have come out of storage for Little Fish's tantrums. I remind her that she did indeed make an awful lot of noise for quite a long time when she was younger, and that she does still kick up a stink in the middle of the night quite often. And she responds with a "but not in public, she's so embarrassing" glare. I have a five year old already well versed in teenage non-verbal speak. And a 2 year old ready to rule the world.
Be afraid. Be very afraid!
Sunday, 16 March 2008
see more crazy cat pics
And the rain it still raineth every day. Flooded on the way to church this morning. More rain due. Bob has therefore not been over - not that I'm devastated to have a Sunday without builders, but there are inside jobs still waiting too...
Signing off (unless inspiration hits tomorrow morning) for a while now, as tomorrow I'm away to London for a few days.
Please keep Jophie in your prayers; he's got a way to go yet before Trina can get him home.
Mog is laughing at her, which doesn't help matters. Except by relieving the pressure.
Palm Sunday today. The King riding on a donkey. A triumphant entry, jubilation, celebration, to be followed just a few short days later by betrayal, torture, death. Not the end of the story, we know, but how quickly the world turns. I wonder how many modern day heroes have been torn down as quickly for similarly great misunderstandings?
I have two Palm Crosses from Church. One I will hang above Goldy's montage, and the other I haven't decided yet. In my old house, one wall was given over to photographs - photographs of school friends, of children I've cared for, of friends and family and just generally a collage of my life. I packed them away when I moved here (4 years ago) and most of them are still in a box, waiting for someone to rescue them. There's the photograph of seven school friends, wet, tired, dirty but triumphant after our first ever holiday without parents or other responsible adults. The lone Piedro boot, photographed by my line manager after another day spent searching for it - the reminder of a child who spent her life removing just one of them at every available opportunity. So many happy faces - it was my sanity wall; when I was having a bad day I just had to look up to see the smiles, a visible reminder that "this too shall pass". I have photos up here too, but more spread around the house; there isn't any one wall crying out to become a gallery. I may hang it over my bed; been a while since I had a Palm Cross there.
There may be a short intermission here - I'm going away from tomorrow for a few days and not sure if I'll have internet access (or inspiration!) whilst I'm away.
Saturday, 15 March 2008
Fast forward to this morning. A lie-in - no one disturbed me until 7AM and even then it was birdsong, not childwrong. Great. Eased myself out of bed, made a cup of coffee in peace, gave Mog her morning meds in bed and watched her drop back off to sleep, sat and read and enjoyed the peace and quiet. And then a sudden panicked remembrance of Bob's message from the day before and a realisation that he could in fact be with us at 8AM. Leap up, dropping coffee and race to swap nightie for clothes designed for more public view. Doing so wakes Little Fish, and the day begins in earnest.
I wonder how long Little Fish might have slept if I hadn't woken her? Typically on a Saturday she either wakes at 6.30 as normal, or goes on snoozing til gone 9. Usually up early when we have nothing to do, and sleeping on when I had a busy day planned. But hey ho, at least I had one quiet cup of coffee and an uninterrupted night; either one would make for a good morning. Looking for more than that is just greedy!
So, breakfast for Little Fish, clothes and changes for both girls, and three of us ready for the day ahead. No Bob. We cook, we mop, we clean, no Bob. We consider going out - it wouldn't be the first time Bob has not turned up, and he has a key so no problems there. But we wait. Little Fish elects to sit in the window; she wants to wait for the school bus. Giving up on trying to explain it's Saturday I plonk her on the sill and wait for her to realise it herself. So it is Little Fish who first lets me know "MAN MAN" is here at last.
One cup of tea and much discussion later, I have a rough idea of what he needs to do. In the garden, he needs to replace the gate, finish the decking. And then he'll come inside and sort out the few remaining jobs to be done there. All well and good.
I don't know why I was surprised to look out of the window and finding him pruning the hedges instead of the agreed work... He's just walked in with a gleam in his eye which tells me he's about to say something like "that fence is damaged; I'll fix up a new one before I do the gate". I hope I'm wrong
Friday, 14 March 2008
OK so where's the mistake? Firstly, although Little Fish sat in it beautifully and was able to move it all over the place with ease, it may not be suitable for one very simple and unfortunately unsurmountable problem - it's possible the wheels have latex* in them, and since Little Fish is already beginning to react to latex that would make the chair a non-starter. We haven't just removed all the latex from the house only to bring it back on the chair! So the rep needs to find that out for us.
Secondly, it's going to take around a month from when we pay for it to arrive. OK, that's not long really (not in the world of disability equipment anyway), but, yet again we're in the position where the rep bringing the chair out is not the person equipped to make the quotation. I don't know about you, but personally if I were bringing an item out to someone who might buy it, I'd also bring the order forms and the price list, and have a way of taking payment. You'd think this would be more efficient; he could go away with a cheque in his pocket, the company could order the chair and we could have it in just four short weeks. But that is apparently far too simple. Instead what has to happen is the rep goes back to the office. The office prepare the quote, and post it to us. There's a bank holiday next Friday and apparently we may not have the quote by then. I then write a cheque, post it back to them, they process the cheque, and place the order once funds have reached their account. So the four weeks for delivery could well have another three weeks tacked onto them before they get as far as placing the order. Grump. Plus no doubt another couple of weeks after that to make the minor adjustments we need.
That's unfortunate, but not in itself a mistake. Where is the mistake then? In letting Little Fish loose in that super lightweight, super manouvreable chair. She's now back in her regular manual wheelchair and has gone on strike! She refuses to push it herself, just sitting in it with her arms crossed telling me to do it for her. I can't really blame her - the Minny weighs 4kilos, her manual chair weighs 10. She only weighs 13 herself. She's going to have to get used to it again; there's no way the other will be ready by the time we go to Florida.
Speaking of which reminds me that we were at the Dr's today to collect Mog's nappies, and I forgot to ask for those medical necessity letters. Bother.
*I just typed that as Lycra; it took me far too long to work out what was wrong with that sentence!
Thursday, 13 March 2008
I have been blaming preschool - it's certainly not a phrase we use at home, and I don't think it features in any of her stories or videos. I know it's not from nursery, so preschool was all I had left.**
Picking her back up again, I inserted her into her coat, and inserted coat and child into wheelchair. We trundled off home, and debated what we should have for lunch. I thought mince and mash sounded good
After lunch I picked her up and gave her a squidge on the way through to the bathroom. She snuggled into my squidgey cuddle and rested her head on my shoulder. Very sweet. I did a twirl with her in my arms, and said "I love you SOOOO MUCH!". "Oh MAN" she replied with the same inflection.
"I love you Sooooo Much!"
So there you have it, folks, I love you in Little Fish speak. Speech impediments are fun sometimes!
*not that I think laughing at someone, particularly a child with balance problems, falling over is necessarily right, but when it's your daughter and she's overbalancing in order to shout "OH MAN" at you, I think you're allowed to laugh. Maybe.
**For newer readers, Little Fish attends mainstream preschool two mornings each week and special school nursery two mornings a week. The jury's out as to what will be best for her in the longer term.
Wednesday, 12 March 2008
Our surgery has a telephone prescriptions service. This is actually helpful; it means I don't have to get down to the surgery to order repeats, I can just phone them in. Except the phones are only answered at set hours of the day, and it isn't possible to leave a message. Drip. The hours have recently been reduced from by an hour each day. Drip. And there are times when I phone close to the closing time, and discover they have closed early. Drip. This happened last Monday. It had also happened on the Friday before. Drip. And I needed to have phoned on the Thursday, but forgot. Drip and a mental slapping. Mog's milk supply was running low; it's a special formula, and needs to be ordered in; I try to do this with at least 10 days' supply left. So, on Monday, I found a little box on the surgery website inviting me to email my prescription requests. And at 4.30 on the Monday, I did just that. OK, request in on the Monday, reviewed by the doctor on Tuesday and sent to the chemist, should be delivered to us on the Thursday or Friday. The whole delivery thing is a plus point, an anti-drip if you will. Problem solved.
Except that on Thursday I had an email informing me that I had not used the correct format to request repeat prescriptions. Medications should apparently be listed in ALL CAPITALS with doses following, and only the medications on one particular part of the patient files may be ordered in this manner. Thursday. One week after I needed to have ordered them, four whole days after I thought they were arriving. Drip drip drip drip dripdripdripdrip gush. I phoned the surgery, I emailed the surgery, they, thankfully, managed to sort it out, order some of the milk on an emergency basis for delivery on Friday, and order the other medications to be delivered at the start of this week. Breathe again.
Breathe again, that is, until I realise that my carer has tidied the last bag of nappies into Mog's nappy box. It's our super-efficient carer, so she has thrown out the bag, rather than leaving it
That was however the only tricky bit of the operation. I used to be able to phone up and leave a message one day (even at midnight, this line does have an answerphone), and the pads would be put into the foyer for me to pick up at some point the following day. But a few months ago, that changed. Drip. Someone's supply of incontinence pads was stolen from the foyer. Drip (quite literally, for that particular individual!). So now a new rule is in place, pads will be put into a particular room in the surgery, and we can collect them from there. However, this room is the room used for all the baby clinics. So it is now only possible to collect pads on three days a week, and only at certain times of day. Drip. Mog's nearly out of her nappies. Drip. School is out of her nappies (which is why they helpfully removed the supply we'd put in her bag yesterday). Drip. Squelch. Drip. I phoned today, and I can't collect them until Friday. Mog does at present just barely squeeze into size six Pampers, although they aren't the best option and don't keep her as dry as the Tena pads she usually uses. So running out is inconvenient, but not totally disastrous. At least, not until she grows some more. Drip.
Friday. Not just Friday, but Friday between 9 and 11 AM. I'll have to be able to manage it; we certainly don't have enough pads left to last the weekend, and if she's in the Pampers I'll need to change her every couple of hours. Oh, and I really don't want to be collecting bags of pads on Monday morning before we all go our separate ways. Drip. Evil thought; I could use up our remaining pads this weekend, then send her to Helen House with the Pampers. She has 1:1 there, what's the problem? But I won't; I shall resist the urge. However, Friday at 9 is also when the wheelchair rep is coming with the Otto Bock Minny to try, and when the physio is coming to give her opinion, and when (allegedly) Bob may be returning bearing bills and a new back gate. Bring on the clones. Meanwhile, another drip.
Two relatively simple (on paper) needs. Medications and incontinence supplies. Both needlessly complicated by policy and the decisions of others. As well as my own lack of organisation; I'm well aware of the fact the perfect parent would have some marvellous system of reordering things, and be able to stick to it; I have nothing but admiration (and a little envy and sense of awe and wonder) about parents who do manage that, but it isn't my life. Drip. If we lived ten miles from here, our pads would be delivered to our doorstep. For free. And then I'd probably be complaining about missed deliveries - there's always some kind of stress.
But two small minor things to factor into our week, both adding to the little drip drip drips. Mog's breathing is another bigger drip factor - it isn't normal to be breathing like that, not all the time, day and night. She used to breathe like that for days on end, but it improved. Now it's worse again. Drip. Whilst I'm excited about getting a few nights to sleep, I'm worried about leaving the girls too - drip drip DRIP. Another little driplet; the central heating repair needs to be fitted into the diary at some point. Mog is starting Rainbows (YAY! And only nine months late), but the timing of the meeting means I now need to reorganise her evening care package. Drip. Mog's feed now runs so slowly I am often up late waiting for it to finish. Drip. And Little Fish has started waking earlier with the lighter mornings. Drip.
That's the drips, the little frictions, the tiny constant irritations which gently rub arthritis into my soul. Three days off will be my balm, if getting there doesn't finish me off.
Then there are the other little things. The nice little things. A kind note from a friend, a supportive message from a stranger in the street (temporary fame is a strange thing), a big bag of outgrown clothes just right for Little Fish, and in excellent condition. Some of them can't have been worn more than once. Beautiful little pinafore dresses, tshirts, cardigans, everything a girl could wish for. My laundry pile has grown as instead of recycling it I am adding new things every day (ok that might be a drip, but a worth it drip). Good news about friends' children, a keyworker at preschool touched by the burgeoning friendship between Little Fish and Little Preschoolers, the friendship itself and the welcome afforded to Little Fish from children and other parents alike.
The Little Things happening all over at this time of year; the daffodils and pansies and crocus and tulips coming into flower in the garden, and the nesting birds (do not ask me what kind; they've got two feet and wings and they make noises. They shed feathers. They're birds), and a visit from our old cat Henry.
It's been a very weird week. Stressy things happening make our normal stresses more stressful. But mixed in with that are little nice things too; I hope I can concentrate on them for a while.
Pray for Jophie. He's out of surgery, but not out of the woods.
Do I parent the children entrusted to me, or do I care for them?
Short answer: it depends.
Longer answer: it depends on all sorts of things. A child coming here for respite is not usually in need of an extra parent. If a child arrives for the weekend, then they will usually (but not always) arrive with a long list of instructions from the parents, they will need plenty of reassurance that Mummy is coming back very soon, they may want lots of cuddles and affection, but they aren't looking for an other parent. If the child becomes ill, then chances are the respite will be cancelled. If there's an emergency then after I've dialed 999 I'll be calling the parents, and they will be the ones talking to the hospital staff.
An older child coming for a longer stretch of time may not want or need another parent. If a child has lived with parents for years and then comes to live with a fosterfamily, that child probably isn't looking for replacement parents. They're looking for a safe shelter, for space to grow into their adult selves, they may well need parenting (and I don't assume birth parents are the only people to have parental influence over a child - I'd extend that to anyone who exerts a positive influence over a child. The whole "it takes a village to raise a child" thing), but they aren't looking for a replacement Mum or Dad. I have been a Tia far more often and for longer than I have been a Mummy.
I call my girls "my girls" not in an exclusive "mine and no one else's" sense but as shorthand for "the children who live with me and whom I care for". Sometimes, I don't mention the child's status as a foster child to protect the child's privacy. People seem to think that they have a right to know every detail of why a child might not live with their birth family. Failing to mention that I am not the birth parent, to people who don't know, is not to disrespect the birth family but to respect their privacy. Strangers have all sorts of misconceptions about why children may be staying with me.
I also use "my daughter" quite pointedly at times, to reflect the importance of the relationship we do have. Again, not to undercut the relationship with the birth family, but to emphasise to others how important the child is to me. There can be an assumption at as a foster carer I have some kind of caretaker role, without the emotional investment. It has taken me years to persuade my grandmother to stop calling my girls "your patients", years of constantly referring to "my daughters". Others failing to understand the role of the fostercarer will refer to "your clients" or "your charges". So "my daughters" is an attempt to get people thinking about that.
The children living with me do become my children. Fostering regulations require me to care for each and every fosterchild as a member of my own family, whether they're here for an hour or for a lifetime. That's the law. It doesn't mean I am trying to take anything away from the birth family.And it doesn't mean I become "Mummy" to them all - in fact Little Fish is the only child who has ever called me Mummy. And she's not the only child I have had with the ability to talk.
I used to work in residential care. As a key worker, I held special responsibility for three children at a time, as did everyone else working there. We used to refer to "my children" "your children" - it didn't mean we were attempting to replace the parents, and it wasn't intending to imply an exclusive relationship. It meant "those children for whom I am, at this point in time, responsible". The keyworkers at the girls' hospice, and at our local respite centre, use the same terminology. And they certainly aren't in any way attempting to parent the children or replace the parents.
Some children do need replacement parents. I've adopted Little Fish. As much as it is ever possible to own a child (and I'm not convinced it is), she is mine. Legally a Beale, now and forever. I am not going to discuss her birth family's situation - they (and she) have a right to privacy. But she was in need of a permanent, legal, family, and she has that in me and in my wider family.
Mog's situation is different. Whatever people want to believe, she has two loving birth parents. She doesn't need them excising from her life. She isn't able to live with them, but that doesn't mean she should lose them altogether. Which is why we have chosen Special Guardianship. This is a legal order that lasts until Mog is an adult, or until she leaves fulltime education. It give us all shared Parental Responsibility. Mog has extra needs, she has extra parents to meet those needs. The local authority has never had parental responsibility for Mog, and this way, she can become a full legal member of our own wider family, as well as her original birth family.
Mog has a home with me for life. I don't know how long that life will be, but she's unlikely to outlive me, or even outlive my capacity to care for her. She attends Helen House Hospice - hospice care is intended for children who are not expected to outlive childhood. Some do, in fact so many of the children for whom Helen House was built have survived to the age of 18 that we now have the world's first "Respice" for young adults (under 35) right next door to Helen House - Douglas House. Will Mog be one of the lucky ones? Who knows - she has a weak chest, a poor swallow, and hundreds of little seizures every day. And that's on a good day. Whilst other fostered children have moved on, that's not the plan for Mog.
We have back up plans in place in case of emergency - whether that is an emergency requiring my attention elsewhere, or whether that is an emergency involving me. In the event of my death, there are plans for both girls. I choose not to discuss those here, and they are in any event, only relevant to those directly involved in our lives. The plans have been made though.
I am not unique in the world of fostercare. I am in contact with a large number of fostercarers, and many many of these have fosterchildren who are living with them on a permanent basis, but for whom adoption is not the answer. For some, permanency means until 18, but for many more it means forever. Certainly within the field of learning disability, adult family placement schemes are on the increase. This is effectively fostercare for the over 18s. It isn't right for everyone, nothing ever will be, but it is an option. Many fostercarers have kept on their adult fosterchildren, either negotiating a continuation of their fostering allowances, or making sacrifices to keep the foster family together with a drop in income. Other fostercarers cannot make that commitment, or would, but the young person needs something different, and then alternative living arrangements are looked at. I'm aware of more than one fostered child who returned to the birth family on a fulltime basis after the age of 16, sometimes because other children in the family were older and more independent, so the parents now had the capacity to care for the child who had been fostered, sometimes because the needs of the child changed as they grew older, sometimes for other reasons.
Perhaps what we have for Mog is unusual. She certainly isn't the only child in fostercare to have significant relationships with her birth family though. It is not unusual for the wider birth family to remain actively involved in the child's life. I have had more than one child where birth family have provided me with regular respite, and I'm not the only fostercarer to have experienced that. Special Guardianship is relatively new, but people appear to be liking it. Residency Orders have been around for a good long time, and have been used to give fostercarers shared PR with the birth parents.
I love fostering, I really do. Hearing about the possibility of a child, waiting to hear more, meeting that child and getting to know them; it's great. But in an ideal world, every child would be born to parents who love them and are able to care for them, meet all their needs, nurture them and help them to grow into the capable adults they will become. The day that ideal world comes, I and all the other fostercarers will gladly hang up our hats and never foster no more. Until then, we'll get on with it, and hopefully, we'll enjoy it more than we are frustrated by the process. When the child needs a new family, we'll provide it. When the child doesn't need a new family, but does need a place to stay, we'll provide that. In that, I am not unusual. Fostering is a service for the child, not for the fosterers.
Tuesday, 11 March 2008
So with a slightly differently shaped morning, I collected the girls from school and dropped Little Fish off with my mother. Little Fish likes going to Grannie's work; lots of people think she's "very special" and spoil her rotten. Last time she was there they gave her permanent markers to play with - her Tilly Doll has never been the same since. Ah well, Little Fish has scars, why shouldn't her dolls?
Little Fish dropped off, Mog and I pootled along to the train station. To make the always pleasing discovery that our planned train had been cancelled. Marvellous. We had the pleasure of watching the proposed replacement disappear as we hit the platform, so settled for a cheese sandwich and the third option.
Full marks (and not of the nit lotion variety!) to Oxford railway station. We hadn't booked assistance, but they found the ramps instantly, told us where to stand, sorted out assistance at the next station along, and generally made our journey as easy as it could be, considering the several delays and cancellations.
Connect at Reading then off at Paddington and into a special car. In theory. We did have several conversations about the necessity for a wheelchair accessible vehicle. "Oh, you mean a people carrier?" No, a wheelchair accessible vehicle. One in which Mog can travel in her wheelchair. "So, a car with space for her chair to fold up?" No, a wheelchair accessible vehicle. Look, just tell the transport company you need a wheelchair accessible vehicle. They'll know what you mean (I hope). They did. Well sort of. I did mention that Mog's chair was too big to fit into a Hackney Cab and be strapped down. We ended up holding her chair steady for the half hour to our final destination.
Our destination? Television studios! Two mothers, one Mog, and a Richard and Judy. And dozens and dozens of assistants. We made the always pleasing discovery that I had forgotten to pack Mog's spare nappies; instantly a minion was despatched to buy some. We had minions! We had makeup, we had endless cups of tea. We had people filming Mog at play, and people wanting to hear about Mog's life. Mog had a present waiting for her in the dressing room - a beautiful turquoise teddy bear which lights up when cuddled. She was very pleased. Especially since it matched the butterflies on her cardigan. She was in her element - so much attention. Plenty twitchy, plenty noisy breathing, but generally one busy little girl. She didn't get makeup - the makeup team promised to make us all look ten years younger - as Mog is only 5 we felt it probably best they avoided that.
I think she panicked the production team - they called a paramedic to be on standby!
After an afternoon of general fabulousness (at least as far as Mog was concerned), it was showtime. The production team wanted Mog to sit between us on the settee, but as she can't sit unsupported, we decided that cuddles was the way to go. This pleased Mog! Lots and lots of noisy breathing - I think she was playing "see who can make the most noise over Mummy's Mic". She won.
A friendly interview I thought. I haven't seen it yet, we were told it would be about five minutes, but it felt much shorter than that. I hope we came across as ourselves - I'm sure Mog did. I'm hoping one of her doctors might see it actually - we've been concerned about her breathing for a long time, and yet whenever we get seen, she stops. Hopefully having this on video might be something they can see for themselves - she's been doing it pretty much nonstop for days now (until you come near her with a SATs monitor or a someone of a medical persuasion). It might just demonstrate what we're talking about. I'm not sure what they could do about it though; we're told it is due to her having a tight windpipe. Not sure you can stretch them out - and I'm not sure I'd want them to if you can!
Back to the dressing room and then to the green room for wine (us) and canapes (theoretically all of us, although since Mog choked on a taste of sour cream dip she didn't get given the hummus or taramasalata. All the more for the rest of us! Nice honey dipped sausages - I must work out a recipe for them.
All good things come to an end. The cars were waiting, so we loaded ourselves back into it, together with Mog's new teddy and some thank you cards, and headed back to the station. Where we (naturally) missed the train. Next train in half an hour, so we sat and slurped some soup. I suppose it was inevitable that I would somehow flip my bowl up and over the tablem narrowly missing Mog's head and the man at the next stool's trousers. Stool Man and a stoic waitress mopped up the mes, and then we had the true highlight of the day.
One woman was circling us, hovering behind us and obviously wanting to talk. So we smiled at her, and she came over and mentioned she recognised us from the Guardian article. She wanted to thank us for writing it, it had been so helpful to a friend of hers. She didn't think she'd make the same decision as Julia, but it had been really useful to know that others had been in that same position, and had done just as Julia did. I think we both felt that this put all the negative publicity in focus. If, by going public about Julia's decision, and about our lives now as an extended parenting team, we help just one parent in their own situation, then it has been worth it.
I very much hope that woman does enjoy and appreciate and love her new child for who he or she is. Neither Julia nor I are suggesting that Julia's decision is one which all parents would or should or could take. But I also know that for me, knowing there are alternatives actually helps me to stay strong in my chosen course of action. It becomes an active decision rather than a default setting, and that gives me strength to carry on.
I am phrasing things badly. I suspect that no matter what I say, people are going to interpret my words according to their own thoughts and beliefs. I just think it is important for Julia's story to be heard. I'm a fairly private person (which I suppose is a silly thing to say considering I'm writing a fairly public blog!), but I have given up a part of my privacy in order to share my side of the story. We've helped one woman. Maybe not in a big, life changing way, but if we gave a measure of reassurance to someone at a difficult time, then that is good, right? I can't honestly imagine anyone reading Julia's book and deciding to hand their child over to social services as a result of it. I can imagine (and have heard from) people who have read the book and found it helpful in their own circumstances, who have been grateful for someone willing to talk openly about this subject.
But I digress. We made a (small) difference. I think that's a good thing. We then thanked the woman (who thanked us), and headed for the next train. The travel staff told us we were too late and we wouldn't make it, we told them we would, and we ran. Up the platform and onto the train, where we somehow squeedged ourselves into the gap between two carriages, the three of us and half a dozen business men and women with laptops and mobiles and smart shiny coats. Catching our collective breath (and it was a squeeze; I think we all shared that breath) we waited for the whistle and the chug chug chug out of the station. And waited. And waited. And watched 7 policemen run to the top of the train and remove a passenger. And waited. And finally WHEEEE Chug chug chugchugchuchuchuchuchugCLANKsqueeeEEEEEE! and we were off. One man arrested for assaulting a member of the railway staff, one unapologetic apology from the guard, and finally home James.
One very happy very tired Mog. Two very tired mothers, hoping we came across ok. And so to bed.
Monday, 10 March 2008
I am entertained by the Telegraph's article. Something tells me the journalist may have been reading this blog - hello, Cassandra! According to the article, I call Imogen Mog. In fact, here is the only place I call Mog Mog. Perhaps naively, I thought that keeping the girls' names out of the blog, and using my nickname rather than my full name, would give us a modicum of privacy. I think that went out of the window with the first bit of publicity. I'm not complaining, just trying to adjust.
But I do like the idea that I call Mog Mog out in the wider world. If someone got that from reading this blog, I feel I owe it to you to confess that Little Fish's name is not actually Little Fish. The thought I might use these internet nicknames in speech has been amusing me. Can you picture it? "Little Fish, Little Fish, put down that spoon". "Let me cuddle that Little Fish". "I need to put the Fish to bed now". School registration - Angela? Here miss, Danielle? Here miss, Emily? Here miss, Little Fish? Little Fish? blublublublublub.
Some busyness and some silliness, and now to put it all into perspective some seriousness - pray for Jophie. If he's not in theatre at this very moment, he will be shortly. Trina has posted an update with more information. We're facing a minor upset to our normally quiet lives. Jophie's treading the tightrope between life and death.
Message in the home/school book last week"I would like to meet on X date at Y time if that's ok". Suggested date clashes with an alternative arrangement, so I need to call the therapist to change it. Problem - no phone number to hand. I could have sent a message into school last week with the other child but, I am not that organised.
Think for a minute (hard work in the mornings!), and decide to phone school. School have a list of numbers, and read off the number for our physio. I phone the number, and get the answer phone for the physio-who-is-not-our-physio. Hang up, call the school again. School check the number, give me that same number again. Impasse.
We (the mysterious man at the other end of the phone, possibly the headmaster, and I) agree to try the published number for the physio-who-is-not-our-physio, to see if they have been swapped. I ring, I get the answerphone for the physiotherapy assistant.
Deciding at this point not to phone school again (although it is tempting, I wonder who the next number on the loop would belong to?), I call the original physio-who-is-not-our-physio requesting the number of our physio. And then call the assistant, and ask her too. One of them will surely know.
Put the phone down, pick up the computer. Phone rings. Computer down, pick up the phone, it's our physiotherapist who has been passed a message via the assistant. We cancel the proposed appointment, but will have to phone again to rearrange as there is a diary issue.
Put the phone down, pick up the computer. Phone rings. It's the physio-who-is-not-our-physio, calling with our physio's number. And another message, about a new wheelchair assessment.
After all this, you'd think I'd take that number and put it into my mobile phone. So, have I done this, or put down the phone, and picked up the computer again?
Sunday, 9 March 2008
Sadly it's also a description of me today. I switched Mog's feed off instead of to hold whilst setting up the new set of milk. Being switched off, naturally it didn't beep to remind me to turn it to run when I'd finished. So she sat milkless for three hours this afternoon. And now I'm sitting up for another three hours until it has all dripped through.
On a more positive note, this sign reminds me that in four weeks' time we'll be heading back to Florida for some more peaceful manatee spotting (this sign comes from the manatee rescue place we visited in 2006). Lots to do and see but hopefully some time to slow down and relax too.
And, in just one week's time, I shall be leaving the girls behind (although not, obviously, home alone) and going to London. Not to paint the town red, nor even the faintest shade of pink. Just to sit back and enjoy a couple of days at idle speed with Friend. And hopefully a couple of nights with No Wake. Bliss.
Pray for Trina and Jophie. Jophie's having surgery tomorrow, and I know Trina will appreciate all the prayers you can offer on their behalf.
Saturday, 8 March 2008
I'm eating my words.
We tend to walk to Budgen's several times a week to pick up
Over the weeks, Little Fish has grown to know the layout of the shop extremely well. Too well. At first, she would follow me, trundling along at her standard three paces behind, just right to ram my ankles should I even think about stopping to fill my basket. She doesn't bother any more. Instead she has worked out that if I go up the first aisle, I will come back down the second aisle. So instead of following me, she's free to browse the aisle ends. Those tempting aisle ends, full of chocolate doughnuts (aisle 1), chocolate generally (aisle 2), chilled snacks (
So here's me, with or without Mog, haring up and down the aisles, throwing things into a nice green plastic basket. There's Little Fish, browsing the end sections. Thankfully the doughnuts are in a little wire basket thing, and she hasn't (yet) figured out how to open that. There's still far too much potential for trouble. Did I mention it's a small shop? So as she is sitting drooling over foody treats, she's blocking access to the post office and to the cashiers, effectively bringing trading to a halt. I try to bring her with me, she screams. She sits staring at the chocolate section, shouting for chocolate. Mog finds this funny.
For a while there, I could stop her blocking the aisles and keep her with me by choosing a packet of chocolate buttons and putting it firmly in the basket. She'd then chase me round the shop shouting for them. But she's got wise to that now, and just sits there solidly, shouting even louder. Especially if I've had the audacity to decide which chocolates we should buy.
I'm still not going to be opening the packet and bribing her around the shop with them, presenting the cashier with an opened packet to be scanned at the end. But I do understand why other parents might do just that. Thankfully, the buttons are on the bottom aisle, and she can't reach them. This doesn't stop "helpful" fellow shoppers from passing packets to her. And now she has learnt to open them herself.
I'm probably the meanest Mummy in the world. I take the packet away and insist we pay before she eats. So then I have a child shouting not for chocolate but PAY MUMMY PAY, which sounds as though she's highly embarrassed by the fact her mother is a shoplifter. Joy.
Her torture ends eventually, we do finally pay, we load things into her bag, and if I'm lucky, I can get away with giving her just one button from the packet to see her on her way home. If not, then she's already been given the packet by the smiling cashier (why would she do this? She's heard me say no!), at which point I can cue the screams again, or I can bow to the inevitable. At least until we get out of the shop, at which point the scream might be as piercing, but the echo at least has gone.
So what would you do? She doesn't need chocolate every time we shop. She doesn't get chocolate every time we shop, and even if she does get it, she doesn't get to eat it every time. She does however scream each and every time she sees the packets and will continue to shriek until it's consumed or until we've left the shop and found something else to worry about.
I suppose that was to be expected. After all, in Julia and myself, you would appear to have two women who have made completely opposing choices. As a fostercarer, I take in children who need an alternative home, whether that is for a few days, a few years, or forever. And Julia would appear to have walk away from her own child, *insert appropriate gasps of horror here*.
I'd disagree. I'd say that we are both women who have put their children's needs above their own. India Knight quotes me as saying "We all have different skills. I couldn't work in an office. If parents can't cope with a child, the most loving thing they can do is make sure the child is cared for by someone who can." And asks, "Is it?"
You asked, India, I'll respond. Of course it is. What is the alternative? If you aren't coping, and you can't cope, if you believe you cannot keep your own child safe, and if you are not getting help and support, what do you do? Carry on regardless? There are far too many parents who have carried on, beyond the point of coping, and who have found themselves badly injuring (or worse) their children. Parents who have found that love turn to hate or to utter withdrawal, children damaged by a one off fit of rage or by sustained years of emotional abuse, neglect, cruelty. I don't know that this would have been Mog's fate - none of us know that. But it was a possibility. Is it better to leave your child somewhere safe or to take them into danger?
We all get stressed, angry, frustrated (or am I a freak?). We all have ways of coping, ways of stepping away from the stress. I'm lucky - most of the time it is enough for me to put the screaming baby down somewhere safe, and walk to the other end of the house with a cup of coffee for five minutes. Just time to draw breath and step back into the fray. But what if that fray is unending? I'm also lucky in other ways- I have a supportive family, I have social services carers, and as a fostercarer my local authority provides me with financial support too. And with Mog, in those early months when she was screaming all the time (and I know, "all babies scream" - not like this they don't. Even sleeping, Mog was full of tension, full of anguish), I had Julia. I had a night off from Mog every single week, a night when I could focus on my other child (who, thankfully, found Mog's screaming wickedly funny, so spent those months giggling happily which also took away a good deal of my own stress), a night when I could just sleep.
I wonder how many other families would be able to cope better if they had that level of support? Some do, formally through social services, or informally, through family and friends. Many don't. Some don't want it (at least according to parents I talk to out in the "real" world, or over at Special Kids in the UK), but would give anything for other kinds of practical help. Clearly, the majority of parents do somehow manage to hang onto their children and muddle on through. Some outstandingly well, in a way that leaves us all gasping, and others just taking each day, each hour, as it comes and dealing with that. Sufficient unto the day and all that.
But you know what? For every child in fostercare, for every adopted child, there's a first family, a birth family, who got left behind somewhere along the way. Some of those children will have been removed from their birth families for their own protection. But others, hundreds of others, have been voluntarily accommodated, signed into care by their birth parents. Are all those parents monsters? Are the parents who signed their children over voluntarily somehow greater monsters than the parents who had their children removed against their consent? Are parents who have children in longterm fostercare, or who have given up their child for adoption, more monstrous than parents who have taken the decision that their child needs any other kind of residential placement? Boarding school with respite in the holidays? 52 week boarding school? Residential homes? If there is a difference, what is it?
I'm in contact with other fostercarers, other adopters. So many parents walk away, once the decision has been made that the child would be better cared for away from the birth family. Contact tapers off, dwindles to the odd letter or phone call, or to nothing at all. Or contact continues, with birth parents and fostercarers in conflict over child-rearing. Apparently small decisions - style of haircut for example - can become major problems. Fostercarers who have the day by day responsibility of raising the child may say no to a particular toy or article of clothing, only to find the birth parents buying this for the child on a monthly contact visit. From the birth parents' perspective, they are giving the child something he or she wants, they are bringing pleasure to their child during the time they are able to be with that child. From the fostercarer's perspective, they are being undermined and ignored, and they then have to deal with the fall out from that visit - one child now newly reprovided with a toy the fostercarers had banned due to an unhealthy obsession with it, or with an item of clothing forbidden at school, so mornings will now be a battle. Or simply a child who learns that if one family says no, the other family will say yes. I'm sure many divorced couples with children can sympathise. With both sides of the argument.
But Julia didn't walk away. Mog has not been abandoned by her birth family. As is clear in the book and the various articles, Mog's family stay in touch. She is a part of her birth family. She has gained a new family in my family, without losing her original family. More parents, not fewer, more help, not less. I am sure it would at times have been easier to make a clean break. To walk away, to grieve the loss of the child, and to get on with life. It must be hard at times to stay in touch, to watch Mog grow and thrive, and also to watch Mog suffer - because she does suffer. Not always; she's a very different child from that small stiff bundle of misery, but her disabilities are profound, her problems are severe, and she is frequently ill or in pain or having seizures. As she makes progress cognitively (against all the Drs predictions and against what ought to be possible, according to her scans), so she loses ground physically. Is it any easier to watch this at a distance? I wouldn't have thought so.
I have read comments criticising us for deciding against adoption. Adoption would not be right for Mog. She doesn't need to lose family, she doesn't need to be protected from her birth parents. Instead we are choosing Special Guardianship, a legal process whereby I become her parent alongside her other two parents. She will have three parents, three people able to take the complex decisions involved in her life, three people to rely on in difficult times.
India, isn't that the loving thing to do?
Friday, 7 March 2008
"Annie Boy" is much loved, and the feeling is mutual. It must be - there aren't many boys who would put up with being called Annie!
Both Annie and his sister live nearby and call in sometimes on their way back from school (with their mother). Little Fish loves it. My friend and I thought that Annie's sister and Little Fish might like to make friends, especially as they are the same age and attend the same preschool. But what do we mere parents know? Annie and Little Fish seem to be made for each other. Three years older, he thinks Little Fish is just wonderful. They're in our ball pool here, and Annie Boy worked out how to help Little Fish jump in and out - here he is pulling her out of the balls and back up onto the edge. As they jump in together, Annie twists his body around so he cushions Little Fish's fall - such a gentleman!
If Little Fish wants to play babies, he'll play babies too - admittedly his idea of playing with the babies is to attack them with a crocodile, whereas Little Fish prefers to change nappies and tell them off, but they play together so nicely. Annie's sister meanwhile gets to take apart the rest of our playroom, eat the soap in the bathroom, and generally potter around doing all the things little girls should do. Mog sits in her chair and watches it all from a safe distance, sometimes choosing to join them in the ballpool, but more often cheering them on from behind.
Funny how things work out. We had another friend friend drop in earlier on in the day, and as we knew she was coming, Little Fish and I popped out for supplies in the morning. Friend number one was satisfied with coffee, and for once I didn't scarf the biscuits myself once she'd left. So when Friend two arrived with Annie and sister, I was able to be the perfect hostess by accident. I like that kind of accident. The children seemed to approve too.
Annie and co. left at 5.30, giving Little Fish just time to eat before our carer arrived to help with Mog. Perfect timing.
Jophie still needs your prayers,
We won too! And what a prize it was. Lauren from e2 designs held a contest looking for new ideas. I suggested that she make larger size booties, for older disabled children. Look at these little non-walking feet - aren't they just crying out for some nice soft cosy slippers? Lauren took up my suggestion, and ended up making us not just one pair for Little Fish, but three beautiful pairs of beautifully snuggly booties.
Little Fish has been wearing the purple ones to school; they are soft enough that she can commando crawl around the floor wearing them, yet they are thick enough to protect her toes from carpet burns as she does so. Mog has claimed the yellow pair, and has been wearing them in bed, after her bath, on lazy Saturday mornings, and any time when she is just kicking back and relaxing. I love them - they're soft enough not to hurt when she kicks me, and warm enough to keep her feet nice and pink. Always handy.
And those little brown ones? That's the best bit of all! They've found a very special home with a little boy we know. This little boy has a progressive disease, and at age three, he has already outlived his life expectancy by a couple of years. He's a beautiful little boy with a lot of problems and a wonderful, enchanting smile. His soft feet have never been pushed into unforgiving shoes, but as he has grown bigger, finding baby shoes to fit has been an ever increasing challenge for his parents. They've been reduced to buying soft sheepskin girlie slipper boots and hiding or unpicking or hiding the floral accessories. The trim on these booties has airplanes and cars on it - they are so right for a little boy!
So thanks Lauren, and thanks to Shannon for organising another bloggy giveaway. Take a look at Lauren's Etsy shop - she does more than just booties.