Nativity Play from Zee Hay on Vimeo.

Graham researched thirst and hydration and concluded that most don’t drink enough and that our 4-year-old son was now starting to drink more liquids in line with acceptable levels. Nothing excessive. Phew!

Since Ali was drinking more he was urinating more. Accidents on the way to the toilet were a chore but he always waited till the last minute.  Boys will be boys. He never wet himself at nursery or at night in bed!

A month before 11/11 Ali had a spectacular tantrum while on holiday. We’d been spoiling him with more than the usual amount of sweet treats and Graham’s dad mentioned that sugar could be the culprit. Yes, possibly, best we cut back.

Ali seemed a little leaner but we assured ourselves that he was stretching and growing, his appetite would return to normal as soon as this ‘phase’ passed.

Two nights before a weekend away to visit his grandparents, Ali wets the bed around midnight. After the linen is changed we wake the next morning to find he’d done it again.  Soaked through pyjamas, sheets and on to the mattress. Excessive! He seemed a little distressed about it too. Graham mentioned Diabetes again. After calling for an emergency appointment I was thinking along the lines of an infection during the 2-minute silence on Remembrance Day in the car.

At 1110 I was telling the GP that I’d like to rule out Diabetes and that whatever he has is probably nothing serious. We returned from the toilet with Ali’s urine sample and the boys continued to cause mayhem so when she told me the result I was a blank. I asked her to repeat herself and what does sugar in the urine mean? She explained the test strip, Ali’s urine had ketones matching the very last colour block.

I said the D word a whole different way before bursting into tears. Dr W nodded and I noticed her eyes shining a little too when she said we’d need to go to hospital and that I could call my husband. Ali was shocked that mummy was crying so I quickly pulled it together and held him tightly feeling an enormous amount of guilt along with the shock.

The parenting guilt played on repeat, shouting when he made those accidents and having to clean up after him and the extra laundry and all the times being so irritated that he needed yet more juice or there’d be a tantrum. And why oh why had we not made an appointment earlier even if his thirst was not quite so excessive?

We couldn’t break down, our son needed strength and it was scary enough for him to be going into hospital for the first time in his life. Graham rushed home from work where we ate pizza for lunch and tried our best to appear normal. I avoided looking into Graham’s teary eyes, we got busy packing the bags.

And so we left to hospital where we already knew what they’d say. It took a few hours, a few pricks, a few urine samples and one big blood draw before the Diabetic Specialist came to talk to us and confirm it.

Your son has Diabetes.

Type 1.

For Life!

So many questions and so little did the answers soothe.

Had I made an appointment earlier when Ali first showed signs and was there anything we could’ve done differently. No. He had ketones which would be treated with insulin, there didn’t appear to be any damage.  We had brought him in at the right time. As he has Type 1 Diabetes he would need insulin (injections), every day for the rest of his life.

Looking at Ali in the hospital you’d never say his blood sugar level was 38 mmol/L (target range is 4 to 8 mmol/L), he was playing with his brother in their usual rambunctious way.

We started our education about Type 1 and we are still learning about it every day. Sometimes we still can’t believe it. It didn’t matter that I avoided serious drugs during birth, delayed cutting of the cord, breastfed exclusively for 6 months and then for over a year after that, co-slept and bought all kinds of organic foodstuffs, restricted his sugar and salt intake and well all the rest. There is no formula for a truly healthy child.

If their pancreas stops making insulin there’s nothing you can do about it.

Nothing.

I pleaded for him to be released from hospital on the Friday and to start returning to a new normal, with 2 types of insulin and insulin pens, a blood glucose monitor, urine test strips, several needles, a sharps bin, a file to log results daily and a prescription for the other things we’ll need like a Glucagon kit etc.  

A week passed when I finally broke down, crying until my insides hurt.  Crying for our child who cannot communicate all he is feeling and understands so little but must accept that he cannot eat a certain something and that we need to pierce his skin with sharp needles whether he cooperates or not.
Crying about his outbursts;
‘I don’t want to have Diabetes anymore mummy’, and
‘Can I have my jab tomorrow instead’ and
‘I will give Rafi his injections when he turns 4’ and
‘I don’t want to eat anything, ever’ and
‘Do you and Daddy also have Diabetes? I don’t want to be the only one with Diabetes’ and
worse
‘It’s not fair’.
It’s not fair. But life’s not fair and Diabetes is not a death sentence.
It is a life sentence.

His thighs sometimes go a little blue and purple from the jabs but they fade. He’s quite good with finger pricks for his blood glucose checks, good days he gets 5 pricks, bad days he gets 15. We count his carbs for every meal and snack as his food intake has to closely match his insulin injections. We need to consider not only what he eats, but how much and when.  Hyper’s and Hypo’s still occur often but he’s not had more ketones or a seizure. The tantrums continue and sometimes we see a connection to his blood glucose levels. Sometimes we do good and get better at managing this disease and sometimes we lose our rag.

We’re grateful to the wonderful staff at Yorkhill Hospital and their excellent Diabetic Team who guide us through this stressful process.

We now know this disease is common, especially in Scotland, it can strike at anytime at any age, some babies have it so it’s not unusual that our 4 year old has it.

We now know that several medical teams all around the world are working on various cures and that perhaps in Ali’s lifetime they will find one.

We know he can live a normal life ‘managing’ his Type 1.

And yet…

Our hearts…

His Nibs turns 4! from Zee Hay on Vimeo.

For almost two years you slept in our room. We let you climb over to our bed from your cot-bed as you preferred sleeping between us. As you grew bigger and started to demand more space we knew it was time for the move to your own room. After 6 months in your own room you are still not used to sleeping on your own. Some nights you wake 4 or 5 times and other nights once or twice. You?

You see, last night I was making dinner, the oven was on and the glass door was piping hot. Ali, as is his want, was crawling around exploring. Unfortunately, as we live in an open plan home, it’s pretty difficult to keep him out the kitchen. His exploring usually leads him to the kitchen drawers, the washing machine, and occasionally the oven. A stern warning is usually enough to keep him away from the oven. Not last night. I turned my back for a couple of seconds to dish our dinner and I heard a cry from Ali.

He was standing up leaning both hands against the glass of the closed oven door screaming his head off, putting one palm on the other but not registering that he needed to drop to the floor to let go. I rushed to pick him up, and ran cold water over his palms but he was absolutely hysterical. I think he’d been leaning on the door for about 5 seconds. Maybe less. It seemed like a lifetime. The poor little man cried for an hour while we tried to immerse his hands in cold water. Zee cuddled and fed him but he wasn’t that thirsty. We gave him a bath and used a wee tupperware tub to put his hands in some cold water, but he was inconsolable. Even offering him the Pronto remote, the ultimate prize, had no affect. I knew then that he was really hurting. After various calls to friends that are GP’s we gave him calpol, medised and cuddled him to sleep. He was crying in his sleep for some time trying to settle.

Amazingly his night was not as hard as the night before. I guess the drugs really helped. We gave him more medised and ibuprofen at midnight, he woke at 0300 and then at 0645, but didn’t seem to be in pain. By 0720 he was restless to start his day. He seems fine now, though he does have a tiny little 5p sized blister on his palm. He was crawling around, quite content, when I left for work.

Things like this make you feel like the worlds worst father. I didn’t sleep well. Kept thinking about what happened, what I could have, should have, done to prevent it, or at least minimise the damage. Live and learn I guess.