The idea of difference

The children have been dealing with ‘school issues’ the last couple of days — one positive, one negative. At M’s school, one boy said terrible things and behaved terribly — for two days — before the school caught up with him. Things about people with diabetes being ‘spastic’ and having no legs. He drew pictures, and taunted M. Needless to say, despite stay off the subject advice from us and from a teacher, by the second day of this, she flipped. It’s all been dealt with… but she feels these things deeply. She wishes more people understood. She wishes she didn’t always have to be in the position of explaining what diabetes is, the distinction between type 1 and type 2, how hard it is to manage, and how she worries about her brother…

It’s a bit much for a ten year old really.

By contrast, yesterday at school E’s physics teacher completely silenced similar taunting. This is a fairly common occurrence which E seems to weather well: boys tease him quite a bit about being diabetic, make fun of his pancreas, say hey he can’t have juice where’s my juice, etc. The distinction I guess between M and E”s situations are that in E’s case, the boys kind of know what’s going on. At M’s school, they are speaking from complete ignorance, and are therefore near bullying.

Anyway. Yesterday E had a hypo in physics, reached for juice. One boy said hey sir he can’t have that! To which the teacher responded yes he can, he’s diabetic. The same boy then said ha ha let’s all laugh at him because he’s diabetic. And the teacher, totally deadpan, said I don’t think that’s funny at all. My daughter is diabetic. I wouldn’t want her to go through what you’re doing to E, and I wouldn’t want E to go through what she does when she’s low.

Apparently the class just kind of froze; the whole atmosphere changed. The teacher is a favourite of E’s anyway. Turns out his (grown up) daughter was diagnosed just a few weeks ago. E came home feeling that someone understood.

That’s all it takes.

***

M and I talked alot yesterday about how when something like a diagnosis of diabetes happens in your family — it could be anything that marks out one of you as ‘different’ — people automatically read it as ‘not normal’. In fact, you yourself, until you get used to it, read it as ‘not normal’. And the difference weighs so heavily. You feel out of the stream of life, isolated, cast off. Difference of any sort is so very bulky to manage, trying to figure out what to do with it in your life.

Last night M said that ever since E’s diagnosis she’s been working hard to try not to pigeonhole people. She said that she used to be frightened of how different people looked in hospital, or on the street, in a shop. She used to be afraid of difference.

Perhaps we all are at first. But it’s not so difficult to change this. It’s not so difficult to expand our notions of what is ‘normal’. In truth, ‘normal’ can hold everything, every difference.

Our job I guess is to keep forcing people to expand, to open up. To educate. To push for acceptance at the deepest level. To keep people from turning away.

It’s not easy. But it needs doing badly. For all our children and their futures, whatever they may hold.

Our babies

Of course I cannot go another minute without noting the progress of our kitten babies since I posted in the autumn. This is what they looked like at about 14 weeks. R had gone into the bathroom (where they had been placed to be safe from the vacuum cleaner!) to collect them all up to take to the vet’s for their vaccinations… and he found this. They climbed up there all by themselves. The caption is his:

 

"But we don't want to go to the vet's..."

 

Since then, three of our lovelies have moved on to happy homes. Eudora — Miss Fiesty and adventurous, first out of the box and always up for a good time, was first to do in early December — on a plane back to the States with my sister, B! Oh yes indeed. Little Eudora was apparently a real trouper, traveling to the airport, on an eight hour flight, a two hour stopover, then another hour flight and another drive — all in a gorgeous padded carrier. In hand luggage. Wow.

Artemis and Athena went together to a fellow musician and sister-in-law of a work colleague. We met on a snowy day in the middle of England to do the transfer. The family have always had long-lived, indulged cats — and from the pictures being sent back to me, they have already started down the road of happiness there! Artemis and Athena both emerged as company-needing, extremely loving, cuddly cats. They desperately needed to be together, so I’m so glad they could be.

It’s been a real joy to give them such loving homes. A great relief.

So we have Archie — Archimedes — now as the sole little one. He’s the really laid back kitty second from the right. He and Schubert have a good relationship, sometimes sleeping together and often playing. Schubert can nearly squash him however! But Cleo (mum) almost always gets cross at Archie. She sniffs and plays a little, then growls and bats… It’s kind of sad. Poor Archie. He rolls over and gazes up at her: love me!

He cried for two days when the others went. And the grown up cats were like what you want us to play?! Where are your friends?

He is a stunning young lad though, just beautiful, and very loving. I think sometimes he is still a little lonely — and a mixed message mum doesn’t help — but we give him all the love we can. He also likes to sit and stare at the guinea pigs, occasionally prodding them gently. Bless. Shall try to get a good photo of him as he is now.

***

I’ve sort of thrown a table of blood sugar levels into the sidebar for people’s reference. I talk so much about levels and what is target and what is low and what is high, that it does seem a good idea to follow my sister B’s suggestion of putting up the basic info. The sidebar widget though doesn’t have any formatting with it unless I write it in HTML, which I don’t really know…so it’s really DARN basic right now, though I’ll keep after it.

I did want to say though: notice how narrow the target range is. And shall I shock you by saying that in the last two years I think that there have only been about four days (eg 24 hours) when all of the fingerprick blood tests have shown E in range. Of course between them he may have been all over the place. And what’s for sure is that generally he’s all over the place. As everyone with diabetes often is. This morning he woke low. Before dinner last night he was high. Etc.

No wonder it’s easy to feel like you are always, always doing something ‘wrong’. Not to speak of fighting a losing battle.

Also just to let you know: E was 32 mmols at diagnosis. And on Sunday I heard of a friend’s relative who was admitted to hospital with a level of 72 mmols.

So aiming for 4-8 mmols can sometimes feel like threading a camel through the eye of a needle. Despite all the hope of reduced complications it brings.

 

Resolutions

Hello everyone. And hello again. So many hellos indeed that it’s hard to know how I will start this post… Apologies? Reassurances? Thank you firstly to those who sent messages via email or facebook about whether we were okay.

Yes, we are really fine. Truly fine. I just had to let things slide in the middle of what was the busiest teaching and admin term for me in several years. It became a case of only the absolutely essential bits of life survive! And the blog just went — poof! — like dust. Before I knew it so much time had passed. It is only with the New Year now upon us that I can sit back a little and think now I can get back to this. Thank goodness.

Because I’ve missed it. Lots.

***

Catching up info: E is now at least three inches taller than me! Yes, choke in surprise. It has happened so fast that I keep thinking he’s either wearing heels (not likely!) or standing on his toes (also not likely since he gave up dance about a billion years ago). He is now creeping toward his father’s height of 6 foot, which his father categorically refuses to acknowledge. M too has shot up: fits my shoes and also wears the smallest women’s size 6 (uk, that is. American it’s 2 I think?).

What the heck?

But it’s the sheer food consumption that is doing our heads in. Forget monitoring carb intake. Just forget it. The best we can do is try to get him not to eat too late in the night, so that we don’t have to get up and test. He’ll sit down and have 400 g of mashed potato, eight small sausages, and a pile of vegetables. Faster than any of us can finish our meals, he’s done and standing up for ‘more food’. He returns to the table with a cereal bar, a pot of yoghurt, more sausages… Our food bill has gone up by 50% in the last six months. SO alarming. He eats all the time. We go through boxes of cereal bars, probably one per day. He also doesn’t seem to want non-carb, like meat and cheese. He really, really wants carb, big time. His body must just be building itself, putting together the infrastructure, like constructing a building… It’s incredible to watch.

I realise I’m not telling you anything many of you won’t know. But I am really reveling in it: his growth means his diabetes is controlled. Which is a source of intense relief.

And controlled it is. The last HbA1c was again very good. This is not to say that we don’t have days of weird swings and runs of highs and lows — but we are blessed with a young man who is admirably keen to stay in some control. He never does not act on the information his testing kit gives him, and he never (unless out with friends in town) doesn’t test. This is hugely to his credit, and how very lucky we feel in this.

Case in point: yesterday he was inexplicably 16mmols before lunch. It scarcely matters how that happened, and although it was less than two hours since he’d eaten his snack, he still felt the number was too high. So he overrode the pump and gave himself a partial correction. By PE two hours later he was down to 6mmols — he didn’t eat to bolster up for exercise because he was worried about having been high (is this a run of highs? for instance), but within an hour he’d hypo-ed and had to stop. He treated, and by the time he was home he was a nice even 7mmols.

I told his father the story. He’s a good lad, he said. Indeed. Much better to have tried to get things lower than leave a high and allow himself to get insulin resistant. We know by now that if we don’t act quite harshly, he can stay high for hours sometimes, depending on why it’s happened. In this case, it was inexplicable. He rightly thought the mostly likely reason was not because of a previous bolus, but because of feeling slightly ill, or from a cortisol high. It was unusually high even for the middle of a bolus.

As it turns out he probably didn’t need to do this, as evidenced by his quick fall in blood sugar. But better to do what he did. 

***

Enough extolling! Suffice it to say that we press on. Funny night highs continue, and we just tweak the pump when we think the high might have set in…whereupon it goes away and of course he’s too low. Sigh. We’ve had a good enough few weeks at the moment such that we are hardly ever getting up to test. Thank goodness, because we have been on the floor with exhaustion, both of us. E understands this, and is careful not to eat late if he can help it. We also almost always aim to have any pasta or rice earlier in the evening — before 7.30 pm — so that we can test him right at the end of the dual wave, at 12.30am. I confess that staying up even that late is fairly dire. And once last week OH spilled hot tea over himself in bed after falling asleep waiting for the right time to test… But it’s better than a 3am alarm, for sure.

***

While I’ve been away, some folks have carried on an intermittent reflection over on A Place to Talk. And one question that’s come up from Angela is what people think ‘triggered’ or ’caused’ their own or their children’s diabetes?

Medicine knows quite a lot about genetic predisposition and about viral triggering… I can trace I think E’s trigger through to a stomach bug he had in Italy in 2008. Everyone else had it too, though we only had cramps. He had cramps AND a fever, was really quite poorly. Three months later he was diagnosed.

What are others’ theories, and experiences? As Angela points out, it can feel so random, especially, as in her case and many others’, there is more than one child in a family affected?

And of course it can feel unfair. Does feel unfair. Is unfair. And arbitrary. And stupid, stupid, bad luck.

So there.

Any thoughts welcome.

For now: great to be back.

Growing pains

Well, things have warmed up here in the SE of Britain — even the rain is warm now — and with my hut days finished (sniff! pictures to follow) — my attention is turning to a) getting another hut; b) the garden and c) external examining, planning for next year, my own exam boards and and and…

Guess which one of the above actually takes up the most time? Yes, it’s the last one (Eeyore-ishly said).

ANYWAY. I’m mainly on here today to say that much as I adore my fast-growing beanpole of a son — who since Christmas must have grown three inches and now stands substantially taller than me and taller than his grandfather and not a million miles away from his *father* — we feel locked in a bit of a battle with it.

Herewith: went to clinic on Friday and the ol’ HbA1c (complicated averaging of blood sugar levels over three months) is the highest since diagnosis, and outside of high ‘normal’ for the first time too, eg over 7mmols. Damn. And other, much ruder, words.

We think we know some reasons for this:

1) all the fuss with the sets messing up. We had some stupendous, recurring highs with those problems, and knew that this alone would affect this HbA1c. (The new Silhouette sets, I am pleased to report, are still MUCH better, despite having been yanked out again by accident — ouch — in a game of football at the weekend. We were all no doubt suffering from sunstroke, because in that sort of running around he should have had it off anyway, but oh well! Soon replaced, bravely.)

2) growth hormones. Bane of everyone’s existence blood sugar-wise, except that of course growing is good. Very good. But after a couple of weeks of high mornings, then suddenly we had another week of low mornings, then you guessed it, another week now of high mornings. Bit disastrous. We just begin to think we need to change the basal rate from 12am-3am, and bingo! The trend has reversed. This is probably almost exclusively down to growth hormones. And probably too indicates that in the night all kinds of highs are happening about which we have very little awareness. This is disheartening in itself, as we are trying so hard. But we suspect that this is at the root of his higher HbA1c. We simply aren’t catching the night highs well enough.

3) Being slightly more laid back about numbers. This is a good thing, again. Healthy and to be desired. But perhaps we have let a little too much slide? The increments of vigilance are just so tiny, yet seem to make such a difference. Damn. We are NEVER complacent. But taking our feet off the gas is something we have done a little… But maybe we have allowed the car to slow just too much in this 50 mph zone…. Argh. You get caught by the camera whether speeding OR going too slow….

***

So I won’t pretend we aren’t a little bummed from this recent number. The doc however says it’s still WAY better than most adolescents manage to achieve. Be that as it may, we are used to better.

So, again. What are we doing about it?

1) Last night we went ahead and raised the basal for a couple of hours. He had a steady night on 6mmols.

2) We are trusting that the new sets (with their clear stability) will impact the next measurement.

3) E is expressing a clear desire to try a CGM(Continuous Glucose Monitor). This device measures the blood sugar level via the tissue rather than a pinprick, and is in situ for 7 days at a time. It is not entirely accurate, and you cannot dose insulin or take any real action on the basis of what it reports to the pump…However, you *can* ascertain trends in blood sugar, which will be enormously useful to us in a time where we are suspecting that we are missing highs. It is extremely good for discovering patterns, and we are extremely fortunate to be funded for it in our area. This, we hope, will help, even in this seemingly pattern-less time of adolescence!

It is to E’s credit that he now is firmly for trying CGM. It involves another ‘thing’ in him at all times, and another 45 degree insertion, which is what put him off it entirely initially. Now that he is used to the other sets, he is stepping up his game, and can face it. This is his decision.

Once again, I am proud of him. We are proud of him.

Chasing all this all the time is a true pain. And incredibly inconvenient in his life. His sights are set though. He knows he wants good numbers. And we will do everything we can to help him get them for as much of the time as seems sensible and realistic — and not obsessive.

So in two weeks we will attend our other clinic, at our shared-care hospital, to learn how to do the CGM insertion and set up the sensors. Deep breath.

Over the hump (one of them, anyway!)

Hello everyone! 

I’m at last in front of an actual computer to write this (get ready for nice colours). The sun continues to shine — and we had a fabulous break. Yay!

Here’s what went well:

1) LOTS of good numbers, even with at least three days of fairly constant walking/hiking/splashing in cold lakes. (Thank you, not for the first time, the team that made temp basals. A godsend. For half of one day, we put E on a 0% temp basal, eg NO insulin dripping in. And for one night, we put him on 50%, because of exercise. All complete guesses. BUT THEY WORKED!)

2) One, count it, ONE hypo in a week. Out of routine, LOTS of cake, lots of guessing carb. 

3) Only one day of inexplicable highs: all day in double figures. Oh well. We just pumped the insulin in, put him on a 120% temp basal, and by midnight he was down again. Growth?

4) Both of my children seemed to grow daily while away. Like plants in the spring with sunshine and showers. I kept thinking they were standing on tip-toe. It was incredibly peculiar. E is now clearly taller than me. His eyes are at my forehead. When he throws his arm around me, I’m like his little sister. Eek.

***

The best day for me was our first real day of walking. We had a close friend staying, and chose Cat Bells to show her and climb with her. We’ve done it twice before, before diagnosis. It was a gloriously sunny day. The way was crowded, but everyone was in good spirits. One of the joys of Cat Bells is the height gained so quickly, and within minutes we were treated to breathtaking views of Derwent Water, Bassenthwaite etc. As we climbed, the view just opened out more and more, til at the top of course it was 360 degrees of mountains and lakes. The weather was perfect: sunshine, not too hot, no wind (even on the tops!). 

It was the longest walk we’d tried since diagnosis. The only hitch had been starting high — a forgotten honey on the toast dose! — but with insulin in to correct, and with the hard slog, E dropped from 17 mmols to 6 mmols in 20 minutes! We then put him on a 0% temp basal for the whole walk, and gradually raised it through the evening. No hypos. No highs. More cake. 

We all got a little sun, and look about ten times healthier than we have in months I feel.

I also feel that we can do anything now!

I know we can’t. Without lots of planning and thought. And without lots of intervening low times. But the relief of being able to do this without panic, without short term or long term danger is intense. 

The relief of being able to enjoy something, really revel in it, without the tight knot of worry or fear… is an amazing feeling.

***

Okay amongst the small things that didn’t go well is a distinct lack of photographs taken by me! Argh! Obviously delirious with joy at our successes…However, in my search for Cat Bells I have discovered a fabulous site: Striding Edge. Absolutely brilliant walks and photos of one of our favourite places in the world (so far!). Nearly 25 years later and we have not tired of it.

Here’s one of the site’s photos of the walk to Cat Bells. It shows a rather busy, sunny time, which is just what we had. A bit of a party atmosphere, actually! Enjoy.

 

copyright http://www.lovethelakes.net

Friends

I have heard from two parents today: one, H, whose son was diagnosed only 10 days ago.

For both, and for me and us, the lasting through is so hard. The holding-up. The way your life is shipwrecked. And you have to wander around, slowly re-collected, gathering up, all the pieces, new and old.

I find myself being in the position of old hand. 18 months in. Like in grief, you watch yourself move further away from that moment of change, that time of unremitting despair and numbing hard work.

I guess all I want to say is that it’s not that I don’t remember before diagnosis – it’s that I can’t, without the same crush of sadness as I felt at the start. So I don’t take myself there often.

So in that sense, um, I guess I’m not much help. Sorry.

But in every other sense: we help each other. Our children will grow up strong and healthy. Burdened – yes- but like us, with a deep understanding of what’s important.

They didn’t need this. Nor did we. Nor did our families.

Damn.

Thank goodness for small mercies. Friendship of a whole new type, to a whole new degree. Even in passing it means something real.

Hang in there, all of us.

– Posted using BlogPress from my iPhone

Location:Tile Kiln Hill,,United Kingdom

Diabetes metaphors

My friend’s son’s diagnosis of course is still at the top of my mind. And I’m struck by something her message to me yesterday said: I know it will be like trying to carry water in my hands.

Indeed.

This seems a particularly apt way of describing the first feelings, like nothing stays with you for long. Like you start off on a walk, with your hands full of the stuff, then you take three steps and they are empty. So you go back and start again.

In our house we use the pedaling a bike slowly uphill metaphor. I think of how the front wheel twists and turns in this situation, how you just about stay on. This is how we feel. Most of the time.

And in another entry, the running for the bus one seemed best: you chase after, then when you finally get on it, you realise you should be on the one way over there, on that road.

***

These are all quite depressing ones, really. There must be some moments of relief. I’m thinking of my friend H here and her son. What to tell them?

What are the moments of your or your friend’s/child’s care like? What images occur to you in the middle of the night, or in the day on your own, or when you think of the people you love? Have the images and metaphors changed over time, or like us, do you have different ones for different times?

I’m just curious. Because I know that thinking through metaphors somehow helps me cope. It helps me express and articulate these complicated sets of feelings as nothing else can. I feel like there I’ve said it. For the moment, anyway!

***

On the home front, after a few days of highs and raised temp basals (more insulin dripping in), we realise that we are back where we started after the last unexplained round of lows. Sigh. Spluttering pancreas, growth spurt, infusion set site? Who knows. Two mornings now of finally waking in target. 

What would be the metaphor for this?! Two steps forward, one step back? No, that’s a cliche, and different.

How about following an overgrown path until you reach a sort of clearing. You take a breath, but then realise that the path continues out the other side, and that you must follow it. It’s a bit of a slog, lots of cutting back and hacking through. But you do it. When you arrive a the next clearing, after a few minutes it dawns on you. Yes, it looks familiar. You were here before, only now you’re approaching from another angle.

***

All being well I will update in the next couple of days about the school’s talk with M’s year group, the Bayer Contour USB. And maybe daffodils.

The next day

I’ve heard from my friend again, another day on into diagnosis. Her son is coping well (as they do), and the information they are receiving meshes with information I passed to them. Thank goodness.

When I told E about my friend’s son’s diagnosis, he was quiet. He then said, Tell her it gets easier, but it’s never easy.

There you have it.

Diagnosis

I was going to write something completely different today. Yesterday was my birthday, and — despite E running consistently high now for two days, irritating but welcome growth spurt we think — things have been good: he took his Grade 7 piano exam and it went well. Daughter M won a poetry competition at her school — and played well in a concert last night.

***

Yet. This morning I open my work emails to find one from an ex-student and long-standing friend and colleague: her 12 year old son is in hospital, diagnosed yesterday with type 1 diabetes.

Aside from being heartbroken for her — such a blow, just a blow for her and her family — I was overrun by things I wanted to tell her. This is where I started:

Resources: Children with Diabetes UK, JDRF, and Diabetes Support Forum. Book: Type 1 Diabetes in Adolescents, Children and Young Adults by Ragnar Hanas. 

 

Make sure he gets onto MDI — multi injections. Then say you know all about pumps and you want to get on the list. Ask to be taught carb counting as soon as possible.

 

DO NOT let them tell you to bring his numbers down mega-slow. It will take a few days, but sitting around 13+ is NOT right. Keep on top of changes to the amount of insulin so that he comes down in few days. We sat with high numbers for several weeks.

 

DO NOT let them tell you that he can’t eat this, and can’t eat that. We received advice that was more suited to type 2 when E was diagnosed, and it was devastating. Your son can eat a normal healthy diet, with treats etc. He can only really do this when you learn to carb count — so that you can always cover what he is eating with insulin.. Things like brown bread or brown pasta being better is NONSENSE. In fact these are harder to dose with type 1, because they take longer to digest and therefore you can’t be sure that the insulin with the meal has covered them. What you DO need to watch while on MDI are snacks without injecting — these will send his blood sugar up quickly. You need to keep them small or carb free: small packet of biscuits — or better, cold meats and cheese, which have no carb. We can talk more about this later.

 

Also, I would advise regularly testing before a meal and if you can bear to, 2.5 hours after as well. This will help you quickly learn how his long term insulin (Levermir) is working (before the meal) AND how the short-term (Novorapid) is working (after the meal). When E was diagnosed we were only told to test after eating — and this was patently outdated and darn near useless. We had no idea what was happening with his blood sugars for several weeks.

 

Get Lucozade in the house — the fizzy stuff, if he likes it. Or small cans of coke. Glucose tablets and jelly babies work well, but fizzy is faster. Also small cartons of apple juice work very well. Get 15g carb snacks for after hypos: pre-packed small packets of biscuits like maryland choc chip or mcvitties digestives. Spread these things around the house — in his room, in your cars, in the kitchen. He will come home with a lot of kit. Empty out a cupboard in the kitchen and keep everything together.

 

The team at [our local hospital] are very nice, but not always up to the minute. Get yourself onto Children with Diabetes UK AND join the Diabetes Support Forum…. Go to the Parents’ section and put yourself on it. You will find a huge amount of support.

 

Oh dammit, H. It’s a hard road. I’m so sorry.

 

Call me when/if you can. I’m here.

 

Sorry if this is information overload. It will make sense very quickly though, and I wanted to tell you some things.

 

I’m so upset for you and your family. It will get much better, but…cry all you like. I cried for weeks and weeks and months. And we still cry now.

 

xxoo Patricia

***

That’s really all I want to say today. The same age as E at diagnosis. She said in her note that she kept up with this blog. And that she used it to learn some things before they went to the doctor’s with what they suspected.

 

In my head today I am re-running the scenes of diagnosis, and the horrible sense that we thought we were learning when in fact we knew so little. For so long T1 seemed difficult, but doable once we ‘figured it out’. The real sinking heart has come over a number of months, even a year, with the realisation that we will never figure it out. And that some of the initial information we received was inaccurate, plain mis-leading and patronising.

 

Another time I’ll make a clearer list of what I would have found helpful at diagnosis. It’s so confusing. But for now, well. I wish her luck, and wish, as I so often do, that I could just take this away from our beautiful children.

On the way back from the hospital

When E was diagnosed he stayed in a nearby hospital, about 30 minutes away. It isn’t our local one, but has a paed ward, etc, so that’s where he was.

I’ve since had no reason to go back. All of our consultant appointments are at the local hospital or at our shared care hospital some one and a half hours away.

I went back two days ago to pick up a CGM for E — great news in itself, and more on that later.

The ride there wasn’t great, but I was under some time pressure and that was occupying me. Then when I arrived, it began to hit. I remembered that day. OH had gone ahead with E, and I had joined from work. I remember not being able to find a parking space. And becoming hysterical, screaming and crying at the parking attendant that my son had just been admitted. Literally. I remember being completely and utterly beside myself, so desperate to get into them, although I knew that they would just be sitting there waiting to be seen….

Back to two days ago. I picked up the CGM. No problem.

I got back in the car and started driving out. And was overcome by memories. How I rushed to get back to my daughter, still at school, driving down the getting-dark road. How my father-in-law rang, having found messages from his son left all over. I pulled over to speak to him in that petrol station. My father-in-law, a retired doctor, took the symptoms from me. I sat there and said it over and over. I don’t know what he thought of me… Then, he was quite silent, and said he would phone the rest of the family.

So two days ago I drove back on my own just as I had done sixteen months ago. It was darkening then, and darkening now too.

I wish it had never happened, any of it. And I don’t like going back to that time, though clearly it is never very far away. For me, remembering what things were like before diagnosis is one of the very worst aspects to all of this. Does that sound selfish? And specifically, it’s the memory of how I felt about the future, what I thought the future would be like. I know we can’t predict it. But not knowing is part of the lightness, the hope and possibility of it.

The drive back from the hospital reminded me how very heavy diagnosis is. The weight of it and all it means. The whole future, so many ingredients of that future, barreling in on you, immoveable, endless and permanent. And worse, this future is your child’s. Your child has to face more in the future than you ever, ever did or wanted to. And none of them are positive, or even, I have to say, particularly hopeful.

As parents and carers and believers in advancements and how our attention can help, we search for brightness. Which is our job, and the best we can do, yes.

Over time, we have all pushed our way out from under it somewhat, but I have to confess that with diagnosis a rock became lodged in me. Perhaps like a gunshot, or shrapnel. And it’s like lead, dragging itself to a memory or a feeling, stirring just when I think so much has grown up around it.

And I’m going to share something else. Soon after E’s diagnosis, in one of our tearful heart-to-hearts, my daughter said it all so well. She said, now I know what forever is.

That’s right. And it’s not really a thing to know. It’s so heavy to carry around.