Interview Series - A Mother's Perspective

My gorgeous Mother and I in 2015

I  interviewed my lovely Mother about what it is like to have your child diagnosed with Type One Diabetes at the age of 4. We talked diagnosis, coping mechanisms, self-care, third-parties and advice. I hope you enjoy seeing a Mother's perspective of Diabetes.

Question 1. What was the most difficult part of Amber's diagnosis?

In some ways the diagnosis was a relief, because I knew Amber was ill and something was seriously wrong, my mind as a parent went into overdrive. I had some knowledge about what diabetes was, and there was some comforting element in knowing that diabetes can be managed..that was my first reaction. After that it was '..Oh she's only four years old, how are we going to do this?'. I'd say that was my immediate reaction, we simply didn't know what was going on.

Question 2. How did you tell Amber about her diabetes?

Amber was only four so the word 'diabetes' and trying to explain what that is was just not possible. So we said something along the lines of 'The doctors had found out why you feel poorly and you've got to have medicine every day in the form of an injection to make you feel better' (Amber started on twice daily injections).

Question 3. How did Amber take the news?

At the time of diagnosis Amber was 4, so when we first broke the news she didn't understand.. it was no big revelation to her. When it came to do the injections we just kept repeating "The doctors and nurses have said you need to have your injection to make you feel better". We would use a teddy to inject and then we would inject Amber, she would talk to Ruby (the teddy) and support her. Amber cried and yes that was difficult but knowing that Amber had to have it kept me calm but assertive to ensure that Amber knew that she had to have it. To not give her injections was simply not an option.

Question 4. Whilst Amber was growing up, how did you cope with the high and low blood sugars?

We used to test her blood glucose levels for her and that was always tough because she only had little hands. Quite often we would know by Amber's behaviour if she was low or high, particularly if she was low she usually cried and went pale and quiet. Amber wouldn't recognise her own symptoms she would just cry, we tried to teach Amber to be self aware. Sometimes we'd see her hands shake and ask 'Do you feel shaky?'. Hypo was known as 'shaky' for a long time. If Amber was high she would be very angry, shout, drink a lot, her eyes would even go black. She would turn into a completely different person and would always apologise once she felt better. We would try to get Amber to realise that being angry when she was high was not her fault, but she needed to test her bloods and inject so she would feel better.

Question 5. Is there any moments in particular that you remember being upsetting or challenging?

I think the challenging part of T1 Diabetes is that you can do everything by the book but yet sometimes their blood sugar levels are still not right. That was really hard to tell a child who is feeling really crap, as a parent we did everything we could to ensure Amber felt alright, and when she didn't that was tough. Her Dad and I chose for him not to return to work so he was there to take Amber to school, be there after school, and their in the half-terms and holidays. He came to Amber's school to do her lunchtime injection and went on school trips with her to make sure we could give her the most support and the best care. He was here all the time for Amber until she could start to take on that support herself.

This quote makes me think of you Mum.

Question 6. You mentioned earlier about Amber being self aware. At what point did Amber take on that roll of self care?

She began doing her own blood glucose tests at the age of 9 which is absolutely amazing and not long after that she moved to a basal/bolus regime which is when she learnt to inject herself. Amber did her bolus and we would inject her basal for her in her back. She then started to calculate her own carbs and carry her diabetes supplies around with her instead of us taking them. She took on responsibility for her own diabetes treatment with the support of mum and dad but she was making decisions about injecting, when to inject and ensuring she had hypo treatment. So from that side of things Amber was more mature as a 10 year old.

Question 7. How did you explain to third parties about Amber's diabetes?

We had an information sheet in Amber's bag with emergency contact numbers and what to do in an emergency. If she went for a sleepover we would have to talk to their parents to make sure they were happy and also that we were by our phones if Amber needed us. We never met a parent that wasn't happy. When Amber reached an age where she could explain herself then we would encourage Amber to tell her friends parents so they were aware. In terms of teachers we would go in and speak to the school nurse and make teachers aware, especially of hypos. We applied for extra time in her exams to allow for low and high blood sugars. All things that we didn't really know about and found out as we went on. We also kept an eye on our other children and family members for any possible signs of T1D, we would test their blood glucose at the slightest symptom.

Question 8. What advice would you give to parents of newly diagnosed children?

Words we live by..

I think it would be that your child is still your child, she/he has diabetes but first of all, and always first they are your child. There is a danger of seeing the diabetes first. I can remember once Amber came back from a party and we jumped on Amber and said 'What did you eat?' and 'What are your BG levels like?' and then asked 'Did you have a nice time?', I felt quite sad about that because it should have been the other way round. Just don't let it take over your life. While is has to be managed every single day of your son or daughters life, they are more than their highs or lows.
On a positive note, I think it's engendered a very close relationship between Amber and I, it has allowed us to raise money for diabetes charities and taught us not to sweat the small stuff. I also have an auto-immune condition and can tell you that life is worth the living. For Amber it has given her a very different view of life that others may not have and it's made her the person she is today, she's social media-ing, helping others and raising awareness.