It’s now been six months since that awful day back in September 2015.
A lot has changed since then. It’s been a week of reflection, tears, anger and smiles as we look back on how things have changed for us in six months. We’ve learnt a lot since type 1 diabetes joined our family about ourselves, diabetes and life some good, some bad….
- It doesn’t get easier as time goes on:
Type 1 diabetes in children changes daily. You can never predict when it’s going to happen or what is going to happen. After a night of testing you wake up and analyse your data go over the carbs, food for the previous day, wonder if you did something wrong or if illness played a part. The truth is that’s just diabetes and it will never settle.
- Pumps are not the cure of diabetes:
You develop a love hate relationship with the insulin pump. Its function is to keep Arlo alive and drip insulin into his body twenty four hours a day. It stops the need for injections up to four to six times a day, and it stops Arlo legs getting infected injected sites. It doesn’t stop type one being there and it doesn’t let you forget. Watching your child play and catching a glimpse of the tubing or pump, catching the eye of a parent or child wondering what is wrong that child is heart-breaking.
- Arlo is a pretty amazing person:
I make no apologies for gushing about how truly amazing Arlo is on a daily basis. We like every other parent used to fret about his behaviour, his hatred of doing homework, was he behind at school? None of that matters now. Arlo has had to battle and deal with “grown up shit!” On a daily basis with his diabetes. He takes cannula changes and finger prick testing in his stride, he hates doing it but knows he has to. He knows now that if his levels are too low or too high come bedtime that we will be doing night testing. Arlo says that hypos feel like “I’ve got no bones in my body” and hypers feel like “I’ve got loads of gasses trying to escape from by body and all I can is run around and be manic to get them out!!” He hates being called brave. When he is having a really bad day he sobs “it’s so hard being brave all the time mummy!” He inspires us every day.
- You have to let go:
Every day I want to keep Arlo at home to protect him. Every day we want to stay in our Peace bubble. But instead every day we put on our smiles and let Arlo know that everything is ok. Arlo is bought up to be social, and to know that there is a whole world out there that is filled with family, friends and adventures. We say to him every day you can do whatever you want yet sometimes in the past six months we’ve not neseccarry been true to our word. Type 1 wasn’t part of the plan, neither was bringing up our boy in an environment where we constantly kept saying you can’t do that or having one of us constantly there to watch him when he was at afterschool clubs or parties. So little by little we’ve learnt to let go and trust Arlo & the people he is with.
- What matters is your health, family & friends :
Nothing else matters in the grand scheme of things. Since type 1 diabetes we have both left our jobs in London for jobs 10 mins away from where we live. We are close by to the school, and to Arlo when he is on play dates and we now spend most evenings eating dinner at the kitchen table the three of us at a reasonable time. We may not be earning big bucks but we are here for Arlo. We are despite everything very happy and ironically have found a much healthier, happier work life balance since type 1 diabetes came into our lives.
- There is Never a high five moment :
if you are lucky you may get a whole three days where levels have been good, carbs have been kind and you’ve not had to night but just as your about to high five and give yourself a pat on the back, sigh a big breath of relief something will happen and levels will go sky high or too low that dinner from two days ago that gave you perfect levels before and after is now making the levels go sky high. Half an hour of PE doesn’t affect the levels that much last week but this week you’re having hypos for 8 hours no matter how much insulin you’ve given. A cut to knee, a cold with a slight temp … yep you’ve guessed it back to square one. Growth hormones that list is endless. When you’ve racked your brains as to why this has happened, you’ve gone through the list in your heard, panicked called Mrs L the diabetic nurse and Penny you have to come to the conclusion that this is diabetes and without no rhyme or reason it can change just like that.
- You become experts at making it look easy:
Every single waking moment we are always five steps ahead of type 1 diabetes. I’ve predicted and planned for the occasions where there may be food, the treats come out on playdates. The stares from other as we do levels and pump. The comments that you learn not to get angry about because people are not unkind they are inquisitive. It is now an activity of normal daily living for us and even though we make it look easy it’s not.