One of the many things I’m grateful for are the unique experiences that have been afforded to us since Pumplette became host to our uninvited guest almost 11 years ago. From Jeff’s skydive, way back in the spring of 2004, when he raised a phenomenal amount for the children’s hospital that had saved our daughter’s life, through his many sporting achievements since (half marathons, full marathons, entire Mars bars, cycling odysseys, the list is endless!) and our opportunities as a family – indoor skydiving, ambassador roles for all my girls – to visits to parliament for Pumplette, we have embraced every new experience & opportunity as a blessing. Changing something we’d rather not have known about into something that holds many more positives for all our children.
I guess we are, fundamentally, an optimistic family. Life experiences have taught us well to live now & be so very grateful for all that we have. That my biggest gripe regarding her medication is that I actually have to remember to order it, not whether I can afford it, is a first world problem I can happily embrace, for it is a privilegenot afforded to far too many.
Last week, Pumplette was lucky enough to be invited to finish what she started & deliver JDRF’s Count Me In petition to Downing Street. Throughout this campaign JDRF have been garnering support calling for more governmental research resources to be channelled toward research into the causes, prevention & cure of T1D. Their aim was to highlight how much cross over & insight into T2D there is stemming from T1D specific projects. Sadly the reverse is not so true with the cross over to T1 relevance being much less. So whilst the numbers assumption is to plough money into T2D research as it affects so many more people, the reality is that research mainly helps that cohort alone. Whereas T1 research has a massive cross over & indeed there have been many advances made into the treatment of T2 as a direct result of research focusing on T1.
Pumplette has been the “face” of this campaign, and, although very biased, I felt it apt that this should be the case. For over the past decade, she has seen massive changes & benefits in her regime, all of which started on a bench in a lab. Fabulous research, driven by people who weren’t prepared to accept the status quo. Who may never know the impact their discoveries & developments have had “in the field”, but for who’s tenacity & determination I am eternally grateful.
Whether our current government pay full attention to the voices raised within the many thousands of signatures, time will tell. However, as the optimist I am, I am hopeful that even if it is only a humble civil servant who reads & responds to the petition, & it raises the profile & challenges faced by all who live with diabetes to just that one extra person, then that is another one who can join our voice. For if I have to tick them off one at a time to bring about a change, I will! And my daughter’s future will be bright.
You know the scene. It’s breakfast time, on a school day, and there are 101 tasks to complete in an infinitesimally tiny timescale. Any deviation from breakfasts x3, showers x4, clean uniforms x3, lunchboxes packed x3, piano practised x3, singing practised x2, dog fed x1 & endless supply of tea will send this well timed operation clattering violently off course resulting in children 1 & 2 completing the walk of shame to sign the late book!
It is with this backdrop then, you’ll understand the routine does not allow for a pre breakfast hypo. This phenomena is, obviously, grim for the host to endure, but it does have the ability, more than any other timed hypo, to frustrate the usually placid & calm facilitator!
Pumplette wanders into the kitchen….
“Morning darling. I’ve made you some tea. What would you like for breakfast today? Your kit is over there. Would you mind checking your bloods before breakfast whilst I go & shower?”
Me, (returning to kitchen), sees full breakfast bowl, still waiting for milk, on side. “Pumplette?!!” No answer came the reply.
Look in the sitting room to find Pumplette engrossed in German spelling homework.
*squeaky voice fresh from the same stable as the ministry of silly walks!*
“I don’t know!”
“Did you check your bloods?”
*new voice from ministry of silly squawks*
*Me, trying to remain reasonable*
“Are you low?”
*more daft voice work*
“Maybe. I may be 3.1″
*Straining to keep the irritation out of my voice*
“But you’ve had some lucozade?”
“I’m doing my German & I’ve got every single spelling right!”
*No pretence of calm. Full on irritation*
“It’s a spelling test, Pumplette. Not a copying one….
Please come & have your breakfast now.”
“But I’m looooooooooooww!”
*child in me starts to stamp feet*
I momentarily start to argue the toss, forgetting that this is a hypo where everything needs to be presented to the host, who’ll continue to look at you, utterly bemused, whilst you patiently cajole them into consumption!
I do try to remain calm, but when the accompanying background soundtrack to this scenario is another two girls faffing around looking for hairbrushes, tights, blazers, books, completed permission forms etc etc., it’s often beyond me!
Actually. Given all these things, it’s a wonder we ever manage to leave the house at all, never mind adhere to a deadline for school arrivals!!
Then of course, as I drop them at school, there’s always the final parting exchange….
“You’ve got you blood kit, haven’t you?”
*repeats school run for a blood kit*
Sitting in a cafe drinking tea whilst watching my daughters swim, I couldn’t help but eavesdrop on the conversations of other mothers, whilst trying my best to stay focused on my latest reading matter. The women on the adjacent table to me, seemingly oblivious to the public setting & having exhausted themselves in a relentless round of “My child is better than yours…”, turned their attentions to some of the other children enjoying the giant inflatable obstacle course in the pool. Idle chit chat suddenly dropped to a level of discretion hitherto unseen that morning. I had to strain hard to hear! This will teach me not to eavesdrop, as they were talking about a child who had things attached to her. What were they? What was wrong with her? Doesn’t it look awful? Such a shame. Such a pretty girl too.
Yes. You’ve guessed it. They were discussing Pumplette & the audacity with which she flaunted her pump & cgm (worn on her arm that day).
I froze. I couldn’t reasonably interject at this point as it would have been abundantly clear that I’d been deploying my hawk hearing. However it did force me to pause & reflect that this is often a common reaction from strangers (or muggles as we know them to be!) toward amazing technology of which they know nought & have not the slightest comprehension how it has utterly transformed this magical little lady’s life.
For Pumplette is unabashed when wearing the technology that helps her make informed decisions on a day to day basis. She forgets that they’re there. She doesn’t hide them, isn’t embarrassed by them, & will patiently explain their function when asked.
But this is the rub. So normal to her is this apparatus that she forgets others see it as alarming or uncomfortable. I love this fact. To me it indicates a healthy, robust mental attitude to her condition & her management of it.
And yet I worry. I worry that because of the repeated actions of these muggles, (strangers, acquaintances & peers), she will learn to be embarrassed by the technology she so loves & embraces.
The herd mentality is embedded in our DNA – acceptance is often an important aspect in human behaviour. Will these whisperers derail my daughter’s show, cause her to doubt her enthusiasm for her kit, and lead her to neglect her health whilst she grows in maturity & understanding? I sincerely hope not. And I will do all in my power to ensure that’s not the case. Because that’s an important part of any parenting – helping your child to recognise how utterly perfect unique is, that the herd is a much better place to be when frequented by individuality. And that that individuality is to be celebrated & not regarded with suspicion & ridicule.
I’m pleased to report, however, there are as yet no signs of her hiding away. Instead she seems to be gaining confidence & swagger in her stride with every passing day.
As it’s almost Halloween, I shall finish with an old picture of Pumplette rocking her pump,(and the entire party’s passes!), dressed for a Spooky Fest in Singapore.
This week sees Pumplette heading off with 106 of some of her closest friends on a school trip, rampaging through the capital city all in the name of education & enrichment. I’m very excited for her – the itinerary has me green with envy – and I know the entire week will be spent in a heightened state of excitement & sleep deprivation!
However, when I wave goodbye to her in the pre dawn twilight of the morning, I will confess to hiding my anxiety that she’ll return home having had nothing other than a hugely exciting adventure & a bag of dirty laundry. For it isn’t just my second born I shall be waving off in the morning. The numerous bags that will accompany her are the only external indicators that I have packed for two.
T1 is more demanding than a toddler throwing the mother and father of all tantrums. Indeed, Pumplette’s T1 will be rewarded with a case all to itself. There’ll be pump supplies. Blood testing kits. Insulin. Hypo snacks & drinks. Spares of all the above. And then spare spares. Just in case. There are crib sheets, short cuts, apps for teachers & a plethora of phone numbers all in the name of T1D. It’s not for Pumplette these are necessary, but for that fickle shadow that will insist on mirroring her every moment!
This year, however, I feel very fortunate. The team corralling 107 children this week are exceptional. The team leader & Pumplette’s group leader, who is also epically picking up the night shift too, are completely amazing. We have had but one meeting, deliberately low key & involving only us, to ensure they’re confident in the processes we have laid out. Crucially for Pumplette, and me, they have the upmost respect for Pumplette’s superior knowledge & understanding of her T1, and they fully recognise she will be unlike any other T1 child they’ll have taken away before. It’s this appreciation alone that helps to ease my angst, for I know they’ll listen to her and or defer by phone to me if they’ve an issue. They understand that I simply cannot document all the nuances involved in the management of T1 for them.
So in the morning, as I wave two bags & a Pumplette off on their exciting adventures in the big smoke, I shall make sure that she sees the big smile on my face for all the wonderful things she will experience & that I keep my anxiety well hidden from her. For I don’t want her to think I doubt her abilities. Quite the opposite. I know my days are numbered as I become increasingly obsolete in her day to day dealings & management with T1.
NB: If you are concerned about the support your child is receiving from their school, you can find information & support here at Diabetes UK Make the Grade campaign.
Back in the summer I was asked to write a piece for Carbs & Cals.
It’s up on their site now – I hope you enjoy it!
This time last year I had been fortunate enough to be invited by Animas to their Bloggers’ summit in Barcelona where I met a truly inspirational bunch of T1 bloggers & patient advocates from across the world who welcomed this squib into their fold & gave me tremendous optimism about my daughter’s future.
Fast forward a year & I once again was lucky enough to be invited back for the 3rd Animas European Bloggers’ Conference. Once more, the delegates welcomed this squib as an equal & we settled into a full day’s discussion as old friends, ready to support & learn from one another.
Kerri Sparling organised an excellent programme of events, kicking off the day talking about two projects that were very close to her heart.
The first project, as a mother, was one that held particular resonance with me. I have long felt very fortunate that the happy chance of mine & my daughter’s birth place has ensured she has always had ready access to insulin & modern technologies to help manage her T1. Indeed, Pumplette also knows how fortunate she is to have unfettered access to insulin wherever & whenever she needs it.
Which is why I am so moved by the Spare a Rose initiative. A simple idea making a massive impact to children who have no access to insulin if their families are unable to afford it. The concept is simple. On Valentine’s Day, rather than giving a dozen red roses, why not give 11 & donate the cost of a single rose to provide insulin to a child in the developing world for a month? Or, even better, donate the cost of an entire dozen roses & tell your valentine that they have enabled a child with T1 to have insulin for a whole year. One whole year of a child’s life for the cost of twelve blooms. I’ll let you ponder on that for a moment.
The other project Kerri spoke about was the #WalkWithD initiative. This idea appealed to me for it encourages us all to reach out beyond our online community in the #DOC & explain to others who aren’t touched by diabetes just what it means to live with, or close to, any form of diabetes. We spoke as a group at length about the need to support ALL those who live with diabetes, be it T1 or T2, so we can help stop the stigma attached to the word diabetes & support all those in our community. We have a much more powerful voice if we’re using it positively & supportively, rather than splintering into many teams & types, sniping about misunderstanding in the wider world, rather than concentrating on educating those who’s lives are not touched by diabetes & where some of the biggest ignorance is nurtured.
It’s that time of year again. The smell of autumn in the air & bushes heavy with blackberries. And butterflies. Lots & lots of butterflies. All sitting in the pit of my stomach, churning my insides over & over as we embrace the start of a new school year.
I hate it. The end of lovely, lazy summer days with my girls, replaced by the frantic pace of timetabled term life.
My desire to opt out of convention all together, embrace my inner hippy & home educate my daughters always reaches a crescendo at this point in the year.
Today this feeling has crashed over me like a tidal wave, divesting me of my usually cast iron grip on all the extras our family’s “back to school” routine entails.
It crept up on me as I waited at the pharmacy, clutching gallons of lucozade, waiting for the school’s supply of prescription items to be dispensed.
I felt that rush of resentment toward mine & my daughter’s peers who know nothing about the extra preparation that goes into our school year. They were all off enjoying their last day of freedom, not finalising care plans & hypo boxes & flash cards of “what to do….”. They don’t understand why I hold a metaphorical breath from the moment I entrust my child to the care of strangers in the morning, to the moment I catch sight of her holding court in a gaggle of girls & chatter, having managed to negotiate another day with adults who double check & question her every decision during that day, making her doubt her pretty flawless abilities.
This year, however, I have determined to ensure her teachers trust her judgement more. And make her doubt her’s less.
Maybe then, I can look forward to the start of a new academic year with excitement at all she will learn, and not fear it for all that could go wrong.
There isn’t a stage in her education that Pumplette hasn’t had T1. From her earliest foray into education at the age of 2 & a 1/2, there have always needed to be plans that shape her care & reflect her needs at each age.
These plans should ideally be shaped with one soul purpose in mind. Namely an equitable educational experience for the child with T1 to that of their peers. Sounds simple, doesn’t it? Well educated teachers working in conjunction with the parents of the child who, along with the child or young person with T1, are the experts in that one particular diagnosis. I would not ever presume that I would know how to take charge of another T1 child who wasn’t resident in our house. True, I am well versed in speaking the same language as these other children & their parents, but I don’t not know their individual ISF (insulin sensitivity factor). I don’t know how different activities will impact upon their bg management. So I would ask the questions, make note of the responses, and above all else, make a note of the parent’s number & how accomplished that child is & how much support or supervision he or she would need whilst in my charge.
But here’s the rub. I’ve found, in the course of Pumplette’s educational road, sometimes people not well versed with this most fickle of mistresses, will seek to presume they know much of how to treat it, from the merit of having another child with the same condition in their care.
This is not so!!
Granted, there are elements of similarity in the care required, but that does not make for an armchair expert. Or worse still, an interactive whiteboard expert!!
Our CWD have, until now, been at the mercy of educators who could dictate whether or not that child could participate in a residential trip. Where is the equality in educational experience in that scenario?
Mercifully, thanks to a change in the law in the UK, this should now all be a thing of the past. Diabetes UK “Make the Grade” campaign has produced excellent information for parents & teachers alike, so there can be no ambiguity when it comes to the expectations & levels of care a child with T1 should experience when they are away from home & in the charge of teachers. The packs set out clearly the responsibilities of all, so this September, make sure you’ve familiarised yourself with theses packs & used the care plan template, so that no child will ever again be excluded from any activity because they happen to have T1.
If you have ever had the privilege of teaching a child to read, you will truly understand the meaning of the word frustration. There will be times when you’re tempted to shelve the entire endeavour and opt for the seemingly more achievable task of nailing jelly to a wall. Or herding cats. But if you persevere, in front of your eyes, like a butterfly from a chrysalis, emerges a literate being. One who is able to decipher the written word & instructions that surround us in our daily lives. If you’ve ever tried to teach more than one child to read, you will know that there isn’t one, single, fool proof way to teach another being to read. Annoyingly, the teaching will need to be altered & nuanced for the individual child. You’ll be required to identify this & adapt accordingly. This is not always easy or straightforward. The results may not always be consistent. Not every child will become an avid reader. But every child, in order to fulfil their own potential in their world, will need to read.
What does this have to do with T1 I hear you ask? Well for me, helping my daughter to understand & manage her T1 is a lot like teaching her to read. Initially I needed to do everything for her but would explain to her infant self what Mama was doing & why. Akin to reading stories to a small, illiterate child. You hope to engage & encourage them in their independent desire to discover how to read for themselves. As she grew & gained more dexterity she mastered the art of bg checks in her second year. She also learned how to convey when she was hypo by articulating it as feeling wobbly. The Dr Seuss of the reading world. As she grew she learned how to operate her pump her understanding of why she needed insulin began to increase – food would be greeted with an “Ohhhh. Yummy.” & then a “How much insulin do I need for this?” This was the start of her “reading” longer books, with stories & plots to follow. She’s now exploring the library of her diabetes & trying out new things for herself. Her very own journey of discovery through a vast array of constantly changing literature – advise that was once held as gospel & the only way to manage T1 is slowly altering. The dictates from some HCPs are gradually becoming fewer as a new generation of professionals take up senior posts with their own appreciation of the complex mistress T1 can be. No one answer right for all. The agenda & assistance offered needs to be tailored to each individual patient. Just as it was when we learned to read. For the most successful readers amongst us were lucky enough to have a teacher who recognised our needs & reacted to them.
I have blogged in the past about the importance of ensuring a child is respected and considered in every consultation, regardless of age or level of understanding. This is about the child. Not the consultant. Or the specialist nurse. Or the dietician. And most importantly, not all about the parent. As the parent in that consultation it is my responsibility to ensure that my child’s voice is heard and her needs are addressed. If I have concerns or need support then as the adult, I have the opportunity to contact the DSN by phone or email at another time when she is not present. In clinic, it is paramount that her issues are addressed and it is a collective responsibility of all the adults present to facilitate this and not conduct a consultation over her head. This is not an easy thing to do. And I will confess to not always managing to achieve these standards. But, I do have an aim and most of the time it is reached.
I am aware that this may not be a popular view. All too often, and for very understandable reasons, the line between patient and parent becomes blurred as the exhausted, sleep deprived parent seeks solutions to alleviate some of their onerous burden. Equally, I know of consultants who will address the parents/carers in the main, whilst the reason for the meeting sits quietly amidst all the noise, totally lost and forgotten in the malai.
In truth, the responsibility of parents & those charged with caring for children & young people with T1 is to ensure they are fully literate when they embark on their independent journeys. Just as I was the only voice for my daughter before she learned to speak, I now act as amplifier. As she becomes more & more articulate she needs less amplification – she’s become more fluent in her reading. I no longer need to sit at her side to hear her read aloud. I now support her in her independent choices & provide guidance instead for questions posed, whilst hopefully equipping her with the skills to go out & seek the answers she desires.
For once literate, there is nothing that cannot be discovered.
Pumplette has just had her 10th annual review at the tender age of 11. She was thrilled with the news she wouldn’t have to pee in a pot this time as the clinic are now only screening kidneys from the age of 12, so she has but a year’s reprieve! Blood pressure check was a pain as it required stillness for all of a minute & consequently it was 4th time lucky when we finally got a plausible result from the machine!! Phlebotomists were greeted like old friends & she contentedly chatted away whilst the blood ninja drained an armful!!
Then came the chat with her consultant. Pumplette filled her in on all her news & there may even have been talk of T1 too, but that was fleeting & quickly dismissed by the 11yr old who had her own ideas about exactly which direction this discussion should take.
We left the clinic with Pumplette in good spirits & returned home to get on with the end of the school year, barely registering that we’d need to contact clinic a week later to collect the HbA1c result.
Fast forward two weeks & I realised we hadn’t contacted the clinic to get the results. Her consultant had made a big deal out of the fact that her last HbA1c had been in the “non-diabetic” range – showing Pumplette the nice black number on a computer chart after a decade of red recordings. In our clinic, non diabetic range is class as below 6.0 in old money & her last result had been 5.9 or 41 for the bilingual amongst you! I felt rather uneasy about the fuss being made – had she worked hard to achieve these results? Yes. Had it been easier than the previous decade to obtain these results? No! And the decade of data in red was hardly shabby………
Results of a tiny, pumping toddler
theunderstudypancreas.files.wordpress.com/2014/07/20140729-123106-45066407.jpg”>Results of a small, speechless baby
So it was with mixed emotions I waited for the DSN to access the relevant records & report back that, last quarter was once again, 5.9 or 41.
Now this is a fabulous thing, right? No debilitating hypos, no massive fluctuations in bg levels, and above all a child who is clearly showing a great ability to handle pressures of being 11 & managing T1 using the additional kit we fund to help her. Namely her skilful interpretation of her cgm & it’s data. I know of T1s & parents of CWDs who’d crawl over broken glass for results like this. And I’m unbelievably happy & proud of the lass. But my fear is the extra pressure this may now impose upon her from the subliminal messages she receives from the black vs red numbers at clinic, to the jubilant dancing & congratulations that occur when she reports her result to family & friends.
Am I being a party pooper? Probably. Should I let her enjoy her triumphant moments? Definitely. But when telling her how amazing she is & how well she has done, I was also at pains to point out how tricky this all is. That it won’t be realistic to believe she can always hold steady or reduce her results. Because just as we do our upmost to avoid crashing hypos, I’d like to think I can help support & shape a child who’s savvy enough to understand what a fickle mistress T1 can be & that the triumphs are spectacular but the disappointments needn’t derail her gig or send her into cataclysms of despair! They’ll be treated with the contempt they deserve & the ability to see the bigger picture for what it is – a full, happy life being lived whilst placating the uninvited guest at all times.
And so whatever the result, red or black, we will celebrate the fact that she doesn’t allow anything to hold her back. For that is her greatest achievement of all!!!