Saturday 24 August
"We started to get things back to normal. Sam took Lydia shopping for food, whilst I set about a few errands with the boys. Shoes for Henry. Ed's supplies from the pharmacy. And the pillow we forgot at the hospital.
I nearly had a melt down as Ed had a slurp of Henry's full sugar Ribena without thinking, but I know we will figure things out I will get used to making sure everything is sugar free. Back home we prep dinner and the house for friends coming over later.
My heads all over - I went for a short run to try and clear it but it didn't help really. In the afternoon Ed wanted to see his friend who lives close, perhaps it's best if they stay around here. Ed wants them to go to Max's house - not sure I'm ready - hang on, life has to go on, he has to go out of my sight sometimes, as much as I want to I can't wrap him in bubble wrap, so I let him go, tooled with his phone and glucose tablets.
It was good having people over in the evening, it took our minds off it (intermittently), but my mind is tired.....luckily these are good friends and the evening doesn't take a lot of work. Over dinner I talked to my best mate about Formula 1.....I love it, he loves it - we always talk about anything an everything - but tonight I couldn't string a conversation together......my head was vacant. The girls talk about Ed starting high school and they promise their boys will look out for him.....that makes me cry a little.....humble tears......good friends.The kids have been great these last few days.....really great.....so we decided to treat them. Henry got new Blazers just like the big ones.......Lydia and Ed spent up in Topshop and Topman. Sunday shopping is good for right now.....not busy.....I really can't do busy now. We were in and out of town between injections but I did find myself checking Ed out at every given chance, looking for signs that something's not right.......Jesus I need to stop this, I can't live my life like this......but for now I can and will, kind of feels like survival at the minute.
We went to my in-laws for dinner and Ed shows them what he has to do.....he's so proficient with it already, like he's been doing it forever.....so matter of fact. But every time he sticks a needle into his young skin it makes me want to cry.....I know it will pass but it's hard.
Lazy morning....after breakfast we headed out for a walk.......we'll get an ice cream.....no wait we can't, Ed cant have it.......then the phone rang, it was the diabetic nurse checking how we are doing. Sam brings her upto date and let's her in on the 'ice cream gate' discussions. He's running around burning energy....if he's doing that, he can have an ice cream - right maybe he doesn't have to miss out on everything then! We had a nice afternoon, called at the pub on the way home - everything felt pretty normal. We bumped into some other friends and told the story again!
Invited to my parents today for dinner today, think people are looking out for us.....I'll take that, it's one less thing for us to think about. Mum's talking about the dinner she made, how she's not made sauces, not used salt. I try to tell her again its just about a healthy diet - that doesn't mean bland food only - she got upset saying she just wanted to get it right - I get why, it's hard for everyone right now, getting their heads around it......but I can't take her hurt on.....I have too much of my own to deal with right now.After a nice and not so bland meal we made our way home -not too late as we need to be up for the 2am blood test again - which Ed doesn't wake up for!
Back to work for me, lots to catch up on. It's not so easy to concentrate, I don't seem to be able to get my head into anything....I know I need to, diabetes doesn't scare the bills away. By the time I get home it's been another good day, Eds glucose levels are still high, but they said to expect that.
With me back at work everything seems normal.....I still have the knot in my stomach to reminding me it's not......but it seems it is. Life goes on at home.....regular text updates of Eds glucose levels come through.
Last weekend before everyone goes back to school so we decided to go on a day out, that somewhat resembled a military operation - .glucose tablets hidden in every part of the car - glucogel stashed - spares of everything to do with diabetes - picnic minus all the bad things - that would be a bag of egg sandwiches then! I don't mind, that's how life is now, that how it needs to be.The day was great, we had such fun and almost forgot about diabetes a couple of times but there's always a reminder: an ice cream stall, a sweet shop.....walk past quickly and the kids won't see!
Early start for rugby training. Ed can join in again now; get a good breakfast down him so he's got energy to burn off, I've got all the glucose tablets I need and I can get lucozade sport at the club.
We couldn't get into the club - no one had the bloody keys - hang on I need to get in Ed needs Lucozade.....oh God - Sam will have to go to the shop! Note to self "buy shed loads of Lucozade sport incase the club is ever shut again! Ed really enjoyed rugby.....not quite back to his full self but he enjoyed it all the same. He was tired the rest of the day, but I was happy, I saw a glimmer of the old Ed.....one I now realise I haven't seen for a while.
I keep having these flash back to things.....clues to this happening, things I didn't notice at the time but now beat myself up with..... The short mountain bike ride with Sam that he couldn't finish when I know he can keep up with me for 16 miles....turns out he wasn't being a lazy boy. The emergency dashes to the toilet in the night to pee which meant there were puddles on the floor....turns out he wasn't being lazy, he just couldn't get there in time. On holiday we spend most of everyday playing in the pool...not this year, he was tired, maybe he's growing out of playing with me.....or maybe he just had no energy.
The pint after pint of water; you hear of the diabetic thirst, but to see it in action is just something else.Running at the back of the pack in rugby training; maybe he hadn't got so out of shape over the summer break......maybe he just had no energy. God how did I miss all this.....what kind of a useless father am I?.....he was obviously not right and I just missed all the signs.
In my head I know I'm not being fair on myself, but in my heart I should have known, it's my job....to protect, and a part of me feels like I let him down and that makes me sad beyond words.
Sam’s back to work for teacher training, so my mum looked after the kids today. Spoiled with bits and pieces they had fun and were all in one piece. I had my regular glucose text updates so that kept me in the know. This evening we got everything ready for school. Henry would start his first school in the morning, Ed would start high school and Lydia would return to high school in the 2nd year, no longer in the newbie year.
I didn't sleep so again well last night....guess I was worrying about all the change....not much time to dwell though as it was a busy morning. Everyone was up and ready early. I was to get Henry to school on time for his first day....Lydia and Ed would catch the bus and once Henry was settled I had to speed to Edwards school, to drop his medication with the school nurse.
Today was hard enough with all the school changes, but the advent of Type 1 just made it harder.....who was going to look after Ed; I don't know these teachers and I don't know they are competent to look after him....who will remind him...how will he get his lunch on time......oh god I can't go on like this I'm going to send myself nuts.....I have to let go, I know that but it's hard.
By 12:30pm Ed hadn't text me liked asked, so I called him up - he didn't answer - call again, this time he answers and he is fine, injections done and he's off to lunch with his pal - no sooner had I said hi and he was saying bye. He's going to be just fine.
The rest of the weeks speeds by slowly, but each day he is fine, each day his confidence is growing and that allows mine to grow also. Ed invites his pal to stay over on Friday night, that's good for him, normality
Me, Ed and his pal Sam help out, knocking a shed down at his uncles Ed enjoys that kind of thing and again when I look at him through the day I catch a glimpse of my Ed....he's almost back firing on all cylinders. For their hard work I promised them they could go to town for a couple of hours on their own in the afternoon, they both want new hats.
Oh god I said he could do that and it dawns on me that they will be on their own, what if something goes wrong, what if he has a hypo? I slapped myself again, things have to go back to normal, we can't avoid things, he has to have his life.
Before they went to town we talked thought everything, Eds blood levels were fine, he had his phone, his dextrose tablets, and his blood tester he was good to go. We dropped them off, arranged to pick them up in a couple of hours and took Henry for a drink. I lasted 45 minutes before calling to check all was ok.....on the pretence of seeing if he got a hat.....and of course he was fine.
On the way home I asked if Ed's friend Sam wanted to stay over again. He asked if Ed could stay at his - whoa whoa whoa.Ed stay out: err that's one I hadn't thought of. He's stayed out at Sams house hundreds of time before, but that was before!
After settling down with the idea I knew I had to let him stay out. Sam's mum and dad are very close friends of ours and they would look after him like one of their own, of that I'm sure, but still it was going to be a long night. The regular text updates on glucose levels told us he was fine, and that he was
Things will be fine from here on in I'm sure, we have lots more to learn and I'm sure we will come across difficult times, but we are getting there. I feel like we are starting to live again, not just survive!
I planned to finish my diary with the last entry, but tonight made me want to write a little more.Things have been slowly settling over the last 3 weeks. Everyone has settled back at work and school. Ed is managing his regular injections well, we had our first diabetic clinic yesterday. The doctors, nurses and dietician are happy with how everything is going - nd largely so are we.
There are still good days and bad days but the good outnumber the bad, and that's a good place to be.Tonight though everything came real again......it's strange, all the needles are there, the beer and wine fridge now carries insulin and bright orange glucagon injections to keep it company, the regular calls to the doctors to get more supplies etc etc.......but still I have these moments that hit me like a sledgehammer.........moments of disbelief, of realisation.
What set it off? Sam reading the JDRF websites, looking at the things we can do to help ‘the cause’, events we can take part in. I love cycling, and I have ridden many events for charity.......local hospices, heart foundation, charities that I respect and support, but that are largely detached from my day to day life.........but as I read the details of the "Tour De Type 1" event in 2014 it suddenly dawned that not only do I have to take part, but from here on in I would be supporting a charity that directly affects my day-to-day family life.
I don't resent that, I guess I just never expected to be in that position......and like every parent never wanted to be doing it on behalf or for the benefit of one of my children.
If I could take it away from Ed I would do anything in my power.....but I can't, and that as a Father is a bitter pill to swallow. But what I can do is help him, guide him, educate him and prepare him for the road ahead. That is something I can do, and I give my word that it is something I will do with every ounce of energy and passion in my soul."
Words by David