Summer of Love

I think it would not be unreasonable to say that the past twelve months or so have been pretty rough, for myself and for so many of my friends. Deaths, plural. Major illnesses. Surgery, planned and unplanned. New and totally unexpected complications. And the more usual stresses and strains of parenting; exams, driving tests, music lessons, spelling lists. Big and small, because when you're already under a lot of pressure, the small challenges are at least as overwhelming as the bigger ones. It's been hard.

It's exhausting.

And now Mog is ill. She's been ill for a while, actually. Shortly before the summer holidays began, she started needing her CPAP during the day, started struggling to take proper breaths, finding sitting up for longish periods of time increasingly tricky, oh, and her back is marching into a fine twist. New medications, new treatments, new ways of coping. It hasn't stopped us from doing very much. We've still had a couple of weeks under canvas, still been visiting friends and family, but life over the past two months has been running at a faster rate than normal. And in the past week or so, a good day has been a day when she's had a whole three hours when she's not needed support to keep breathing. That's not great. She's happy, she's enjoying life. But she is tired. Maybe it's fixable, maybe it isn't. I don't know. We have various appointments coming up; perhaps we'll find a solution. 

It's taken me by surprise, just how poorly she is. Snuck up on me. I've been busy, arranging life around her new needs, juggling her issues with just getting on with everything else. And it wasn't until we were nearly ready for the new term that I realised, actually, Mog is nowhere near ready for the new school term, and cannot possibly manage a full day in school in the same way she did back in July. So, whilst we're looking for answers, I'm taking her to school myself for a few hours at a time. Something which I've never wanted to do. But something which is now totally right. Not forever; I hope we'll find a more sustainable solution (because if Mog can only manage 3 hours without support in her breathing, I need to spend part of those three hours doing little things like shopping and keeping the house ticking over, and sitting beside her in a classroom doesn't really help with that). But for now, it's the right thing to be doing, and it is good to get an insight into how her school day runs.

It's hard.

Mog's teacher was Goldie's teacher, and on our first day in class, she showed me a beautiful slideshow of photos I'd never seen before, photos of Goldie in school. Beautiful photos, a precious gift (which will be all the more precious once emailed to me so I can use them myself), and a truly lovely thought. But a bit of an emotional hammer as I sat hooking Mog up to the oxygen she's never needed in school before.

For our next project, we combined the colour purple and butterflies to make a lovely name frame for Mog's photo. Again, beautiful. But local friends will understand why purple butterflies might be another hammer.

Another day, a new nurse in class (supporting another child). A nurse who knew us through yet another of our too-soon-gone friends. Another hammer.

All good, all lovely, but every one another reminder of the immense fragility of this life.

But God. Our God is able. Every year we go to New Wine, every year I come to know God in a different way. This year, we thought ahead. We booked our carers in a different way, dividing them up amongst our children to ensure all four (we camp with a friend and her two children) were covered, enabling us as adults to spend time at the feet of God without having also to spend time with children at our feet. Beautiful. Worship. Prayer. Teaching. Coffee. Lovely.

And then two days in, Mog got tired, and couldn't manage the children's sessions, and came to join us instead. And tLP decided she couldn't face the evening sessions - child or adult - and I spent my mornings with God and with Mog together, and my evenings hunched over a radio listening to the services whilst sorting meds and nebs and ventilators and smiling at a bouncy toddler jumping on our lilos.

And I was tired, and I was a little bit grumpy, and quite a lot cross, and resentful of the fact that just about everyone else on site seemed to be having a better time of it, a more fulfilling time, a more intimate connection to God, and here was I, sitting in a tent washing syringes.

And then I stopped grumbling, and just sat and listened, and finally God could speak. And He said that I was right where He wanted me to be. That this life, parenting these children, befriending these friends, walking alongside these people, sharing lives with these families, this, back in the past and right here and now, this was exactly where I was supposed to be doing and there was absolutely nothing more important than this.

We are built to worship God. But what that worship looks like is going to be different for each of us, and different at different times of life. I am a parent, daughter, sister, friend, neighbour. I was created to be this parent, this friend, this neighbour. Jumping up and down on stage with Martin Smith, as our friends got to do, is a fairly obviously awesome way to worship God (even if your trousers do fall down). Picking crusty bits off a manky gastrostomy is perhaps a less popular form of worship. But it's no less valid.

This has been a hard summer. But it's also been a summer where love has been poured out over us. Here we are, "Team Purple" at New Wine. "Extravagant Love" say our adult adult (as opposed to younger generation enthusiastic blonde carer adult) sweatshirts. "I'm God's Brilliant Idea" say Mog and her Knight's. And God has shown this so much. From the stranger standing behind us who stopped to pray. And came back to pray again. And again. Because God had more to say, and more loving affirmations to give. To the speaker who knew exactly what I was thinking. And stopped to tell me I was wrong. And loved. To the strangers who stopped another stranger to run after us (in order to ensure anonymity), and who passed on a large amount of cash to bless us for the work we do. To the artist whose paintings in the gallery were just perfect; completely right for our walls at home. 

Love poured out by strangers and friends who worked so hard on Mog's quilt, and who are working now on tLP's. Love poured out professionally, in the form of extra respite just when it was needed most. In battles being taken on by other people, before I've even asked. In solutions being found before the problem has been fully identified.

We are here because right here is where we need to be. I don't understand it all, I can't possibly. But God does. From our week in the sun last October, to a precious weekend in April, to two special weeks this summer, from the perfect bar of chocolate to finding that missing odd sock, and from waking to sleeping and even when I sleep, this is the year of the Lord's favour. His life, for me.
No matter what.

The Year of the Lord’s Favour

Isaiah 61
1 The Spirit of the Sovereign Lord is on me,
    because the Lord has anointed me
    to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
    to proclaim freedom for the captives
    and release from darkness for the prisoners,
² to proclaim the year of the Lord’s favor
    and the day of vengeance of our God,
to comfort all who mourn,
³     and provide for those who grieve in Zion—
to bestow on them a crown of beauty
    instead of ashes,
the oil of joy
    instead of mourning,
and a garment of praise
    instead of a spirit of despair.
They will be called oaks of righteousness,
    a planting of the Lord
    for the display of his splendor.





Tia

Love Quilts

Way back around the start of the year, we were lucky enough to grab an open spot and sign Mog up for a Love Quilt. Www.lovequiltsuk.com is an amazing place. 

Over the past eight months, we've watched and been excited to see Mog's quilt open for stitchers, and then to watch the stitched squares come in. 

Slowly, the quilt has become more visible as different people have sent in their finished masterpieces. And then the squares were sent to a wonderful quilter, to be transformed from a pile of aida into the most beautiful creation I've ever seen. 

The quilt was delivered to us this morning, just in time to take it with us for a stay at Helen House. 

It's beautiful. It's a Love Quilt. Stitched with love by friends and strangers, locally and from around the world. 

I don't know who the homeschool cross stitchers group are, nor where in the USA they are from. But I can imagine them being a group of girls a similar age to Mog, getting sore fingers as they learn to respect the embroidery needles, passing the square around and learning about tensions and techniques, and all for a girl they know nothing about. Kirsten, Kate, Trinitee, and Sophie; thank you. 

I do know a number of the other stitchers, and thank you both to those I do know and those I don't; I know it was a real sacrifice of love. 

To Kat and Gaynor who run Love Quilts, to Valerie for her wonderful quilting, and to all those who have donated fabric or funds for supplies; thank you. 

I have made blankets for Mog in the past. But this is exquisite. And so humbling to think about the many many hours of work which has gone into it. 

We're at Helen House now. Mog's had a bit of a difficult summer, and we're all three of us very ready for a break. But snuggled up under her Love Quilt, Mog has gone straight to sleep even in a strange bed, with the noises of the hospice surrounding her. 

Thank you. 

Tia (And Mog). 

Happiness is

Different things to different people (to a singer, it's a yeah, yeah yeah; to a preacher, it's a prayer prayer prayer). 

To a friend it's excellent news and a new phase in her life. To her friends and family, it's big sparkly smiles. 

To a child, it's a dress, lovingly made by three girls together. And a pile of birthday presents to give to a Grannie. 

To me, it's a fixed computer, and even more than that, it's the discovery oh photos on my phone which is somehow missed when I took them.

And a photo demonstrating what happiness means to two loving friends who live too far apart. For some of us, the day this photo was taken might have represented disappointment. A day for families to come together, and yet we needed to take refuge in our tent against the rain. Disappointment maybe. But not for them. 

And then of course other memories of the sane day, of discovering a familial resemblance between a friend and a campsite's pet alpacas (sadly no photo). Laughter, shared jokes, and two children free to hold each other when no longer restricted by gravity. 

That's what happiness is. (Earworm, anyone?). 

Tia

Six

It's August Bank Holiday again. The good one, the one which marks the beginning of the end of the school holiday; get through it and chances are you'll have about a week to sort all the back-to-school stuff, dig out piles of festering school uniforms, don biohazard suits and smuggle worse than festering lunch boxes into the centre of the rubbish bin, chase up school transport and attempt to find at least one pair of clean white socks. All in the knowledge that, very shortly, you can expect to have several hours breathing space all to yourself five whole days every week. 

And if we're not away, then Bank Holiday Monday should be a day of celebration. I don't remember the reason why we have the holiday; it's close enough to Mum's Birthday that perhaps the whole nation celebrates it. I'm sure she deserves a national holiday, even if possibly that's not really the reason. 

Six years ago, I was gathering small girls (can they really have been just five and two? Ever?), and getting ourselves ready to grab the bigger girl and head out somewhere as a family, when the phone rang. 

A phone call which changed this world forever, which divided my life into before and after. 

An accident, bath water too hot, Goldie in A and E and could I come up please? 

Did you know, if your child isn't legally your own, if you're not legally next of kin, they won't let you into resus? Instead, you get to pace around outside whilst no one tells you what's happening, and you look at the pile of drunks and people with cut lips and bad coughs, and you want to scream at them all to Go Home and stop Wasting Time because some people have had Real Accidents? Yep, turns out waiting for news, I'm not a very nice or patient person. 

Did you know, when someone is badly scalded, they wrap them in bubble wrap to stop the skin falling off? And when someone has been very badly scalded, they can't chill the burn but instead have to keep warming the person so they don't go into shock, even if that means continuing to cook the scald? And did you know, if there are no beds locally, and you have to transfer to a hospital two hours away, the nurse who goes on transport won't be allowed to give morphine en route? So you'll have to go easy on the doses when you're waiting to be transferred, so they can top you up nicely before you leave. Too bad if you get stuck in traffic on the way though. 

It was morning when the phone call came; around half past eight. It was well into the wee small hours when I got back home, and I will be forever thankful to the friends who took over responsibility for the smalls so I could concentrate on the bigger girl. But I wonder where the day went? I remember the waiting room, I remember the resus room. And the ambulance, and the giant scales at the entrance to the hospital which weighed Goldie, bed and all, and the new room, and the surgeons and anaesthetist and the generally good prognosis. But I don't remember the day. 

And yet, this not remembering, this is what I remember this week. The dates don't matter; this was the day, these were the events. 

We were supposed to have been going on holiday on the Tuesday, narrow boating with friends. They went; we stayed, and the surgeons muttered and started looking more serious, whilst the hospital rules banning under sixteens kept us apart more than the distances involved. 

Six years; more than half Mog's life, and 3/4s of tLP's. How can this be? 

Did you know Goldie was not the first young disabled adult to have difficulty with a too-hot bath? "Never again" they said, after my ex-key-pupil received second degree burns in her new care home. "Never Again" would appear to have a shelf life of around five years. 

Both girls, sorry, young women, were seriously physically disabled. Both were incapable of getting into a bath themselves. In both cases, a pair of carers both failed to notice the heat of the water as they pressed the hoist control buttons and steadied the slings to slowly lower the individual. 

They deserved better. L survived, Goldie did not. Neither deserved the pain and suffering. 

I've said before I don't blame the carers, and, well, six years on, mostly I still don't. But when the thermostat had failed, and the failsafe had failed, and all the other steps had been taken to remove risk from the Not-A-Care-Home environment, those carers were the last people who had any kind of ability to prevent the accident and skip the suffering. 

People, buy your carers bath thermometers, and insist on them being used. 

Last week I watched a small girl fold herself in two and post her feet up towards her ears to prevent her body coming into contact with water which was too hot. It wasn't dangerously hot; just too hot for that small girl's comfort. A bowl of cold water into the bucket and all was well again. I know the carer who filled that bucket, and I know she would never ever do anything to hurt that child - I know how mutual the love is between them. But we do have the ability to heat water very hot, and we don't all have the ability to assess just how hot that water will feel to someone with thinner, more vulnerable skin. Buy that thermometer. Use it. And in the interim, use your elbow, not your hand. And, if you work in a residential environment where you might be taking care of an awful lot of vulnerable children or adults, don't use the line "We're not a care home" when I query your lack of thermometers. Remember my history, humour me, and use the thermometers. 

Dipping a thermometer into Goldie's bath water would have saved her life. It would have saved her a week of agony, and saved those of us who knew her and loved her six years of grief. It would have taken less than a minute, and cost less than a fiver. 

Tia

Because they're growing up too fast

tLP brought a doll to church today, a doll which was appropriated by the very delicious little boy sitting next to us, who spent the service delicately identifying the doll's various facial parts, and very sweetly playing "Round and round the garden" with the doll's hand (and then giving his mother heart failure by body-surfing the doll, which, under small child, looked far too similar to the very real baby who had been on that spot on the carpet a few minutes earlier).

tLP abandoned the doll in her quest to run around outside with church friends, so doll hitched a lift out of church and into the hall on the back of Mog's chair. To quote our esteemed service leader this morning "Tea and coffee are good, but worshipping God is better." I wonder if the worship might be better if the coffee came first? I guess the queues for the loos might be longer...

I digress.

Mog and I entered the hall, I picked up my coffee, and turned around to someone nodding at Mog and the doll perched behind her, passing comment that "You've got two babies today I see." Confused, I pointed out Mog was 11, hardly a baby, and we had a conversation, somewhat startled on his part, as he hadn't realised she was the same age as his son. Don't think he quite understood that she wasn't simply an 11 year old baby though.

She isn't. Even when she's asleep, peacefully and beautifully asleep (bar the sarcastic seizures which twitch to order whenever anyone points out how peaceful she is), she's very definitely not a baby any more.

And nor is her sister

I might still have thought of them as babies for a while

   

Because let's face it, that's adorably babylike.

And this is just silly.

But whilst she might still enjoy cuddles on my lap, and whilst she might still need certain care not dissimilar to that I might give to a baby, I know of no baby who can be as insultingly sarcastic as Miss Mog, without ever having to utter a word aloud.

Here's to the next eleven years!
Tia

Bury me in paper

Because I'm currently attempting to deal with a pile approximately six foot deep.

A while ago, I realised the girls' passports were on the point of expiry. Being the active, coordinated, organised person that I am, I waited until they had both completely expired, and then filled in various forms online to begin the renewal process.

I then put the passports back with the savings books, made a mental note of the fact Mog's SGO paper wasn't with them, and waited for the prefilled forms to arrive in the post.

Meanwhile, letters arrived warning me the girls' blue badges were due to run out, and inviting me to apply early for replacements, as they could take ten weeks.

These I shelved with the passport applications and tax credit stuff. And tax return stuff until I had a chance to get into town with both girls for passport photos.

Interlude for spinal surgery, convalescence, and a sick Mog.

And then a sudden, panicked realisation that the blue badges (disability parking permits) were due to run out next week, and that the 8 week renewal period would not condense itself into 8 days.

Fun fact: to renew an application for a blue badge now requires more documentation than a passport renewal.

For tLP's passport application, I must supply one form, correctly filled in, one expired passport, two photos countersigned on the back, and a fat cheque for sum as yet undetermined.

For tLP's blue badge renewal, I must fill out one form online, and consent to the powers that be contacting her school for proof that she really does live here. I must supply proof that she she is physically disabled. I must supply a passport photo. And a birth certificate or copy of her adoption order. And a cheque for five times as much as the badge used to cost.

For Mog I need also to supply a copy of her special guardianship order for her blue badge, and the original SGO for her passport.


Blue badge being more urgent than a passport, I decide to focus on these forms first. They take me three days. I am invited to pay electronically. I do so, only to be told online payments (the one they just collected all my credit card info for) are not possible. Frustration.

So, Blue Badge paperwork eventually collated, 14 digit tracking order attached to each pile of paperwork together with note explaining special guardianship. And then the memory that the SGO paper was not with the passports.

Nor is it with the other pile of important documents. Not in the filing cabinet, not in the emergency paperwork stash behind the computer, not in the Very Important Stuff drawer in the dresser, not in any of the book cases...you get the picture.

A thought. We always take it with us when we travel abroad; it is the proof that I am one of Mog's parents. The passports came home but the SGO did not; could it be with my friend and travel mate's paperwork?

Problem. It's been six months since we travelled, and friend has some memory problems at the moment.

Amazingly; friend puts her hands on the SGO within 2 minutes of my phone call, and brings it round.

Marvellous.

Paperwork finally complete, I am about to seal the envelope, when I realise sending the SGO off with the blue badge applications will mean I cannot apply for a passport for another 8 weeks. Not that we have travel plans, but I do like to think we might one day.

So a further delay whilst we run to the library to photocopy essential documents. And finally, finally, the Blue Badge paperwork is on its way.

Meanwhile, I attempt to fill in the passport applications. And immediately manage to invalidate one form by signing in the wrong box, and the other by putting a Date of Birth instead of a Date of Signing. Deep sigh. And off to the post office for new forms.

So, new forms signed. Friend primed to ID the photos. Two neat envelopes with everything we need. Just need to add the expired passports.

The expired passports which I haven't seen in any of the mammoth paperwork hunt I've done over the past couple of days. The expired passports which I put in a safe place with the savings books.

Anyone seen them?

And will I find them before I lose the application forms, or before tLP runs over the photographs again?

Can it please be September soon?

Hailstones and harvest

Because its been a random kind of day.

Tia