The Boy and the Egg pull some moves!

So here we have it. Remember The boy and the Egg? I wrote this not long after my son was diagnosed. He spent his 13th birthday in hospital a couple of days after his diagnosis. How times have changed! And how they’ve stayed the same!

So here we are over four years post diagnosis. How is my boy and how is that Egg? I’m so pleased to report that both are intact! Initially the worry was how my boy could play sport, navigate school, hang out with friends and still manage to take care of the Egg. I’ve written about the Boy and the Egg quite a few times if you’d like to read them please click on these links:

The Boy and the Egg Part 2

The Boy with the Egg is growing up

The Boy and the Egg go on an Overnight Trip

These days, the Egg goes on dates. Through what I can only imagine are passionate embraces, the Egg has not been smashed. The Egg has also been there when a heart was broken. Not my boy’s, but an amazing young woman who was his first serious girlfriend! He had sat with the Egg in his hands as he tried to think over how to be diplomatic and delicate in ending this relationship. The Egg lost a fierce protector when the relationship ended but having someone to share the Egg with is not enough of a reason in itself to keep a relationship going. (Note to self, as the mother of three boys, do not fall in love with your son’s girlfriends!)

The Egg is a frequent attender of parties where my boy can hold a beer in one hand and the Egg in the other and can apparently pull some dance moves at the same time. How amazing and terrifying is that? In order for this to happen, we had to have some Egg and Alcohol sessions at home. We gradually increased the number of beers my boy had over the course of a few weeks, making sure he held on to the Egg and never left it where it could be smashed. We checked frequently throughout the night that he hadn’t rolled on it and smashed it and so far so good! We have had to be totally realistic about alcohol. We are living in the real world and facing the challenges in a way that reflects the reality of our boy’s life.

Driving with the Egg on the dashboard presents a few challenges. Keeping an eye on it and the road can be hard, especially when you are a learner and you have a parent there with you, trying to explain what to do. My boy has recently moved from an automatic to a manual car and those gear changes certainly increase the adrenalin and those kangaroo jumps can be scary and are accompanied by pleas from my boy that I stop swearing.

Working in a fast food outlet with an Egg in his pocket has been interesting. Finding a part time job that is permanent , rather than casual, has meant that employers have had to acknowledge the existence of the Egg. They have been offered the chance to be trained in Egg Preservation but it hasn’t been needed so far. The main thing is that my boy can take that Egg out of his pocket if he needs to as it isn’t a secret. He can take time out on a shift and make sure it’s alright. He gets holiday pay and sick pay which is an incredible thing at this age and offsets the lower hourly rate.

We live in the country and many of my boy’s friends live in other towns and villages which are not necessarily close by. This means he has days and nights away and as he has expanded his social circle it means the we do not necessarily know the families of these friends. Trust and honesty have never been as crucial. We have a little kit bag which serves as a nest for the Egg. When he goes off, my boy packs it full of everything he may possibly need for a couple of days and promises to text us regularly. He knows, if he has a big day or evening, that he’ll need to wake up during the night and check on the Egg.

Our boy has realised this summer that having the tiresome responsibility of the Egg does not preclude him from all normal activities. He has taken on a more active role in looking after the Egg. We are still there as the Egg Support Squad in the background but as he gets ready to finish his last year at school and move on to a big exciting future, I feel like he has the world at his feet and a good grip on that Egg!


Future perfect

This time of year is all about looking ahead. My eldest boy has finished school and has commenced a physically demanding, full time job for his gap year. My youngest son is approaching his 14th birthday and is still a total, joyful delight having not yet entered the ‘tunnel of puberty’. Things with these two sons feel quite settled.

My middle boy who has Type 1 diabetes will turn 18 at the end of this year. Is that the age of maturity? Time alone will tell but I am a realistic optimist by nature!

By the end of this year he will have had ( I had to get an example of the future perfect tense in here somewhere!) Type 1 diabetes for five years. It has accompanied him through puberty, sending him on a BGL roller coaster for a couple of years. He has grown from a spindly legged little whippet into a into a slim, 6′ 5″, mini moustache sporting giant.

This year is all about the next stage in getting ready for independence as he will most likely leave home to study in 2020. We struck a deal before Christmas that we would give him the independence he craves so much if he showed us that he would take over certain aspects of his diabetes care.

The biggest two areas were: following the insulin doses for each meal and writing down his blood glucose levels three times a week. I know from experience this year that if these two things are in place then everything else generally seems to flow nicely . Writing down those levels is a right royal pain in the bum, and it’s something I have largely done over the last four years. It doesn’t bother me but it’s not related to anything in my body and being one step removed from what those numbers mean must make it easier, I’m sure. We do need those levels though, as through all the changes related to growing, exams, stress and sport, we need them to work out changes in insulin doses.

My boy is absolutely and with total certainty against using a pump or a CGM. I would have loved for him to try these forms of technology, especially the CGM, as I think he’d be surprised at how it could help him, but it’s not my gig. I used to dream about how these devices would help, but at the start of 2018, I’ve decided to let that all go. So much of what I read online relates to pumps and CGMs. As a parent of a child who does not want these things, I cannot help but feel excluded from many of the discussions. I feel like I know a fair bit about both but I will need to take a step back from all that, stop putting subtle (okay, sometimes not so subtle) pressure on my boy and allow him to take the lead. He has shown the tiniest spark of interest in the FreeStyle Libre since he heard that it can be used for insulin dosing. I am saying nothing and waiting for him to make any decisions for himself.

This means that when he goes out he takes our absolute trust and full control of his diabetes management with him. Easy eh? How about mixing that in with parties with alcohol, sleepovers at friends’ houses, and days like today where he is off with friends to the nearest city to watch a big cricket game.

As parents of a young person with diabetes, you find yourself doing hitherto unimaginable things like teaching your child to drink alcohol. We have had a few awkward and funny afternoons and evenings handing over beers to our son and watching the impact on his levels. It seems to have worked and he has gone out had quite a few beers, stayed away all night and come home in one piece with levels which were pretty good the next day.

Do you know what’s so brilliant about all of this? He is having fun! He is not focused on his diabetes but is accepting that it’s an unavoidable part of his life and he is dealing with it!

Thinking back to when he was diagnosed over four years ago, I never thought this time would come , yet here we are! I look back to those feelings when he was first diagnosed. I wrote this poem when I could not imagine the future we are in now! I feel incredibly lucky that we have been supported by an amazing Diabetes Educator who has encouraged my son to do whatever he wanted to do and who, from the very beginning, suggested we fit diabetes into our lives and not the other way around. There will be challenges ahead but it is an an incredible feeling to start 2018 feeling like there is hope for a full and happy future!