Hello, I give you my son’s heart and his non functioning pancreas. Please treat both with care!


Hello, you don’t know me but I know that you know my boy. You two spend hours on snapchat and messenger chatting about who knows what. I know there have been face to face meetings too. I think it’s time we had a chat! 

Here is a little questionnaire I’d love you to complete. Don’t look alarmed! It’s all cool!

Part A) Stand on one foot and answer the following questions whilst hopping:

– 24 + 57 + 63 + 82, then divide by 2, then divide by 15. Got that? Good girl! 

– 29 + 81 + 12 + 75, then divide by 3, then divide by 15. Still going? Well done! You may proceed to Part B.

Part B) How deep a sleeper are you? How many hours sleep do you average and do you wake up to alarms? Please write your answer in the space provided below.

Part C) Do you prefer routine or have more of a devil may care attitude to life? Think back over the last week please and write down the times at which you ate breakfast, lunch and dinner?

Part D) Imagine you had a cute boyfriend. For easiness sake let’s call him ‘son of mumoftype1’! A bit of a mouthful, I know but bear with me please! Imagine this boy suddenly collapsed. Which number would you call? 

Part E) If this boy felt brave enough to tell you that he had a medical condition called Type 1 diabetes, how would you respond? Circle your preferred response.

– nod your head and ask a few simple questions.

– say “that’s what my best friend’s uncle had and he died.”

– run

Part F) If you have made it this far, you are a keeper and I ask only one thing of you. Please don’t break his heart! 

Times they are a changing as the song says! I am really enjoying seeing my boys turn into men but I have suddenly become aware of how important a role potential girlfriends may have. Excuse my tongue in cheek look at this! 

Diabetes Blog Week- Day 2 – Feeling Lucky

The Cost of a Chronic Illness – Tuesday 5/16  Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?

I find it hard writing this post. We live in Australia and if I were to complain about the little things that annoy me I would sound pathetic. There are people in the world who do not have access to insulin. This is why charities like Spare a Rose are so important.

I know there is such an awful situation in the USA at the moment. I follow what is going on on Twitter and I feel sick for everyone there. The stress of not knowing if you will be able to afford insulin or the sacrifices that will need to be made must be very scary indeed.

I do not know the feeling of worrying about being able to afford insulin. My son has a healthcare card which gives him an even greater reduction on his insulin, meter strips etc for as long as he is a student. We have a supply drawer full of needles, meters, ketone strips, glucagon etc.

We have access to an amazing team locally who will see us as often as we need and are available via text and email when things go wrong. Our paediatrician is available and has a good knowledge of diabetes. We see a paediatric endocrinologist every six months. How lucky are we?

My son, if and when he wants to, can have a pump to use to manage his diabetes. We are lucky enough to be able to afford the private health care which would make this possible.

A recent bitter sweet victory was the funding of CGMs for under 21s. Why bitter sweet? It’s fantastic for under 21s but what are they expecting to happen when those kids who have become reliant on the CGM turn 21? A lottery win? What about adults managing their Type 1 diabetes? I can only imagine it must be very hard for them if they want a CGM and cannot afford the costs. We can only hope that this subsidy will be granted to all those with Type 1 diabetes.

We have access to great food and have jobs which mean we can eat well every day.

I know there may be others in Australia who may not feel so lucky. I can imagine our story would not match the experience of everyone here.

It is so sad that our experience is not that of all those who have diabetes. I only wish it were!

 

I am an insulin pen

I am no ordinary pen.
My story is written in the veins of those whom I save every day.
There is no ink in me.
I push insulin through my nib into the flesh of those who need me.
Hands grasp me, dial up the dose required and plunge me into their flesh,
Multiple times of every day of every week of every year.
My needle pierces the skin, bringing a sting of pain.
Some consider me inferior, as technology could easily replace me
Yet
I am loved by many for my lack of intrusiveness and for the comfort of knowing that I will never let them down.
I have hidden strength in my little vial and never forget this.
Treat me with disdain and I can take you down.
Love me, handle me with care and attention.
Because of me, people lead lives both ordinary and amazing.
This is the gift I give.
The rest is up to you.



What I’d love to write to my son’s school

Hey

Yes it’s me again. The one whose eye you very carefully avoided when you saw me at school the other day. For your information, I didn’t even want to talk to you. I was there with another of my children. It was their moment. I respect that and so should you.

I know you saw me. I’m aware that you consider me to be a pain in the arse and quite frankly, I don’t give a flying duck!

Since my child was diagnosed with Type 1 diabetes three years ago, I’ve become an advocate for his rights. I have to because you don’t really look after his needs and I know for a fact that there are several other students at his school with Type 1 diabetes. I wonder if you treat them with the same disdain? 

I have never once been rude when I’ve approached you. I am direct as I’ve given up on the subtlety I previously favoured (see here)

Is it really that much to ask that the diabetes educator be allowed to come and talk to all the staff once a year? Can’t you schedule it in to one of the staff meetings? I find it incredibly rude that every single year I have to make multiple requests, with increasing forcefulness, before it is finally done. 

Last year, I ran out of energy and guess what? No visit from the educator! 

I have three children at your school and because of your lack of ability to deal with training, I have to be the one to send my child’s emergency care plan to teachers when there is an excursion. This doesn’t bother me but, as a consequence, I feel judged and I often don’t contact the school when there are issues with my other children, as I don’t want to be seen as ‘one of those parents’. That bothers me at times! 

I would not send them to this school if I didn’t believe it offered a good education and that most of the teachers really do care about the students, so come on! Step up and shoulder your responsibility in this!

In one of our conversations, you told me my child needed to speak up when he was in trouble with his diabetes. This phrase haunts me in rare dark moments and tells me you do not understand what happens to someone who, for whatever reason, and often through no fault of their own, has blood sugar levels which are very low or very high. I wonder what needs to happen before you realise? That is the question that rolls around my brain when I send off my child to your care.

It has, however, felt really wonderful to get this off my chest!

Yours,

Resting bitch face

Heroes can be gloriously everyday and wonderfully ordinary

Today I read the following blog from Insulin Nation. It really made me think, as this great site so often does. Have a click and see what you think. I love articles like this which make me question what I do. This article, from what I understand, discusses the idea of diabetes heroes and conquering warriors and how these images may have a negative impact on those who struggle with this condition.

From my perspective, it all comes down to how you define a hero.

The success of  beyond type 1 all across the globe, and in particular their Instagram campaign,  highlight the need for everyday heroes. It fills me with joy to read about all the people who have Type 1 and the things they do. These are people with whom I can often identify. I see my son in many of them and I love it! 

I am the parent of a 16 year old boy with diabetes. It is complex raising a child with Type 1 diabetes. Our aim has always been that diabetes would not stop my son doing anything. I honestly do not believe that his diabetes has stopped him doing any thing. That is what I believe is heroic.  I need my boy to see the length and breadth of his future and the endless possibilities which are open to him. It’s my job to sweat the nitty gritty of how this will be done and work with him and our team to figure out a way. He has days when he feels awful, when no matter what he does, however carefully he counts his carbs and measures his insulin doses, things just do not go his way. He does not dwell on these so neither do I. 

I don’t need to see elite athletes or super stars doing things, although it does give me a weird thrill when I find out that someone famous has Type 1 diabetes. James Norton, the extremely gorgeous actor from Granchester is one example.

Being heroic for me doesn’t not mean that my son conquers Type 1 Diabetes: it means that he lives a full and happy life despite having this condition. 

Being heroic means accepting the shit that goes along with this and doing what you need to do. No one is a loser if this doesn’t always go smoothly. Getting through two hypos and getting yourself out in the garden to smash your brothers at cricket is the example I am looking at through the window as I type.

Being heroic means feeling scared, knowing all the negatives that the media constantly presents and keeping going despite this knowledge. 

Being heroic doesn’t need to be big and amazing. It can be gloriously everyday and wonderfully ordinary. That’s what makes it beautiful! 

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.


That boy and the egg is growing up.

The boy and the egg
Is growing up
He now carries his precious egg to a part time job.
He didn’t tell of his egg’s existence on his application as he doesn’t feel it is a disability.
Time has moved on.
He hasn’t felt brave enough to show anyone his egg.
I worry that he finds it a burden and is embarrassed by its presence.
I fear he may not find compassion and understanding when he is brave enough to show it to others.
What if he is rejected?
Not telling them about the egg is equally terrifying.
It’s real and it exists and if it cracks one day,
People need to know.
Yet and still,
It hasn’t cracked.
It isn’t broken.
He continues to live the length and breadth of his life.
And me?
I need him to be safe but
I want him to be his own man,
To find his own way.