Diabetes Queen  Mothers 

Diabetes Queen Mother

When your child is diagnosed with Type 1 diabetes, it is the loneliest feeling in the world! For me, it was the first time that I couldn’t wave my magic maternal wand and make something nasty and unwanted disappear. Other than health professionals (who can be amazing) there is generally no one to tell you what to do or help you help your child. Whilst it is your child who has diabetes and not you, you are their primary caregiver and as such are reponsible for them. This can feel all consuming.

A year after my son’s diagnosis, I discovered the diabetes online community. I read lots of blogs and found that I wanted to write my own. I am really clear when I write that it’s not me who has diabetes. I do not reveal my son’s name and I don’t post photos of him on my blog or on twitter. That is my choice, as I know my boy and he is private about his diabetes. 

It is hard as a parent to know what your online profile should be. Clearly, most of us do not actually have diabetes but it is such a big part of our lives whether our children are five or fifteen. I often feel hypocritical for even writing about diabetes as I don’t have it, but it can dominate my life and I do enjoy the connections I have made with people online, especially some other mums.

As 2017 comes to close,  I have seen the amazing phenomenon that is Constance Hall (read about it here). I follow what Constance does on Facebook. It’s so fantastic how she tells it like it is and connects with women across the globe with her total honesty and humour. I don’t need to agree with everything she does and says.  Her success comes from talking about how life really is. She hides nothing and people love this about her. Women being there for each other is not new but using social media to do this is a relatively new phenomenon.

With this in mind, I would like to pay homage and respect to the Diabetes Queen Mothers out there. There are many ways to be a Diabetes Queen Mother. None are wrong. I realise that some mums do things differently from me: some share much more than I would, others are more focused on research, and my own way of coping is to try to be realistically optimistic and focus on hope. 

We are all different yet we are all connected by Type 1 Diabetes and together we are stronger. It’s not our task to critique or question each other. We are not digital natives and we can be clumsy and awkward.  We don’t have solutions or cures but we have real, lived experiences of helping our children grow into strong, independent young adults. We need not always agree but we are Diabetes Queen Mothers.

Who are my Diabetes Queen Mothers? 

(In no particular order)

carbcountingkids.com

@carolynboardman (on Twitter)

@cstevens338 (On twitter)

Bigfootchildhavediabetes.com

Brightoneagle.wordpress.com

T1dandgf.wordpress.com

Acornishmum.com

Racheljgood.wordpress.com

@deepost30 (on twitter)

WaltzingTheDragon.ca

actuallymummy.co.uk

I’ve focused purely on Diabetes Queen Mothers in this blog. That is not to take away from the Diabetes Queens and Kings out there who inspire and teach us every day in many, many ways.


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What not to do! The Opposite of Tricks and Tips- Diabetes Blog Week

Tips and Tricks – Friday 5/20 Let’s round out the week by sharing our best diabetes tips and diabetes tricks.  

When I saw what we were to blog about today my heart sank! I make mistakes all the time so from my now quite considerable experience, I can certainly pass on some advice to mothers of children with diabetes: what not to do!

Night time blood testing: 

These have all been tried and tested on my poor child. Do not:

  1. Try to use your phone as a torch by holding it between your teeth whilst simultaneously doing a finger prick. The angle at which you have to hold your head in order to shine the torch on the sleeping child’s hand means that your head is so far back that the hand is no longer in your field of vision.
  2. Use a camping torch on your head. Yes, it certainly does free up your hands but the look of terror on your child’s face when they wake due to the intense light in their eyes, is one you will not forget in a hurry.
  3. Choose the wrong child when entering a dark tent in the middle of the night to do a blood glucose check. Nuff said there!
  4. Take offence if your sleepy child chooses their middle finger for their blood test and even if they stick it up in a way that in other circumstances would get them in trouble , let it go! They have to get their revenge sometimes!
  5. Forget to wear your glasses. Leave them next to your bed so that you put them on as soon as your alarm goes off. If you need to make corrections to high levels, 5% can look very like 10% when you are flying blind.

Accessories. You will not need :

  1. A small handbag! Even if it’s cute, in a sale and made from Italian leather , you will not be able to use it and it will mock you from the depths of your wardrobe.
  2. Jelly beans in your bag when you are premenstrual! You know they are for your child’s possible hypos but your desire to eat them will be so strong that you will not be able to resist. You will feel guilty for the rest of the day. Stick an extra popper in your bag instead!
  3. Cheap make up! Invest in some good quality makeup. You know you deserve it! It covers up the bags under your eyes from the night time checks and stops people asking if you’re feeling sick! I’ve had to tell my mother in law to stop asking me if I feel sick when she pops into the house on a Sunday morning. This is what I look like without makeup , do not try to rub away invisible stains under my eyes (true story, I swear!). This is what your son wakes up to every morning so deal with it woman! ( I do love her, just not when she licks her finger and attacks my face to remove stains that are just under eye shadows from lack of sleep!)

Cooking and food. You must never:

  1. Forget the maths you learnt at school. You forgotten it already? You poor sod! Relearn it pronto!
  2. Lose your calm whilst making calculations under extreme pressure- it reminds me of my brother’s paramedic training where he was forced to drive at high speed whilst answering complex medical questions. The more likely scenario for us will be a starving child and buffet type meal. You may develop a muscle twitch in your eye when computing the carbs. Be careful who you look at at this point as you may receive some unwanted advances from the strange little man at the end of the buffet who thinks you are winking at him! Read this poem about being a carb counting queen.
  3. Try to pretend a cauliflower sauce is carbonara. If you are going to tell lies about food, it must taste nice! Chocolate mousse made from avocado, maple syrup, cream and cacao is a rare exception!
  4. Give up! Trying to learn to count carbs when starting from scratch is bloody hard. Healthy, home made food is a great goal to have but dialling a pizza now and then makes life feel normal!

You! Do not:

  1. Forget about yourself. In the six months following diagnosis, I did not go out for fun. What if something happened to my child when I wasn’t there? Nothing bad happened and I was there so, slowly but surely, I let go. I do go out now and I’ve learnt to trust my son and those around him. My son also needs to see that him having diabetes does not prevent me from living my life. If I want him to live life to the full, don’t I need to do the same? Put your fears in a padded cell in your brain and deal with them when you feel up to it!
  2. Drink four glasses of prosecco in quick succession then fall asleep in the corner thus missing out on the fun night you’d been looking forward to for weeks! 

    I had such fun putting this list together, reliving some crazy moments from the last two years. If I look at the lists, and not the ‘do nots’ that come before them, these are all things I have done. We have survived and even had a few laughs along the way! Does anyone else have a list like this?

     

    Situation Normal


    This week in the House of Testosterone.

    Son X:

    Played a game of touch football on Friday night.

    Played cricket on Saturday morning for almost five hours.

    Trained for cricket after school one afternoon and went to the nets with Son Z on three other occasions to improve cricket (or possibly to avoid tidying room).

    Played basketball in the driveway with brothers and friends.

    Lay around playing new Playstation rugby game for several hours. Honed skills.

    Avoided doing homework with the skill of a pro.

    Son Y:

    Played two games of touch football on Wednesday night.

    Played basketball in the driveway with brothers and friends. Allegedly used rugby ball to shoot hoops thus causing crack in windscreen of nearby car.

    Lay around playing new Playstation rugby game for several hours. Honed skills.

    Finished two school assigments with minutes to spare.

    Son Z:

    Played a game of touch football on Friday night.

    Played one game of touch football on Wednesday night then refereed a game of touch.

    Played cricket on Saturday morning for almost five hours.

    Trained for cricket after school one afternoon and went to the nets with Son X on three other occasions to improve cricket (or possibly to avoid tidying room).

    Played cricket for school team.

    Lay around playing new Playstation rugby game for several hours. Honed skills.

    Flitted from one assignment to another, achieving not very much. Will need to hit the ground running this week!

    ………………………………………

    One of these boys has Type 1 Diabetes. Can you tell who it is? I thought not! 

    One of these boys is the boy and the egg: my amazing, busy son who has Type 1 diabetes. The other two are pretty fantastic too, in their own perfectly imperfect ways!

    I imagine in homes all over the world, people with Type 1 diabetes live normal, perfectly imperfect lives every day just like everyone else and manage their diabetes as best they can. I looked back this week at what my three sons achieved: mainly normal boy stuff with quite a lot of sport, not too much study and the usual measure of shenanigans!

    Looking at how people live full lives with Type 1 diabetes feels me with hope and joy. I love beyond type 1 for the way in which it does this.

    Flourless Chocolate Cake

    Ah the wicked web we weave…..

    My boys love this chocolate cake. I love it too! It’s a relatively healthy, high protein cake full of chick peas and never once in all the times I’ve served it up to friends, has anyone guessed that chick peas are the secret ingredient. I only give this recipe away if promises are made never to reveal this! You can pretty it up with a dusting of icing sugar but there’s not really any need. I love that it’s high protein! 

        

    A ‘what if’ day

    Most days my son goes into the world with total confidence and a good level of trust in those around him. I’ve trained myself not to worry about him and not to pester him with texts about his BGLs and what he’s eaten.

    Days at work pass very quickly and I’m pretty good at focusing on the task at hand. There’s not much time for naval gazing when you are a teacher. I trust my boy to do the right thing. What worries me is the ‘what ifs?’.

    These are things which come from nowhere, which are outwith my son’s control but are all part of the rich tapestry of life with Type 1 diabetes.

    These days usually come after a ‘diabetes disaster’. These rock our world when they happen and our sense of confidence is shaken. It takes me weeks, if not months, to feel good about letting my son do normal teenage things after a disaster. I can see he feels the same but he still does everything.

    What is a ‘diabetes diasaster’?

    Firstly, we are lucky that we haven’t had many!

    My son’s recent school excursion, where he had two hypos, told the teacher he was dizzy and was told to go and lie down for a bit was a near miss. A teacher telling him it was possibly just low blood pressure due to having grown so fast did not help. He so wanted to believe that this was true! What saved him, is that he had the sense to text me, telling me he was dizzy and didn’t know what to do. For him to text me anything about his diabetes was a total red flag that something was very wrong.

    Since this happened, he is absolutely worried about having hypos at school. I don’t blame him. The school is coming on board with education which is a positive thing for all the students with Type 1 who go there.

    I think: What if he hadn’t sent me a text? What if he’d had a fit in front of his peers? What if he’d gone back to school then got the bus home having used all his poppers? 

    None of these things happened.

    He thinks: What if people start seeing me as the boy with diabetes? What if I collapse in front of my mates? What if the teachers stuff up again? 

    None of these things have happened. 

    Diabetes does not rule our lives so when my son asked if he could go straight from school to watch his friend’s rugby final tonight, I said yes. His team didn’t make the finals which could have been awkward in the House of Testosterone when both of your brothers both made it through. He’ll get a lift home at 10pm with his friend’s dad. I’ll be standing at another rugby field cheering on number 3 son whilst my husband does the same for our 16 year old.

    Diabetes does not rule our lives so of course I let him go. Accepting that I will have a ‘what if’ day is my role as his mum. I’m sure there will be many more as he goes on his way and has his adventures. The main thing is, that he has his adventures and that I keep my ‘what ifs’ to myself!

    Dear teacher

      
    Parent teacher interviews last night. Great to hear that these teacher’s know my boy. I know that our beloved educator is going to do a talk to the staff soon. Last week we had a near miss and the lack of awareness could have come at a huge cost to my son’s health. 

    It has all been a reminder to us of how vulnerable we are when we send our children off. We hope that the teachers remember who our children are and what they need to do for them: it’s usually nothing but when things go wrong we need them to have a minimum amount of knowledge. I thought I’d been proactive but that was not the case.

    I know this job. I’m a teacher too. This makes it even harder as I know what a tough gig teaching can be. I feel conflicted but making sure my boy is safe is my priority.

    I wrote this poem at the start of this year when my son returned to school after the holidays. All my nieces and nephews in the Northern Hemisphere head back to school soon as we edge closer to our Australian summer. This is what I’d really like to say to the teachers.

     

    The Boy and the Egg Part 2

       

    Last week, I wrote about how I picture my son’s Type 1 Diabetes as an egg.
    (https://mumoftype1.wordpress.com/2015/07/22/the-boy-and-the-egg/)

    My boy’s egg nearly smashed today and I’ve never been so scared in my life.

    There’s no point in rehashing the smaller details but those in charge of a school excursion did not follow protocols: management plans were not followed, phone calls were not made, all of which resulted in one sick little man. My heart is sore for him tonight!

    He is home, he is fine and the mother hen in me has ‘sorted out’ (think female Billy Connolly in a seething rage) the school, and it should never happen again. Education will be put in place very soon, people will learn from this. I have to see that as a positive.