Why? Why us? Why him? Why now? Why? This is all I can think about. My beautiful boy was diagnosed with Type 1 Diabetes on 19th February 2016, out of the blue, a complete shock to us all, most of all him.
All I hear this week are the old favourites – “these things happen” “its just bad luck” “things will get easier”, I understand all of this but why us? We work hard, take care of our family, live a healthy lifestyle, surely these things should have safeguarded us from the dreaded uncontrollable? Surely we have done enough to make sure that this won’t happen? Apparently not. Perhaps I should be saying “Why not?” Perhaps we are best equipped to deal with this? Perhaps we are tough enough? Maybe we are the ideal candidates? I just can’t make sense of it all at the moment.
This week has been like having a new baby again, total consumption. Complete focus on one thing and inability to think about anything else. The lack of sleep, either due to checking his blood glucose or due to the million thoughts in my brain, means that we seem to move from day to day without realising and all of our tempers are fraying round the edges rapidly. Still, as parents, we MUST set the example and teach our children that we CAN deal with this and that it will be OK. Tricky.
Recently I’ve felt as though we had gained some time and freedom back into our lives after the “baby stage” but I now feel that it has been swiftly stolen from us as quickly as the diagnosis was made. Meal planning seems a real chore and the worry of miscalculating carbs and therefore either under or over dosing the insulin is a constant worry. Will we ever eat out again? Will we ever confidently leave the house? I refuse to let this compromise our hard earned lifestyle. I just need to work out how.
I realise, despite my constant challenges and questions that there is light at the end of the tunnel. Bobby volunteered to take his own blood glucose last night and happily took his injection thereafter. He has engaged his big sister into the process and has begun conversations about what he can do to help research and when will there be a cure. Whilst I realise that for now, these are all red herrings, thrown in by him only to be snatched away again and that the now expected fight and defiance at “injection time” may well resume. But for how long? A week feels much longer than it is. I can see that eventually this will be “normal life” for us, but when? My impatience and competitive streak means I can’t just wait for these things to happen, I need action, progress and above all a bit of hope.
One week down, the rest of our lives to look forward to, and if this week is proof of one thing, its how we can be inspired by our children. What a difference a week makes! I’m nervous and apprehensive but positive about what this week will bring, albeit back to school and routine. One step at a time, one foot in front of the other. Do one Diabetes.
#doonediabetes 
Hi Sophie, Lindsay’s friend Laura here. I’m not too sure where to start as it all seems so many years ago now (which it was!). Take advantage of the ‘honeymoon’ period and try to learn as much as possible in that time. You will adapt and it will become part of your normal life eventually. Bobby will resent it as he gets older but whilst you have the control over it it shouldn’t change your life too much, especially for the first year or so. His blood sugar levels should pretty much do what they should do with the right amount of food – insulin ect. Time will teach you all how to deal with things. Yes it is so daunting, I remember thinking ‘surely only overweight or old people have diabetes!’ how wrong was I, there’s nothing of my daughter! And you will get ignorant people who will ask if you gave your child too many sweets!! I’m happy you don’t have the teenage girl hormonal period stage to go through but I’m sure you’ll have your own obstacles along the way. Coming from another parent all I can say is just carry on being you, his mum through the good times and the bad, if you need any support or have any questions please don’t hesitate to ask. I tended to stay away from diabetic forums as it’s a postcode lottery to what our children recieve. One lady who’s daughter was diagnosed a year was saying her daughter had a pump but mine has been waiting years for one so I tend to take things one day at a time, take up carb counting. Your hospital should advise you when they have sessions. Make sure the school is supportive because there will be a time when he will have to inject at school too. Also please don’t Google as that will give you too much info if you catch my drift! Laura X
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Thanks for getting in touch Laura, great to hear from you. I fully intend on keeping our lives the same, lifestyle etc, just got add in these bloody jabs along the way!! Keep in touch, whilst i too don’t like the forums, its nice to have a few like minded souls to rent to now and again!! thanks, Soph
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Hi Sophie. This is heartbreaking to read. I really feel for you and i understand this must be really hard. A friend of ours who is on Facebook was diagnosed with T1 diabetes only a couple of years ago. It amazes me how she has got her head around the whole science bit. I don’t even understand her Facebook posts. She is running two marathons this year and the way she is fuelling her body is inspirational. She makes all these gorgeous sweet treats that her whole family enjoy, using natural foods. She eats out often, goes on holiday etc. I am sure she would speak to you, mum to mum and give you some advice and tips. You may even know her. She’s and Old Town girl called Kerry Snell. Contact her.
Lots of love
Tracy X (and Liam)
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Thanks so much tracy! Kerry found me on Facebook and we are in touch, I’ll definitely be catching up with her to learn some recipes!! Hope you are all well, Soph x
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Sophie, you are absolutely right: you and Andy(and the rest of the family) are the absolute candidates for this to happen. You are strong and will get through this s*%t time. You will eat out again. You will go out again. You will get your freedom back. Just hang in there. X
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Hi Sophie, my name is Silke I’m sister in law to Paula she asked me to offer any help I possibly could. My boy Cam was diagnosed 20th July 2014 he was just over 2 years old and got sick really quickly. After diagnosis, a short stint in intensive care, a week on the ward we were let back home and in between the constant unexpected crying we had to get on with life. Today Paula wrote to me and I cried again imagining how you are your son are feeling and I cried again at the memory of that day and week. It sucks, everyday it sucks but annoying as it is to say, it does get easier. I know I spent a long time back then wondering if it was my fault, if I should have picked up on something sooner, if I had eaten too much sugar when pregnant etc etc etc. Now we have Cam on an insulin pump, since April, and life has definitely improved for us as we have all adjusted in the family in different ways. Cam has also just started school which has been a whole new level of worry for me, but not quite 4 year old Cam has taken it in his stride showing or telling his teachers what to do. His EA even commented on Friday that he is remarkable and we (adults) could learn a thing or two from him, perhaps having diabetes has made him a nicer person, who knows! I still get excited when hearing about any advancement in the technology or research for diabetes, my husband gets cross with me, but at least something is being done and it is well funded all over the world.
I have rambled quite a lot and I’m not entirely sure now I’ve started typing where I wanted to go with my reply to your post, only to say that I feel your pain, I understand your grief, a small part of your son’s health has been compromised and it’s ok to grieve for it, that’s what the social worker at the hospital told me anyway and I think it did help a little. I sincerely hope I have offered some tiny form of help, I am always happy to talk about diabetes with anyone, I bore my family and friends with it constantly but it is our life, we are a family with diabetes, and if I can help your family at all I would be glad.
Anyway enough ramble, you can find me through Paula’s fb Silke ballhausen, I would love to hear from you.
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Hi Silke, thank you so much for getting in touch with me. its so good to hear from someone who understands what we are going through as a family. You are right, it is a grief process a bit, which sounds awful I know! One week in, we are just mastering the injections but bobby resists a lot which makes it even harder. I am going on a course in a couple of weeks to learn more about the pumps and to see if i think it could work for us. your message has made me feel so much better, that we are not alone!! Please do keep in touch, and any tips or advice are always welcome!! Sophie x
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Hi Sophie, my sister in law passed this on to me. So sorry to hear about your son Bobby. Our son was diagnosed 18 months ago just after he turned 2 and I just want to let you know….I know how you are feeling, those first months were a blur of feeling numb and, as others have said,in many ways it is a bit of a grieving process that your ‘perfect’ child now has a condition that you wish with all your heart and soul you could take from them. I think it’s important not to feel guilty that you are grieving cause it is a really tough pill to swallow and there is no doubt it is 24/7 but on the positive side these kids are soooo amazing at how they adapt and so often amaze me at how accepting they are. The times I have always wanted to cry the most are in disbelief when HE turns round and tells ME it’s ok!!! (“It’s ok mum, that didn’t hurt” or “well done mum, that was a good injection!!!””) You will have such a new found respect and love for your super brave soldier!!!i know you mentioned about injections…. I’m sure you have tried various things but I know what it was like that first little while….we tried to make our main focus on letting him become familiar with them, some silly little things that we found helped were…we never call them injections, we give them a funny little name which we always use to make it sound a bit less clinical and at the beginning we used to make a point of letting him do things himself like screw on the new needle( with us watching obviously), let him pretend to give it to his teddies etc just so he didn’t find it such a foreign/scary thing. Finlay was petrified in hospital when the nurses used to come up and then 2 of them would hold him down to inject him. They were using his stomach which was painful as he was so little and had no fat there, we changed it to his bum which he is much more comfortable with as there is so much more fatty tissue there. Pressing in or massaging the area for a second or two before hand also really helps. Maybe Check with your diabetic team if they have any smaller needles if you don’t already have the smallest. Maybe ask around and see if there are any child networks in your area who catch up…sometime it’s good for kids to see they are not the only one and for parents to be able to ask all those random little questions to other parents going through the same thing!!! you will be able to eat out again :)….restaurants, parties etc are all a bit daunting at first and you feel like the crazy lunatic mum inspecting the food on the party table but at the end of the day he’s a little boy and you don’t want to make him feel like the odd one out so especially on special occasions you can be a bit more lenient and let him eat a few treats and just adjust his insulin accordingly. There is no denying those first few months are intense and your emotions will be all over the place so maybe try find someone you can trust to look after him for a few hours so you and your husband can have a little bit of time out together. Sorry I have blabbed so so much, not sure any of this is of help but please know I’m thinking of you all and really hope that over the coming days,weeks and months you and your little guy are able to potter along through it together and show diabetes that you are in control of it and it is not in control of you!!
Eva xx
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Eva!! You understand!! Thank you so much!! You’ve made me see light at the end of the tunnel. I will try all your tips and report back soon. Please keep in touch and keep reading my blog! Much love, Sophie x
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Hi Sophie, I never realised you were so very eloquent. I have no experience of diabetes other than reading of so many people who have overcome it and lead lives that inspire set an incredible example. Your perfect little boy is still your perfect little boy and he will amaze you by how adaptable he is. Stay strong and please shout if you ever need a chat. Jason (Zurich) X
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i don’t now about eloquent!! Thank you for your support! Hope all well with your family x
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Aww I could have wrote this post myself 2 years ago. Totally agree about it being like bringing home a newborn all over again. Your competitive streak and impatience will drive you to learn as much as you can, they will be a huge asset. As for when it gets easier…little milestones I guess, the first of course is when it’s not a battle to do the injections, we had a big shift when we moved to an insulin pump after 4 months, he was so much happier, finally I guess as some point I moved on from just focusing on trying to cope with it all, the anger disappeared, and somewhere along the way some kind of acceptance settled on me. Though I can’t say when that happened, perhaps a gradual process. Good luck it sounds like you are doing a great job.
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Thankyou Andrea!! So lovely to hear from you and great that you understand! I am going to learn about a pump next week as i think it could be great for us. Which type do you use? xx
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Hi Sophie,
Reading your blog was like reading about my own son! Seb was diagnosed in Nov 2015. He too is 5.
You have my complete sympathy and I’m so sorry this has happened to your family. I say family as this will affect you all. There will be some challenging days and weeks to come. Just when you think you’ve got it, the dreaded D will throw you a curve ball. But you are strong enough to deal with whatever it gives you. Your son already is, and will continue to be your inspiration.
We have just passed the 3 month stage and we haven’t let the T1D stop us doing anything. Seb still swims and plays rugby (although I will say the soft play hypo I still haven’t mastered!). We have a fantastic team around us and hopefully you have too!! If you need a shoulder to cry on, or anything like that just give me a shout!
Good luck and stay strong!
Lynne X
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Hi Lynne!! Thankyou for getting in touch and for understanding! we had our clinic appt today and the docs were super impressed with bobby’s stats this week so i feel renewed hope!! i hope things are going well for you all? i’m going to keep my blog going so please keep in touch!! Sophie xx
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Hi Sophie, Faye’s friend Laura here – I’m a Dietitian – I don’t have anything to do with paediatric diabetes unfortunately so I asked my colleague who does for advice. She says:
1. Use the specialist diabetes team as much as you need them. Don’t be afraid of calling, apparently some parents call 2-3 times a day initially, and that’s absolutely fine (for me as a clinician, I hate it when people don’t call because ‘they don’t want to bother me’ – it’s my job!)
2. It’s a very stressful time for parents, but they do get through it – perhaps see if the team can put you in touch with other parents in the same boat?
3. Diabetes UK website is also a useful resource
It looks like several people have mentioned these kind of things already on a much more personal level, but I hope this helps, I can certainly ask if you have any other questions. All the best for the future 🙂 x
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Hiya, I’m Jodie and my little boy Micah was diagnosed T1 almost 1 year ago (25th March is d day!) He was 7 years old. It’s really bloody tough I know. I just wanted you to know you’re not alone. I completely understand what you’re going through. A year in an it’s almost as though I don’t remember life before D came along. Keep strong, things will become normal again, just a different kind of normal! xxx
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Thankyou Jodie! Great to hear from you and to hear that you are doing well. We are getting better each day but still so tough!! Whereabouts are you? Sophie
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Everything you’ve written is exactly how we all feel when our children are diagnosed. It is the most incredible grief. It’s a really tough time coming to terms with it, but you will. You sound much like me. I was so determined diabetes wouldn’t ruin our lives that we’ve probably done way more stuff than we would have done without it, just to prove we can! She’s a lucky girl, and I’m a lot greyer for it, but it’s so worth it to see her thrive.
One tiny bit of advice at this early stage. Don’t stress too much about food. This isn’t about food, it’s about insulin. I went mad for a while trying to cook things I wouldn’t normally, and limiting foods. It just made life harder and more depressing for her. Really learn your carbs, and with a bit of fiddling here and there he can eat pretty much anything he wants.
Good luck with it all but you don’t need it; it sounds like you’ll do absolutely fine with this 🙂
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