Bittersweet Celebrations

This weekend we celebrated a year since my son was diagnosed with the autoimmune disease, Type 1 Diabetes, with his first ever Diaversary.

A year ago we finally surrendered to the subtle hints his eight year old body was giving us that he was in the very early stages of his pancreas giving up the fight. He had started wetting the bed in extreme amounts and sometimes twice or three times in one night. Other than looking slightly skinnier than normal, he didn’t have any other symptoms such as extreme thirst or tiredness that usually indicates Type 1 Diabetes. It was the beginning of the school year so I dismissed his symptoms as anxiety for a couple of weeks until I accepted that something else was going on.

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Will a couple of weeks before his diagnosis. He’d just completed a 5km run and was right into his running. On his first run back after his diagnosis, he had a hypo half way into the course and didn’t want to go back. I don’t blame him. 

I had grown up with my Mum having T1D, so I always felt I was on high alert. My gut knew he had diabetes about a week before we acted on it. I looked for alternatives because I know too well what life with this chronic disease is like and I desperately didn’t want that for my children, especially not for my son with a sensory processing disorder and anxiety.

I grew up listening to ignorant comments about the disease that is very different to Type 2 diabetes, but so often mistaken as the same thing. I didn’t want my son to have to defend himself the way I had to stand up for my mum, to have to constantly explain that he did nothing to be burdened with this. His body messed up, his pancreas died and there was nothing he, or anyone else could have done. Diet, exercise, lifestyle changes couldn’t stop his body attacking itself.

When he was sent to hospital to confirm his diagnosis, he was absolutely devastated. He too knew what it meant, and he fought every step of the way. He screamed with all the strength he had, he had to be held down by several adults to have his insulin injections, he swore like a sailor, and if fighting could have helped, he definitely would have won the battle. I promised him that God didn’t give us any battle we couldn’t handle, but I struggled to believe it myself and couldn’t see that this would ever be easy. On that first day I fought through tears to tell him that in a years time this would just be a part of our life, I promised that we would have a big party to celebrate getting through that year.

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He’s smiling like that because he was so proud of himself for having his cannula put in. 

So that is exactly what we did. After giving so much to this horrid disease, I refused to let it have this day. Rather than be a day of mourning the life he had that was taken away, his freedom and complicating everyday activities, and his life span statistically being reduced, we would celebrate.

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Will waiting to be discharged from hospital

We would celebrate all the battles won in the year. We would acknowledge over 1800 injections into his little belly, at least 2500 finger pricks to check his sugar levels, the two hospital stays, countless sleepless nights, being woken to eat when his sugar is low or to drink water and have an extra shot of insulin because his levels are too high.

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This is what the day after a rough night with diabetes looks like. Despite doing everything right, sometimes diabetes has other plans. There’s lots of interrupted sleep, lots!

We’d celebrate because, despite desperately wanting to, I didn’t hurt anyone when they told my beautiful boy that he could fix it with diet or exercise, or that diabetes isn’t a “big deal” because their uncle/aunty/cousin/whocares had diabetes and they just didn’t let it be a drama (and when I ask if they have Type 1 or 2 they never know and then I want to hurt them more).

Diabetes goes everywhere with us and creeps into every part of our life. Will cried on his birthday because he said he’d just like one day without it. I cried because I’d love that too.

Will’s diaversary had to be about him, so we made it all about his favourite things in the style of an Amazing Race, but without the race. We gave him clues for him to solve, then we set off on our adventure.

  1. Sydney– Will LOVES cities. I think it goes back to his Spiderman loving days, seeing New York and dreaming of the city life. Sydney is only just over an hour away, but we are campers so my children don’t really stay in hotels often. A stay in a HOTEL in SYDNEY was sure to blow his mind. screen-shot-2017-02-13-at-7-54-53-pm

He loved it! All his dreams came true, he went to bed in his fancy hotel bed watching football and feeling like a King.

2. Friends and Family– the second clue was all about the people who love Will and supported him through this year. Like the rest of the Amazing non-race, Will had no idea about any of this, and he felt so special to have people share the day with him.

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3. Basketball– Will is obsessed with two sports- Basketball and Rugby League. When we found out that his favourite team was playing on the night of his Diaversary, we knew we had to be there. He received the clue at the end of lunch and was extremely happy with the contents of that letter…

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We usually sit waaaaay up high in the nosebleed section of the stadium. But we splashed out and got seats close to the court. I roped in an old friend who works for Will’s favourite team, The Hawks, to see if he could arrange for a signed poster or something we could give Will. He went WAY beyond that and organised a signed jersey, and a meet and greet with Will’s favourite player at the end of the game. Will was speechless for most of the night. The Hawks had played so well and had just made it into the finals, so I would have been happy with a high five for Will considering the players probably should have been off celebrating with their team. But they called Will by name, congratulated him on being so brave and made a real old fuss of my brave boy. He was completely starstruck.

The players gave Will his final clue, which he read out to them. It was a little awkward because I’d forgotten how crazy long the last clue was. Whoops! But those amazing men all stood there and heard him slowly read through the short story. They made him feel so special and it was so amazing to see his role models giving him so much attention.

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4. Footy– our last stop was to see his favourite footy team, The Dragons, play right next door to the basketball. It was all meant to be, everything just happened to be on that weekend and made it very easy to spoil Will with all of his favourite things.

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After all of that, we slept very well that night.

It was so wonderful to have so many people acknowledge Will’s battle and celebrate his brave attitude to dealing with something as big and scary as diabetes. I’ve joined many support pages on Facebook, and while it has been helpful, it’s also really hard to see all the horrible stuff that goes with this disease. People die from this disease, they get very sick, they have other organs damaged by this disease. They have their lives interrupted every single day. They can do absolutely everything right, and for no particular reason they can see, things can go wrong. I try to be positive but all of that is whispering in the back of my mind all the time. I only want people to understand how dangerous it can be so that they take it seriously and realise it’s not as simple as it can be portrayed.

Despite all of that, I’m so glad that we chose to celebrate Will’s diaversary. As much as we tolerate diabetes, we’ll never be friends. We own that date now, February 11 belongs to Will and not to diabetes.

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One thought on “Bittersweet Celebrations

  1. hbsuefred says:

    The American actress Mary Tyler Moore also had Type 1 diabetes. She wasn’t diagnosed till she was an adult and starring in a popular and pioneering situation comedy on TV, the Dick Van Dyke Show. MTM went on to do many other fantastic and groundbreaking things in her life. She just passed away at the age of 80, and, while her friends reported in 2014 that she had heart and kidney problems and was nearly blind, she was able to live a “normal” life that was beyond fruitful until probably the last 5-7 years or so. Here is a link to an article describing how she lived with and what she did after receiving her diagnosis. http://abcnews.go.com/Health/mary-tyler-moore-proved-living-type-diabetes/story?id=45099935 I hope she and others like her will be a continuing inspiration for him, as it seems American kids with T1D were an inspiration for her.

    Like

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