Hi Andree
So sorry to hear your story. It's almost 2 years to the day that I was there with my son, facing a Type 1 diabetes diagnosis. My son was older, 15 almost 16, but it doesn't make it any easier as a parent. It's a massive thing to have to deal with for the whole family. You will be on a real emotional rollercoaster at the moment. All the comings and goings of the first few weeks take you into a whole new world you didn't know existed. I said, bringing my son home from hospital was like bringing home a brand new baby all over again, so scared something would go wrong and the safety net of all the doctors and nurses was gone, despite having 24 hour phone numbers. It was horrible.
My advice to you at this stage would be 'just go with the flow'. If you are feeling pretty strong emotionally at the moment but your partner is falling apart, watch out, the roles WILL reverse at some point. We both had meltdowns at different times. We had nurses phoning us twice a day for a start as it was Christmas/New Year and they were running on skeleton staff. Just talking to one of those had me in floods of tears one day, it came out of nowhere.
Your son is doing amazingly well if he is testing and injecting my himself already. My lad had a massive needle phobia and I knew it was going to be a big deal, but right from the second injection he took it all on board and did it himself.
My advice to you would be don't hold back your feelings, and don't let your husband or son hide theirs either. Talking is good therapy in itself. You will have to deal with the school next week. Don't send your son back until you are sure either your nurse or you yourself are able to go in and talk to them and find out what knowledge they have or help they are prepared to put in place. At the very least they will need to be able to recognise hypo symptoms and be able to help him if necessary. You will need to provide some hypo supplies to be kept at school too. Your child probably hasn't had a hypo yet though. At least at the age your child is they are better looked after than at secondary school. That really was scary with my lad, with assurances that all teachers had been informed, when in fact it meant they had all been sent an email by one person, but most of them hadn't bothered to read it!
Thinking back, the one thing that really freaked us out as a family was the thought of a hypo. I think we all imagined our son would instantly collapse unconscious in a heap on the floor in front of us. We were all scared stiff what would happen. I don't know if you team have told you about that yet (I would imagine they have) and though it wasn't pleasant for either him or us, we did recognise his first one, all of us. He turned deathly white, got the shakes, said his legs felt wobbly, felt a bit sick, it was very obvious something was wrong. He tested, and was below 4. In the early days we kept Coke in to treat it, and it worked very quickly. Now he prefers dextrose tablets.
If there is anything that scares you, or anything you are unsure about, please come on here and ask. People are brilliant. I have learnt so much more from on here than anywhere else. People here are living with it every day and have so much experience, real life experience, even better than nurses or doctors can often tell you.
My son did go through massive anxiety issues early on too, scared to leave the house. For a start its remembering to take all the paraphenalia with you, but it soon becomes second nature. I found a pencil case with 2 compartments was good to keep his meter, pens, spare needles, strips etc in, and a pack of dextrose tablets and a cereal bar. He put that in his backpack each morning and re-stocked it each night. If you son will be injecting at school too, it may be a good idea to leave some spare needles with the office or his class teacher too. I remember being called to school (quite some hike away) in the early days as my son had his pens, but had forgotten needles!
The early weeks are tough on all of you as a family. Your son has a massive lifestyle change to take on board, but so do you too. I saw my son as fragile in the early weeks - months even - but now I come to realise he's just like all his mates. Life does go on, and he's still the same boy.
Good luck with it all. Do keep coming on here and posting, you will get some fantastic support.
Tina