One Hat Is No Longer Enough

Since starting to put down my thoughts in word on this page I've also read with interest the views of parents of children with diabetes. Reading their stories I’d often sit a little bit too comfortable and be grateful that I was only looking after myself. Well you can guess what happened next.

In summary my daughter Martha gained the unhelpful antibodies and was diagnosed with Type 1 just over a month ago. The diagnosis bit is covered expertly by her here - My diagnosis

Looking back there was a viral infection about a month before. For the week prior to diagnosis all 4 Ts existed in some way. But a bunch of assumptions on what the cause might have been for these independent factors meant we didn't join up the dots immediately. And you'd think we'd know what to look for!

To say it hit us hard is putting it mildly. And that's coming from a family already managing my diabetes 24/7. It might be wrong to feel lucky in a situation like this but, if it was going to arrive anyway, I'm glad the whole family's experience of me helped us to hit the ground running. Being able to do a quick doom-laden finger prick on the morning of diagnosis gave us the key fact. From there we followed the process through. Knowing that it would be tough but not impossible enabled us to see the light. I can only imagine the horror and uncertainty that will come if a newly diagnosed child is in your family and all this information that you need on day one is suddenly dumped from a great height.

I'll take a pause here and thank the fantastic team that dealt with us on the day and have done ever since. It was flawless. A call by Laura to the GP surgery at 8am, appointment with GP within 3 hours, referral straight to paediatric ward at Royal Lancaster Infirmary, diagnosis confirmed by a range of nurses, doctors, and blood-suckers, meetings with consultant, dietician and DSN and release home (at our request) all before 7pm. We will forever be grateful for your speed and human touch on a day that wasn't easy emotionally for any of us. 

Talking with my parents later it brought back memories of me as a 3 year-old being made to run up and down the hospital corridor so that they could see what would happen with my co-ordination when my blood sugars dropped and I had a hypo. Thankfully none of that here!

All credit to Martha, she was the one pushing the 'no-limits' boundaries from day one. Within an hour of the formal diagnosis a professional asked her about the sport she plays. Her response was that two days later she would be playing for her school in a football cup final at Morecambe FC. There wasn't even a thought in her mind that diabetes could stop this. And it didn't.

Very quickly it became apparent that all the decisions I make silently in relation to handling my diabetes we would need to teach Martha. And that's been hard. Anyone with Type 1 will probably agree that not all choices made are logical or fully proven. There's an awful lot of "well, let's try this and see if it works". A definite difference though if the experiment is on someone else's body. It's well shared that at least 42 factors influence blood glucose. (Because 42 is the answer to life, the universe and everything.) Now I need to pass on those factors.

I'm experienced at managing an adult's Type 1 using a variety of of technology. Now it's a clean start with injections, finger-stick blood tests and a quickly added Libre. We've played it safe all the way. Despite the urge to get straight into carb counting, dose adjustment and Libre we hung back and waited for the green light from Martha's team. Any changes to insulin dosage, exercise strategy or carb-ratio is discussed with them first as they have much more experience with 12 years old and type 1 than I do; a few decades have passed since then for me. There's also now Youtube which is always a great source on helping see things in action. As an example look at my little helper when I did one for inserting a Libre. That person also appeared in quite a lot of my other diabetes video blogs which is a sadly ironic now.

The impact on the non-D members of our immediate family can't be understated. Diagnosis in a family with no-one with diabetes leads to a very steep learning curve for all but it's a shared learning experience. I know Laura found it hard as the mum will naturally have a big part of the early diabetes decision making. Because I'm, sort of, experienced Martha naturally asked me a lot of questions early on and for Laura this must have been hard to see. We both had stages of grief at what was lost but I was able to slip into organisational automode and just work through it. Thanks to this blog and other social media I also have quite a large network of people I could call upon for support.* Laura didn't have this although the contact from other mums since has helped a lot. For Martha's brother he has been fantastic in wanting to help her and make sure she is OK. Proud of you Joe. I don't want to speak for him but I know it's been hard to see this happen to his sister.

*A quick word of thanks to the all people who have either reached out to me or responded to my requests for help. The cushion of support felt is priceless. You know who you are. Thank you x

Now that it's post Christmas and we're more than a month in, normality is starting to arrive. The usual sport driven activities are being worked into her treatment and she was fantastic in managing everything. Last Sunday with two intensive football games lasting over an hour that were only 75 minutes apart. She bossed it.

For my diabetes, this has gone into autopilot. And for this I am eternally grateful for my 670G. It's allowed me to drop the ball a couple of times and fixed things through the night when I've not bolussed correctly or just eaten badly. I absolutely love this piece of kit. Considering 1979 or now I know Martha is 'lucky' to be in a place where the 670G, other homemade artificial pancreases and devices like the Libre exist. Some of it might not be right for her now or in the future but the fact they exist at all is just mind-blowing.

Since New Year Martha has had a lot of lows that we needed to record so that we could find a pattern to share with her team. And thanks to the food diary and Diasend this has been used to make a couple of adjustments. It's highlighted to me that there's no substitute for detail when trying to identify a pattern. And so my note taking has kicked to try and improve my numbers too.

So my Diabetes Hat wearing now comes in two forms. One for me and one that I share with Laura and Joe for Martha. Martha has her own hat. It has definitely allowed me a better perspective on what being a parent of a child with diabetes is like and I do hope and believe that my time stabbing and dosing myself will help a little. Time will tell.

Thanks for reading and once again I'll point you to the real leader and expert in Martha's diabetes - https://martha1diabetes0.blogspot.com/