This is a blog post we’ve been thinking about writing for a while but have not known where to start, and do not feel like we have it all figured out. We still don’t have it all figured out and probably never will. But we started blogging so we could be honest and real about life with Type 1 – though at that time (4 weeks post diagnosis) we had no idea what was in store for us!
Almost two and a half years in and being parents of a Type 1 toddler is tough. It’s emotionally and physically draining. We’re exhausted from trying to be someone else’s pancreas all day and all night.
We’re also just trying to be normal parents to an active wonderful toddler who is exploring the world and developing more and more every day. And on top of that we each have jobs which we do full time. All of that on top of trying to make time for us as a couple! And expecting a second child.
Noah’s diabetes doesn’t stop just because we want to sleep. We never know how many alarms will go off during the day and night, or how his blood sugars will react to anything!
We’re still trying to figure out how diabetes can fit into our normal daily lives, or more often that not how we can fit our normal daily lives around diabetes.
Over the last two or so years we’ve had so many emotions. At the time of the diagnosis, we had a sense of relief that we’d finally gotten to the bottom of what was going on, and that we weren’t just overly anxious neurotic parents. Then there was the panic that we didn’t know how to look after our baby and that we had a 200+ page manual and hospital training to get through.
Since then we regularly feel overwhelmed with the never ending nature of diabetes. We don’t get to have a break from it. Noah’s pump likes to make a point out of this most nights by alarming us after we’ve put him to bed, and try to sit down to eat or just as we’re getting into bed!
Then there’s being terrified of bad hypos, especially that worry that the pump won’t pick up on the hypo and won’t alarm in time. Our solution is to calibrate before bed and set alarms to check if we’re not confident in the sensor. And also to have the baby monitor loud enough to pick up on Noah’s breathing – daddy is a light sleeper so he loves this, NOT.
We also feel so confused at times. We’ve lost count of the many times we mutter “I don’t understand” – when we’ve given insulin and his glucose levels continue to go up, or when he’s had glucose but it’s not working, or when we’ve done the same thing as yesterday but it’s not working today.
We regularly get frustrated with ourselves and each other, especially at night time when we’re trying to make a decision in the middle of the night – How much insulin? All in one dose? Shall we increase his temporary basal?
There’s also a sense of loss for life pre-type 1. It’s easy to look at life before diabetes with rose-tinted glasses, especially as most of it was spent on maternity leave and enjoying being new parents.
At a new type 1 parents’ event we were told that we will regularly go through the stages of grief – denial, anger, bargaining, depression, acceptance. This is so true! We definitely have moments when we ask why this has happened to our baby, when we just want to take it away from him and onto ourselves, when it feels so hard that we don’t feel positive and can’t see a way forward, and then those lovely days when it feels manageable and just another part of life.
We’re slowly realizing that it’s ok to have these emotions and that we can’t bottle them up. It’s so easy to put on a front and pretend we’re coping fine, when at times over the past few years we haven’t been at all. We definitely feel like ducks at times – gliding on the surface but frantically paddling underneath the water to keep afloat.
Mummy recently went to see Pricks the Play by Jade Byrne with a friend who is also a type 1 mum. We’d spoken before about our fears and worries and then during the play all those emotions and worries were exemplified through Jade’s experience and sound bites from her parents. The show is an emotional journey through Jade’s life with Type 1 but it was reassuring that we’re not alone in all these emotions. If you haven’t seen Pricks yet I would definitely recommend going!
We’ve accepted that we can’t struggle by ourselves and that we need to ask for help. We are so blessed to have family and friends who want to help, and who want to understand how to look after Noah. It has been a huge adjustment as anyone looking after him HAS to be trained on how to use his pump and what to do and when to do it. We’ve also been really blessed with Noah’s nursery staff and amazing key worker who have been trained, and who we can trust to look after him well.
It’s really great being a part of the diabetes online community #GBDoc but seeing some of the struggles of adults with Type 1 can sometimes feel quite daunting and overwhelming when you think about what’s ahead for your one and a half year old. But we’re so thankful that so many people are so real about it and that we also get to see their daily triumphs. We’ve also been overwhelmed with the love and support we’ve found by being part of the diabetes community.
Type 1 is definitely making us stronger and hopefully more understanding and compassionate (even though we’re very tired!). And despite it all Noah rarely stops smiling and is such a blessing.
#ItsOkToNotBeOk
We blog on https://hypobaby.wordpress.com, use the Twitter handle @baby_hypo, and use the Instagram handle @wattsman10_hypodaddy
My main piece of advice for a parent with a child newly diagnosed with T1D would be to use the diabetes community online to ask questions and learn. In the middle of the night when your child is having a hypo, it’s tough and usually within the community, someone is there to help and talk you through things. Remember you can’t do everything on your own! I think that’s also a positive aspect too. I have met so many people and learned so much through the online community.
Neither myself or my wife are diabetic so we don’t know what hypers and hypos feel like, and it’s tough knowing what he is going through but not having the experience to back it.
Luke Watts
This is Noah, he’s three. He’s had #TypeOneDiabetes for two years now and is smashing it. We are under the care of St. James Teaching Hospital in Leeds, England.
