Parents of a Child with Type 1 Diabetes
I wanted to take this time to share with you our story of being parents of a child that has type 1 diabetes, in the hope that it helps other parents.
On the 27th April 2013 our son Max was born, this was by far the happiest day of our lives. I had made him a promise that no matter what life throws at him I would always be there to help!
Like all parents we all remember the first time you hear them say Daddy or Mumma and their first steps to potty training, events that you cherish for ever and remind them of as they grow up. Difference for us is that we also remember the day we had the news that Max had Type 1 Diabetes, a memory we wish we never had.
Max was such a good baby, laughing and smiling all the time, it wasn’t until he was 18 months old that we notice he wasn’t himself.
The week before Max was diagnosed was a strange week, Max wasn’t himself he was full of a cold and cough and looked like he was losing a bit weight, so we consulted our GP to have him checked out. We were told he had a virus which would pass and the GP recommended Calpol and to come back in a few days if we did not see any improvement.
Max was always thirsty as every drink we gave him he didn’t take a breath, he couldn’t drink it fast enough.
Scary as it is now but we had been to one of his friends birthday parties and me thinking I was doing the right thing by trying to build up his energy, giving him cake sweets and fizzy drinks, having no clue of the damage I was causing him, other symptom was that he would go to the toilet a lot in fact every morning my wife Sarah would have to get him undressed in the shower due to how wet he was, the chemicals in his nappies where all over his body and his cot was leaking wet. We put this down to the amount he had been drinking as Max was always thirsty as every drink we gave him he didn’t take a breath, he couldn’t drink it fast enough.
Towards the end of that week we were all looking forward to a Halloween party with family and friends but we couldn’t help but notice that Max wasn’t getting any better, the night before Halloween we took Max back to the GP and explained all of the symptom’s, we were told once again that he had a virus and that he should go on a course of antibiotics, most annoying thing about that trip was that the GP asked us both if we had anyone in the family that has or has had diabetes which the reply was no.
31st October 2014 Halloween the scariest Halloween of our lives. I was at work when I got a phone call from my wife Sarah not long after I had left the house, she had been watching this morning, Dr Chris who was talking about type 1 Diabetes in children and what to watch out for, my wife mentioned this to me and my response was to not be so silly!! He will be OK once the antibiotics kicked in. Sarah asked me to come home as Max was very unwell. I was back within the hour, when I saw him he had no energy he couldn’t even find the strength to lift his arms, I picked him up and got him straight into the car and back to the Dr. I will never forget that moment seeing him just sat on the sofa with no energy, his only movement was in his eyes and his chest where he was struggling to breath, I didn’t show it at the time but I was afraid, the lump in my throat and the panic that was running through me was something I had never felt before but as us men tend to do far too much these where feelings that I had to hide so as to come across as in control and brave.
I remember when we got him home for the first time, it was like starting all over again with a new born baby.
Stafford hospital was the destination for us on that Halloween evening. Max was getting weaker and weaker as they carried out some tests on his bloods. Within a few hours we had been given the news that would change all of our lives forever, Max has Type 1 Diabetes, this was followed by the words that Max has fallen in to a coma and that they had one hour to get his bloods under control or we would have to be transferred to Birmingham children’s hospital where Max would have been sent straight to intensive care. We watched as the nurse would take a blood sample from Max’s little toes every 15 mins and watch while we waited for the right result to come back from the lab, when I saw the nurse jump for joy like he had just seen his favourite team win the Champions League I knew Max was going to be OK, we can never thank that hospital and the staff that looked after Max enough and continue to do so to this very day. Even though I knew Max was going to be OK I knew things where not going to be easy for us, the emotion I felt was like no other, I remember going out to my car and screaming out loud so not to show any weakness as Sarah and Max needed me to be strong, unknown to Sarah I had never felt so weak or scared in all of my life. I knew that I couldn’t change the fact that my son and my best friend had this awful disease for the rest of his life and at the time struggled to get my head around it.
Max woke up after 48hrs with puffed up eyes and skinny little body, boy was I glad to see him. From the moment Max was born my job as his dad is to protect him from harm so what came next was probably the worst part of it all. The diabetes team came over to sit with us to explain what life was going to be like from now on in, they had a bag with insulin pens and finger pricks which was very overwhelming, using them for the first time was one of the hardest things that I have ever had to do, Max begged me not to stick the needle into his arm, my 18-month-old son asking his dad to protect him but instead he had me holding him so tight so that he was unable to move while I hurt him with the needle. Took me a while to start changing my mind set to the fact that I was keeping him alive, Sarah on the other hand was a hero and I don’t think I would have coped without her.
I remember when we got him home for the first time, it was like starting all over again with a new born baby.
We have always been determined not to let this disease stop us from living a normal life but boy has it been hard going, from restless nights of constant checking his blood sugars on an hourly basis, to having to wake him up to give him a jelly bean to increase his blood sugars so that he would wake up in the morning. His friends think wow Max gets sweets in the night how cool is that, if only they knew.
For any parents reading this and your trying to decide about using an insulin pump I hope this helps, We decided that the best option for us was to put Max on to the Medtronic 640g (CGM Sensor) insulin pump, it totally changed our lives. The sensor monitors his bloods every 5 mins telling the pump what his bloods are doing which shows up on the screen, the advantages of this monitoring is that we don’t have to use a finger prick every time we need to check his blood sugar but by simply pressing an ok button giving his little fingers a rest. We still check before every meal just to double check the pump and sensor are working correctly. The pump also suspends insulin so if his bloods are dropping to fast it stops the insulin allowing his blood sugars to correct themselves, the best part is that it alarms you if the blood sugar keeps falling giving us a bit of reassurance and a better night’s sleep. I’m not saying it’s a miracle cure you still must count carbs and adjust the pump but we have found it so much better than using insulin pens. When Max is older he will be able to make his own mind up what’s best for him. The sensor is changed every 6 days and the insulin cannula is changed every 3 days which once you are used to it becomes very easy.
Max was 4 years old when he started school, another hurdle that as a parent we must get over. No one had looked after Max since that day apart from me and Sarah, so letting him go for the first time and trusting someone else to look out for him was very hard, our diabetes team spent valuable time training his teachers who have done an amazing job.
Myself and Sarah haven’t had a day together without Max being with us so simple things like going to watch a movie or going out for a meal has been something we have not been able to do as we felt it was too much responsibility to put on family and friends which has also been tough although we will be sure to make up this time when Max is a bit older and has a better understanding of his condition.
Like all children and their Amazing Parents we get on with our everyday lives and here that same question from other parents, how do you deal with all that? We deal with it because our children are everything to us, we deal with it because we don’t let diabetes beat us!!! At the start we lived with Diabetes now 5 years on Diabetes lives with us and we are in control of how it effects our lives.
We have recently been lucky enough to receive the new Medtronic 780g with Smart guard technology which has been another game changer in managing Max’s diabetes, from the ability to now monitor from my phone so no need to keep disturbing him and results are send straight from my phone to our diabetes team who recommend any changes that we might need to input, the amazing thing about the 780g is that it learns how Max’s bloods react and make automatic changes meaning we don’t need to do as much apart from entering the correct carbs at meal times. We owe a lot to Medtronic and can’t thank them enough for all that they do it’s totally changed our lives and I strongly believe that this should be available to everyone.
Max is now 7 years old and growing into the most amazing little boy who makes us proud every day. In December 2019 when Max was still only 6 years old he came home from school and shared the most amazing and positive idea with me. He told me that he wanted to write a children’s book, when I asked him what his idea was about it blow me away that a 6 year old would make the link that he did. Max believes that his insulin pump that keeps him alive is no different to how Iron-man’s energy source works in his chest, so Max really does see himself as an Avenger which in our eyes he’s right. Now this got us thinking a superhero that becomes super powerful after receiving an insulin pump a story and character that children with and without type1 can look up to and be empowered. From this conversation and many hours of playing with the story “The Adventures of Captain Lantus” was born!! A story about a town call beta Town where everyone has type 1 diabetes but instead of needing injections and pumps they are all protected by a magical cube that produces insulin for them. The villain wants to steel this cube as its worthy more than gold to him, one day Max volunteers to keep guard of the cube and just before he is left alone Mayor Bolus tells him about a secret project called the insulin pump, moral of our story is that the cube gets stolen and Max puts on the pump and becomes Captain Lantus and hopefully saves the day, but you will have to buy a copy of the book to find that out. www.captainlantus.com
During Lockdown there was a time where I thought I was going to lose my job and I said to Sarah if I don’t get this idea into production it may never happen, it was a massive risk for us to take financially but we were confident it would have a positive impact which is priceless. with the support from the diabetes community’s helping us achieve a Kickstarter campaign, we were able to bring this to life. We have sold a few hundred copies all over the world and have received the most amazing feedback from family’s, the book has done its job and made their children feel like a superhero which has always been our aim.
We have so many ideas that we want to bring to life for example the second book is ready to go, we have looked at producing costumes and teddy’s which we know children will love, I am currently working on an activity/colouring book which again I know will have such a positive impact, however all of the above takes time and money so we have been reaching out for sponsors or general ambassadors to help us promote this and move us forward. I have never written a book or been in marketing before so I’m learning as I go and we have always been so grateful for any advice or support.
Myself Sarah and Max would like to thank you for reading our blog and wish everyone good health and well-being,