Why did the insulin die in my pancreas?

After a wholesome, LOW GI, vitamin packed evening meal, Lance is in complete heaven.

It isn’t too long,however, ( I’ve timed it to be about 55 minutes later,) where he starts shuffling from one foot to the other, clearing his throat and gravitating around the kitchen like a blowfly at a BBQ.

Now I think that I’ve established what the nervousness is about. I put him out of his misery, and asked, “You’re

hungry aren’t you sweetie?”

His eyes looked down and nodded his head.

He knows that my entire day is devoted to caring for him and Diabetes, and it pains him to think of my having to resume my place in the kitchen to make him a snack. He has compassion and consideration well beyond his years.

We have tried the water crackers/low fat cheese/gherkins combo. (Not enough carbs.)

We have tried Le Rice- a dairy snack that I heat in a bowl and tell him it’s rice pudding. It’s made using short white rice of course, so it just doesn’t fill him up.

Just like that,an epiphany came to me.

I had a Fruit Bowl that looked highly enticing and very Queenslandish, with a Pineapple. spotless yellow bananas, mangoes and a smattering of grapes. My friend, Fructose!

Then I began looking in the fridge. Low fat milk. Check. Low fat and sugar free ice-cream, Check. Almond meal for extra nutrients. Weird, but check. Frozen cup sizes of fat free yogurt. Wow baby, CHECK!

I reached up high for my blender and started chopping up portions of fruit. Depending on what I have, I get uber creative, and make Watermelon, Raspberries and rabutan blend. Mostly though, he has one large banana, 1 medium mango, and 12 strawberries. (And FYI, guy at my local fruit shop, I checked my VERY comprehensive notes from one of Queensland’s BEST dieticians.) Strawberries are NOT loaded with sugar, they are in fact, jam packed with air. So for all you who have been fed the line..”Strawberries are diabetic sin food,” start eating 12 a day to make up for all the times you have missed out. A fantastic source of iron for anybody, but especially for growing bodies!!

With a splash of milk, a scoop of ice-cream and yogurt, a sprinkle of almond meal, and my fruit all elegantly placed in the blender, I turned it on. I forgot one ingredient. Ice cubes. Nothing worse than warm-ish milk drinks. Placed them in as well. It sounded like I was trying to destroy something for a minute or so, until it became a smooth, yellow batter that was more smoothie than milkshake,tipped it into an enticing glass with the bendy straw. All that was missing was a tropical umbrella.

I asked Lance to sit at the table and be my taste tester for a new summer drink. If I would have said, this is crammed with fruit and you will love it, we would still be battling out the pros and cons of why he should be allowed all of these ingredients together. I’ve had to resort to almost fully fledged lies to keep my kid out of hospital.

“So? What do you think?” I hid my anxiety well, and acted as nonchalantly as possible.

“Kate, this is the BEST, the most SUBLIME, the most TORTUROUS -TO-MY-TASTEBUDS DRINK I HAVE EVER TASTED!!! Who is it for, anyway? he eagerly asked.

“Well..it was going to be for the neighbour-she needs some cheering up, but on second thoughts, I think she is allergic to mango. You want it?”

He sucked it back and made some wonderful slurping sounds or sheer enjoyment, whilst I began calculating in my head if I may have overdone it. We would soon see. One hour until bedtime.

He took the cup to the sink, tossed the straw in the bin, and lay on the sofa, moaning and nursing his very full belly. He made a few trips to the toilet, and brushed his teeth. If I saw a 22mmol/L I didn’t know what I was going to do. Kicking and Screaming briefly came to mind.

Lance initiated the testing, and counted backwards as the strip did it’s job.

I looked at his eyes and couldn’t read his reaction.

“Is it a bit high sweetie?” I had succumbed to defeat.

” Think I better wash my hands and try again, actually..” TRY AGAIN???

He emerged from the bathroom with gleaming hands all germ free. He chose his ring finger this time, and his lancet device released a perfect. bulbous drop of the finest haemoglobin.

12.2mmol/L?

The first test- 12.5 mmol/L.

For the first time in months, Lance went to bed without feeling ravenous. The ingredients in the smoothie worked well with his insulin, his 2am reading popping up at a remarkable 7.7mmol/L. Just what it should be.

Since that Holy Day when the Smoothie was born, Lance inhales one every night, about an hour before bed.

In this photo, Lance is halfway through his miracle drink.

Diabetes is like that really annoying 2000 piece puzzle you have been tirelessly working on, only to discover that there is one piece missing. If you are lucky enough to find it, there is that momentary jubilation. Some people get excited knowing that David Beckham is in Australia. ( OK, I was a little bit as well.) However, finding that puzzle piece makes your night time and sleep so less worrisome and fearful. As I watch my son sleep, and do another test at 4.25am, I am overjoyed to discover that he is 6.6mmol/L. He is breathing solidly, he has cherry cheer cheeks and his perfect, plump lips are blemish free. He really is a cherub. And a cherub with amazing blood sugar levels!!!!

Today, Lance needed “supplies.”

After absurd amounts of finger pricking in recent times, I needed to pick up a box of 100 Accu-chek Soft Clix Lancets.

10 pricks a day at $15.50 a box of 100 works out to nothing more than a sheer nuisance. Many people ask me why I test so much. It’s the only way I truly KNOW what is going on in my son’s body. Blood sugar control between 5 and 10mmol/L also has been proven to halt complications. So that’s what we aim for.

I also needed to get Novo Nordisk Needles for Lance’s insulin pens. They screw onto the top of the pen, and are intended for one use only. The provide a very accurate delivery of insulin. As Lance is still little, (even though he told me that I wasn’t allowed to call him that now that he is 7 and all. The most beautiful part is that without intention, my face obviously showed glimpses of hurt. He quickly recanted and said: ” Well, you can still call me that. I guess I am your little boy still, so it makes sense.”

I digress.

As Lance is still little, he is able to get away with having a six millimetre needle inserted into his stomach, which in reality is miniscule and not so visually disturbing for him.

The NDSS allow you to take one box of 100 home per visit to an affiliated pharmacy.

This means that we are regular visitors, collecting more insulin pen needles. Sigh. When you account for at least 4 a day, you don’t even see out the month without having to fill out paperwork and get a new box. Still, considering they are free, I dare not complain.

In this photo, Lance’s tiny hands hold the equipment that will “lance” his fingers up to 10 times a day, and penetrate his stomach so that insulin can be injected at least 4 times a day. This equipment looks innocent enough, however when I look at his fingertips and injection site on his stomach, I realise that without them, and without the NDSS Government Scheme, Lance would not be alive.

Diabetes always requires a huge monetary strain just when you DON’T need it. My Grocery bill has doubled because of the introduction of Gluten Free foods. Lots of people ignore their diabetes and complications because they simply can’t afford the medical expense. Not to mention how the 140 000 Type 1 Diabetics affects the economy of Australia. Not only is it deadly, but it is a very expensive “lifestyle” to maintain. The Federal Government does take this into consideration, and I am so grateful for getting insulins that retail at $500 for $5. However, Insulin is not a cure.

Dear Readers,

I received this letter today and I decided that the many experts that deal with Type 1 everyday would be best to offer advice and support. As I am in Australia, and the writer of this story is in Florida, it is difficult for me to provide support locations. I would appreciate it if you could offer some advice, or even some words of encouragement. I remember this time well, and I feel immensely for this poor guy. I hope that he gets some comfort and support from us old-timers!! 

Hi Kate

My wife has been reading your website for three days now, between uncontrollable outbursts of rage and upset. You see, we live in  small town near Florida, and our three-year-old son JJ had been sick for weeks. I have 3 members of my family who have diabetes. My sister has Type 2, My Mother has Type 1 and her father (my Grandfather) has Type 1 too.

I knew JJ was sick with more than just a virus. His Mom, Penny kept assuring me that it was something that everyone at daycare has been coming down with. I had seen these symptoms before though. JJ was desperate for drink and hollering for any liquid he could find. He was even drinking his own bathwater. I told Penny that JJ might have Diabetes, and that we should get him looked over. She told me I was being overprotective and worrying too much.

I went to work one day and got a call from Penny saying that JJ had not stopped crying all day long. When I arrived home, they were both crying and JJ was lying in his playpen. His eyes were open, but he wasn’t moving too good. I picked him up and he was all floppy-like. I rang 911 and told them about what was happening to JJ, but I had just gotten through all the information when Penny stood up in a rage and hung up the phone. She ripped the whole connection out of the wall. I had to beg and plead with her to come with me to take JJ to the hospital, as he had gone to sleep in my arms, she said he looked better, but he was twitching a lot, too.

I ended up collecting JJ’s Health Records and some diapers and clothes and took him to the Hospital. He couldn’t sit up in his car seat without drooping down, so I lay him on the front seat of the car and swaddled him with blankets. When I got to the hospital, the head nurse took just one look at him and called for the Emergency Team. They took him from my arms and that was that. I couldn’t even call his mother because she had ripped the phone out of the wall. I rang my Mom though, and she was on a plane within hours.

JJ had a condition called DKA and was actually almost comatose when he was taken from me. His sugars were in the 400 levels, his potassium levels were low and he also had some other anti fungal problems as well. He is not very happy about the injections and fingersticks that he has to have, but, hell, neither would I!! I think it will be good for my Mom to spend some time with him.

Meanwhile, Penny will not accept the diagnosis. The only thing she will do is read diabetes blogs and yours seems to be her favorite. She will not give JJ his injections, she makes him cry because she starts squealing like a pig just before he is to receive his insulin shot, which makes things very difficult.

To make things worse, she says that it is my “tainted” genes that have JJ in this mess anyway!! That hurts me some, because my mom and her daddy have had a tough time of things, but they have looked fear in they eye on every occasion when the get really sick with complications.

I was wondering if you could please reply on your website, so that Penny will stop blaming me and start taking on some responsiblities as a mother should. Despite having diabetes in my family, I know nothing about it and I am learning through the likes of you. Do you think Penny will come to her senses and be the mother she once was? I am too scared to return to work in case she “does” something. I just don’t know what to do here, Kate.

Yours Respectfully,

Johnathon

Dear  Johnathon

I really identify with a LOT of the feelings you are going through. Good on you for looking out for JJ’s future and making an attempt to find out information!!

Firstly, I need to let you know that I am not a doctor or a medical professional of any kind, so I am giving you advice as a fellow parent with a diabetic child. It’s up to you what you choose to do with it.

I have a few comments to make. Firstly, a child just diagnosed with Type 1 Diabetes has a body that thrives on fungal infections, so thrush in the mouth or in the diaper area is totally common. JJ would have been put on an intravenous drip, and he would have been given potassium through there. It would have made him feel a lot better too. DKA is also common in a child with very high blood sugar levels. You probably had to spend at least a week in hospital with him, the staff were trying to ensure that his body was well on the way to getting rid of all of that excess sugar.

It’s good for you that you have some experience with Type 1 Diabetes. You can  take care of Penny, as well as provide care and administer JJ with his shots. When Lance was diagnosed, there was no time for grief. It was expected of my husband and I that our old life was over, and this was the way things were from now on. In retrospect, it was probably the best approach of dealing with Type1. As much as it hurts, a lot of aspects of your life will change. Being in the States, you are at a tremendous advantage. May I suggest joining TUDiabetes( free membership online and very supportive) and JDRF, they will attend to JJ’s requirements and help to get him used to injections and finger pricks, and he will soon learn that he is not alone. The American Diabetes Association is probably your next best bet. There are also numerous Diabetes Bloggers (look in my BlogRoll,) there are mainly fellow parents of young diabetic children who write on a regular basis.

Your wife is experiencing many emotions that I have been through. I knew that my son had Type 1 Diabetes before he was diagnosed..that didn’t mean to say that it was easy to deal with!! Having a child who “out of the blue” develops these symptoms is really difficult to comprehend. You need to let her know that without the utmost care with JJ’s doses and food intake, that his life is in danger, whilst also assuring her that JJ can lead a totally normal life, as long as he has full support from his parents.  You need to get back to work, but it’s no use going back to work if you are worried about BOTH of them!! I’m sure that you will find some support for Penny as soon as you make your first phone call.

Lastly, although you have a history of Type1 Diabetes in your immediate family, this does not mean that it is “your fault” that JJ has Type 1 Diabetes. Unlike most cases of Type 2 Diabetes, nothing your son did or nothing that you or Penny did brought on his diabetes. It is an auto-immune disease, and it no fault of yours that your son has Type 1 Diabetes. It was going to happen whether you liked it or not.

I am sure some of my readers who are from the US will be able to guide you in the right directions. I wish you were closer so that I give you the names of support centres/paediatric endocronogists. You will have to do a lot of reading about how to best care for JJ. JDRF will be able to help you with that. A good Diabetes Educator will be able to help the whole family also.

I wish you the very best of luck in these vulnerable days. I won’t lie, they are tough. Your stress levels are probably through the roof. The best part is that slowly, things do get better. When you find a good Diabetes Care Team, they will overload you with fantastic advice and how to manage when things are tough.

You have made a fantastic first step in contacting me. For now, the most important things you need to do is ensure that JJ receives his insulin everyday, and that he is eating foods that are rich in carbohydrates. Keeping a journal of JJ’s fingerpricks and readings will also help you to quickly establish a pattern, and will also help your doctor know if insulins need adjusting. Your little boy’s body has been through a major crisis, it is important that he is fed well and given  his insulin everyday. If you can concentrate on that for now, the rest should make sense when you speak to your doctors.

I wish you the very best of luck, and my thoughts are with you all. Please feel free to contact me again if you need to regarding anything, no matter how insignificant it seems. It is very important that you join TUDiabetes for online support and get JJ a JDRF Membership.Lastly, take little steps at a time. Every good reading is a positive, every meal completed offer praise. He is still your son, but he is going to need some  TLC whilst he is so young. My son, who is 7, copes extraordinarily with his condition. It is all he knows. He knows that if he is good to it, that it will leave him alone (most of the time.)

Best of Luck

Kate and Lance

I hate honey.

Don’t just dislike it, but HATE it.

I just saw some in the pantry, and I had some really, really bad memories.

I had memories of My Mum holding me down, rubbing honey into my cheeks! What a strange memory to have!

I asked her why, and she said that sometimes, when I am so hypo that I can’t eat anything, that out of desperation she has rubbed it into my gums. She said that often I have spat it at her too. Sorry Mum.

The thing about honey, as Mum explained, is that it can be absorbed quickly when rubbed into the gums and pink parts in your mouth and therefore make a diabetic feel a LOT better, and prevent them from having the glucagon needle.

So I guess it is a good thing to have in the pantry.

I have memories of Mum having globs of honey in her long red hair. And she had even had my handmarks slapped onto her face outlined with honey.

I asked Mum if she liked honey, and she said that she doesn’t care for it much these days, either.

But, we both think that it is an excellent idea for parents of diabetic kids’ to have honey in their hypo treatment kit. It sure is messy, but it’s better than a trip to hospital!

Sometimes life is busy and simetimes it’s slow.

Well, yesterday, I turned 7, and I had SUCH a good day! i forgot to mention that I heped my Mum make the cake part of my birthday cake, all by myself!!! It was a gluten-free cake, so that I could acually enjoy it without getting tummy pains! I broke the eggs without making a disaster, and mixed the mixture perfectly. Mum said I did a professional job!

She did the best part of it though. She covered it in whipped cream and blueberries. I chose blueberries because they are full of antioxidants. I like to eat yummy foods, but after having diabetes for so long, I know that it’s better to have something that is healthy and delicious rather than just straight out chocolate on chocolate. My tummy has grown to like light and healthy things inside of it.

It was so yummy that I took a piece over to my neighbour’s house! She is a doctor so she knows how important is eat well and look after my body!

Today, I spent some of my birthday money on Yugi-oh cards, and Mum spent some of her money on Storage packs for me to keep them in! I got such a rare card that it didn’t even have a name!!!

We also got a new Prime Minister tonight! We still have Mr Macfarlane, our local Federal MP who has promised to remember me when funding arises in Parliament for medical research. It’s a bit sad that I got Christmas Cards from Mr Howard, and even a letter, and now I won’t. However, Kate and I are going to start writing to our new Prime Minister, The Hon Kevin Rudd MP on Monday. Mum wants it so whenever he sees an envelope from us that he will know it from “those” people in Queensland!!

I also have had hypos yesterday and today and not felt them at all. Chino alerted one when we were in the car which was great! I think it’s because I’m really excited about turning 7. Also…it WON’T stop raining..and we shouldn’t complain about the rain because we are in the worst drought in Australia’s history, but it means that Mum can’t put my trampoline together, therefore I can’t jump on i!!

PM Rudd was in agreeance to give some funding to our insulin pump grant, but we still don’t know how much.

Lance has alway suffered from sore legs and leg pain as a result of being a diabetic.

The pain usually escalates when his blood sugar is in the 20mmol/L area.

I guess because his blood is pumping through his legs as a toffee-like concoction.

Regardless, he is flattened by the the leg pain, until extra insulin is given and the water flushing commences.

In this picture, Lance is miserable with the “ache.”  It is relentless, no medications assist. This is a common position for us, his leg in my lap, whilst my hands kneed at his knees, his thighs, his calves, his ankles, his toes and his feet. These days he doesn’t even need to tell me they are sore, he simply sits beside me and I commence rubbing, without a second thought.

Diabetes isn’t just about insulin therapy, there are lots of  symptoms that accompany it. Headaches and light sensitivity when low, pains in the stomach and leg pain when high. These are just a few that I can think of, but they are Lance’s top 4 symptoms.

A listless little boy lying beside me with either or both legs in my lap is a common scenario. Most often, after consuming  food. His legs ache during the night, the only thing that allieviates the pain is to lower his blood sugar, (which is not always the ideal or  SAFE thing to,not in the middle of the night, anyway.) Massage is the only thing that provides some relief.

Diabetes affects the entire body in one form or another, maybe not now, but after many years, is would be very easily said that”Diabetes has ravaged my body.”  At 7 years of age, it is cruel that this is already starting. Lance needs a cure, and if not a cure, a pump to allieviate the see-saw -like up and downs.

Insulin in not a cure.

When I was preparing my son’s birthday dinner, I decided to include his insulin and glucometer on the table as the secondary “guest of honour.”

Despite my constant rantings and hatred for Diabetes, it occurred to me that without insulin, Lance WOULDN’T be having a birthday. At all.

So even though there were only three people dining and celebrating, I gave it its own special position at the table. I am so thankful to it for giving my son the chance to survive, amongst all of the terrible contradictions that will always be involved with living with Diabetes.

In this photo, Lance’s two insulin pens, Novorapid (Rapid Acting Insulin,) Levemir ( Long Acting Insulin) and the Accu-Chek Integra Glucometer are given the honour of sitting with us during our celebratory meal- as they are the three essential tools that allow my son to keep having birthdays.

Diabetes is always there, even on a little boys’ birthday. Without the technology of man-made insulin, and the glucometer, Lance would not be celebrating this day. For this I am extremely grateful, expecially to companies like Novo Nordisk who make it possible for Lance to have insulins that are tailored to his diabetic needs. Injected or Pumped Insulin is able to mimic what a functioning pancreas does…but very poorly in comparison. The elite precision of a how the body eliminates glucose from the blood is a superior demonstration of what happens without our control within us. However, in a diabetic, the entire day is spent measuring, calculating, observing, balancing, making decisions. As much as genetically-engineered insulin is a lifesaver and a lifegiver….

Insulin is not a cure.

I woke up Friday morning and I thought my birthday was over!

I had had a dream that it was my birthday, and my Mum didn’t wrap up any of the presents, and they were all different types of guns and swords!!

She also showed me on the calendar that it was STILL my birthday!

WOW! I’m 7. SEVEN!!!

Do you want to know what I got?

Well, firstly, Mum reached up on tippy toe into her tallest cupboard and lifted out seven wrapped-up boxes.

I got:

1. A tin of Yugi-oh cards

2. Some really funky clothes

3. An art kit that will help me to become a better drawer

4. A Transformers booklight, calulator and pen

5. Some Mensa books and activities, and some new chapter books. ( One of them is “Charlotte’s Web”)

6. A kit that will teach me how to make cool rings for my Mum.

7. Some hand weights that will give me little mucscles in my arms, and I can use them as part of my yoga rountine.

Then, Mum told me to go outside and take Chino to the toilet. I opened the back door, an sitting there, was the HUGEST trampaline!!!! (it never rains here, and now that it’s my birthday, it hasn’t stopped, so I haven’t even got to try it out yet, and Mum hasn’t even been able to put it together because it’s too wet! But at least I’ve GOT one.

I also got $5 in a card from my Mum, $6 from my neighbour in a card- ( I am her mail boy,) $20 from my Pop and Ma, as well as some Spiderman 3 PJS, a punching bag and gloves from my Grandad, a $30 cheque from my cousin, Christoph, in Sydney, I got an electric toothbrush and cool toothpaste from my Mum’s big sister, oh and a beach towel too. A special email from my Aunty Lizzie and James in Tasmania, and I did receive and early birthday present at the beginning of November from Uncle Dan. It was all about kittens which he and I both love. He sent me an email as well. He is such a sweethearted boy. Even his handwriting tells me that he is kind. He really cares about me a lot too, I can tell. And a sms from my friend Jell.

Mum asked me what I wanted for my birthday dinner, and I decided on Nachos.

The Birthday Cake was for dessert. Mum has photos of it for the next posts.

This is how my Mum decorated the table for my dinner.

So I’ll never be six again.

It’s fun being seven now, I feel a little bit more important. My endocrinologist told me that I could have whatever I wanted for my birthday, so I had fruit loops for breakfast (I had never tasted them before!!!!) and three pieces of birthday cake for dessert, and a few chocolates. Strangely enough, I had 3 hypos yesterday! Not bad ones where I was sick, but just low readings. So to all of the people who have given me a bad look when I’ve had a piece of cake…(I wanted to write “Eat my shorts” but Mum wouldn’t let me…)

I am on tenderhooks at the moment.

I am waiting for some delivery guys to bring over Lance’s 7th birthday present.

(It’s a huge, super bouncy trampoline, by the way.. perfect for knocking down those pesky highs. 50 jumps on that and a litre of water and we are back in the land of the free!)

Big Problem #1. Lance is home with me and he has a nose that is finely tuned for sniffing out surprises. I can nearly guarantee that he will find out about it before tomorrow.

Big Problem #2. I have never put a trampoline together before. I’m ashamed to say that I’m a bit of a girly girl in that respect…” So is it the screwdriver…or the shifter that I need here?” I mean that in all seriousness. For all I know, I mightn’t need either..

Big Problem #3. There are huge, ominous, buldging black clouds hovering over my house. The weather forecast also predicted “storms and rain” tomorrow.

 So…the chances are high that these guys will show up at 5pm. I will have one hour of daylight left, and insulin and dinner to attend to. And I just KNOW that Lance is not going to want to go to bed early tonight. Maybe I’ll have to pull one of those parental urban myths out of the closet…

“Oh..it is a known fact that kids that don’t go to sleep at least by 9pm on their birthday eve will not receive any cheques or cash from long distance relatives. Australia Post made a deal with parents in the 70’s. No sleep, no mula.”

He may have fallen for it a few years ago…but not now. He would think that, no matter how well delivered, that this information had no reason or sense to it. I can’t outsmart him anymore, dammit!!!

So..I will just sit and wait. I can imagine myself sitting amongst a pile of bubble wrap, instructions, cardboard and metal things called tools at midnight tonight.

Added to all of this, is that I am positively the WORST ever surprise keeper. I love giving presents, and knowing how much Lance WANTS this trampoline makes me want to tell him yesterday!

2.45pm. Arg. Clouds. Arg. Rumbling thunder.ARG!!!

Knowing my son’s beautiful heart, however, he would be happy just knowing that there is a picture of a trampoline on a box, that has been deigned his.

Seven years ago, I was in the worst agony of my life. I was expecting to have a baby born on the 22.11.00. However, Lance arrived 3 hours into the 23 day of November. Looking back on that day, I break out into a mild sweat, recalling my panic and the hospital staffs’ calm and breezy approach to my distress.

However, as I peek around the corner and see one very tall and handsome boy, who is positively radiant as he plays tug-of-war with his whippet, I couldn’t think of a better way to spend a day. I waited so long to meet him, and when I finally did, it was like I’d known him for years. As soon as our eyes locked, his newborn screetches stopped.

We are so blissfully happy in the grand scheme of things. We have each other, a cosy home, loving family, a fantastic pet. Diabetes seems so insignificant today. I am empowered knowing that he was born without islet cell mass suicide.

Stay tuned for the birthday cake pictures! Lance is positively salivating at the thought of devouring mouthfuls of whipped cream and moist cake. His “ cake eating poses” are almost too salacious to put on the internet. Cake Lust is something that is sublime to witness.

 Now…where the heck is that truck??

I met a boy ten years ago.

He was a individual.

He was a gifted wordsmith.

He had a sharp genious streak.

He was a wannabe punk.

He was 23 years old, and had already been through enough chronic pain to last a lifetime.

He had a a spine that was never meant to be straight and  he was often huddled over in sheer agony.

I didn’t know if I would ever see him again.

10 years later, we found each other unexpectedly again.

This time, I knew a little about pain.

I had a heart that was still swollen with a huge gash caused by the unexpected diagnosis of my son’s condition.

His pain was etched into his face. A smile was a rarity.

 We spent a few months together where we shared some quality time that was so precious, and so innocent.

He loved my son, and was crueled at the thought of a child having to go through hisdaily regime of injections and fingerpricks.

He showed me kindness and tenderness that I so longed for.

Then he was gone again.

The last time I heard from him,  he was desperately lonely.

He had just recovered from surgery, and was spending time with his family.

I was in Sydney the last time I heard his voice. He called me at 7.45am.  I could tell how much he needed a friend.

It pained me that I was so far away from him, and that I couldn’t see him, or listen to him.

His sister called me yesterday. My Joely’s pain was gone. He never has to suffer again. His heart stopped in his sleep. Simple as that. Ba boom Ba boom..then nothing.

His funeral is on Lance’s birthday. A day when I am supposed to be celebrating the gift of life, and a life that we have fought so hard to keep.

I have been invited to his service, which I have decided I will be attending.

I need to say one last goodbye.  I have a handful of emails, a page of his doodlings. and a snippet of footage from my wedding video to remember him by. I am overwhelmed with memories, however, of  the times when we would both laugh in an inappropriate part of a film.  He and I, speaking on my sofa, about what we do next in our lives. Even though his life ended so suddenly, he truly tried to make something of what remnants weren’t saturated with pain and despair.

Chronic illness is cruel and it is even worse when a young person has to map out a world for themselves with “it” always surrounding them.

I could never forget you Joel, you showed me how to have fun even with a chronic diease interwoven into my life. 

I have shared some really huge moments of my life with you.

It was an honour. Amongst copious tears, I find myself laughing intermittedly about how you always managed to spill almost every drink I ever gave you. It will always be that way now. Everytime I think of you or miss you, I won’t have time to feel sad for too long, as a classic memory will supercede my heartache and leave me in peels of laughter.

I have said this phrase many times in my life, but I have never meant it more when I say:

REST in peace.

That I never have to see you with a walking stick or bedridden or  overcome with agony is a fair exchange for never seeing  you again.

Love, Katey.