Tag Archives: support

Big Brother

19 Feb

It has come to my attention that it is not unusual in my house that we all pull together. This is incredibly noticeable with my elder son Meical, aged 8. Since Jac was diagnosed with his Diabetes 21 months ago (I can’t quite believe we are nearly at the 2 year mark…..what a lot we have learnt in that time!) Meical has been amazing right from the word go. He very quickly learnt how to check Jac’s blood glucose, under supervision of course, and would also be a third pair of eyes in watching Jac to look out for hypo signs. He has cleverly learnt how to count carbohydrates (it is necessary to count all carbs to  be able to dose insulin for food) He also has had to put up with various different behaviors from Jac, as when his blood is high or low he can get a little ‘temperamental’ shall we say!

It is very apparent how much we rely on him sometimes as often when we are driving in the car a mournful little voice will pop up from the back and say “Mum, I don’t feel well” This is our cue to test him there and then as it could be an indicator that Jac’s glucose may be high or low and he could need glucose or insulin immediately. Not such an easy feat to do the test and administer what you need when you are doing 70 mph on the motorway with no service station in sight! So then we pass over the medicine bag to Amazing Big Brother who tests, tells us the number and either sorts the jelly babies out or gives the correction insulin dose via Jac’s clever insulin pump. What a star! I often tell him how brilliant he is and I hope he knows it!

Enjoying the recent snow

My attention was also drawn this week as to how much Jac must be always conscious about his Diabetes. Last night when I went in to do one of his night glucose tests his blood was very high, so his glucose machine did it’s warning alarm to alert to the high reading. Jac stirred a little in his sleep, and murmured sleepily “Am I high or low Mummy?”

I replied ” You’re a bit high”

He responded  “Would you sort out the insulin Mum? I’m tired.”

“Of course I will darling, you go to sleep”

“Thank you Mummy, love you”

All this and he is still only 4 years old.

My gorgeous boys…..


Happy and Sad Times

1 Oct

Well, I beat the Education Board! I will be honest, they stood little chance against me since I am well aware of how awkward I am, and they were blissfully unaware! Although I have to admit that even I had my doubts when faced with knock back after knock back. That saying, I think they just got fed up with my phoning their offices 3 times a day, and not just annoying one person but quite a few!. I learnt that the more people I spoke to, the more names they threw at me, so I would get their phone numbers also and phone them as well. I can only imagine their office. In my mind it’s an open plan design and when they answer the phone and I tell them who I am they would roll their eyes and pass me over to the next unsuspecting person. Literally 3 times a day for weeks on end to get extra support for my child who has a long-term chronic illness. What a joke. In the end though I did get to speak to people who were totally supportive and understanding of Jac’s needs. Funnily enough by the time it got to go to the panel meeting I think they were that sick of hearing my name that Jac’s case got approved easily,  Yay and high-five to myself! Jac got approved for 2 hours support every day while he is at pre- school.  A proud moment for my self- esteem as I would normally hide in a corner rather than speak out, but when it comes to my children then I guess I surprised myself! Unfortunately this seems to be a battle that I will face every year until Jac is able to be in control of his own diabetes, which they seem to think will be around aged 8, but I’m not sure when it will be. Is it really fair to ask an 8-year-old to look after his diabetes and long term health? Is this a concern that he needs as a child? Surely it is up to the adults in his life to ensure he is safe and well rather than him have to act like an adult and grow up before his time.

At the same time as all the stress of this was going on, it was also a sad time in our family. My Grandpa (at the grand age of 89) suddenly got very poorly and sadly passed away. It was a shock as he had been relatively healthy up to that point, but he suffered an aneurism in his heart, got poorly, and died within 24 hours of first getting ill. For him it was the best way to go. He would have hated to get ill and have to rely on people as he was so independent. It was also a big coincidence that my mum had gone over to his house (3 hours away) for a surprise visit , but what an amazing relief that she had. She was with him from the first feeling of illness to the last. Hard for her, but what a relief that he hadn’t had to be on his own, confused and in pain. He had his eldest daughter with him and I know that he would have been comforted by this. When he had passed away my mum (who is qualified as a Licensed Reader) was able to be with him immediately after dying and hold a little service and prayers. This would have meant the world to him and I am so grateful that this was done for him. Grandpa’s funeral was also taken by my mother at his request and was incredibly emotional. His wishes were for a particular hymn to be sung, and at this exact time in the service when the organ started playing, the heavens opened and the rain absolutely pelted down. Probably coincidence…..but you can’t help but think it was him saying goodbye. He was such a charismatic man and will be sorely missed. I can’t even begin to picture the following Christmas without him there, we will certainly be thinking of him and missing him always. It was lovely to see all the family at the funeral as we never get to meet together, but it was strange without Grandpa with us. We certainly gave him a good send off and I think there were a few hangovers the next day, mine included!

And so we continue, always remembering what we have lost.

I count my blessings every day for my gorgeous family, wonderful friends, and our happy lives. May it be long and joyful!

Support and the Education Board (It’s a shame they are not related!)

5 Aug

Well, so much for my uneventful couple of weeks! So far Jac has had random high numbers with blood in his cannula a few times, he has had massive mood changes due to the high bloods, with tearfulness and rages, mixed in with a desperate need for cuddles with me his mum. His big brother Meical has also been diagnosed with shingles near and in his eyes and has 5 different medications for this. Now we have to watch for all the complications for Meical that could come from shingles, and be aware in case Jac gets chicken pox from Meical’s shingles. It never seems to be easy! Just when you think you have things on an even level something always happens to throw a spanner in the works.

He loves his t-shirt from the Diabetes Uk Cymru family day in Bangor!

We have also just heard that Jac’s appeal for extra funding at school has been turned down by our local council. It would seem that they expect him at 3 years old to deal with his own diabetes, check his own glucose level and deal with possibly incredibly debilitating low blood sugar levels. I know that the school would never let this happen, and are going to do their best to learn how to care for Jac, but how on earth can someone who is uneducated in Type 1 Diabetes possibly make the decision that Jac is unentitled to extra help? The education board that made this decision must be crazy! I would love to meet them in person and give them a lecture of how our lives are now structured. My family life is amazing and I love my boys so much, but if people realised that everything we do is based around Jac’s health needs they might realise that it is not easy, and every minute of every day is a challenge. We have to judge Jac’s glucose levels, if he is high we give extra insulin and because of the high levels he may feel moody and irritable, if he is low we give glucose and he may feel tired,  groggy and poorly. We also need to make sure Meical is involved and has his own special time without him feeling left out. Wherever we are and whatever we do, we are always watching for signs of strange behaviour from Jac, to alert us to fluctuating blood glucose levels. But how can the council say he doesn’t need help is beyond me! I now have to mentally prepare myself to fight them to help Jac when I’m not feeling particularly boisterous at the moment.

Which brings me to another subject of support. I come from a relatively small family, and only have my mum living close by. My husband is also from a small family, and his parents both passed away when he was a teenager. So that leaves us in the position of only having my mum to care for the 2 boys when I need to go to work , or to sometimes  have a rare night off! But I would like to give thanks for my mum, because she understands how much pressure we are under, and she also knows how important it is for myself and Michael to have a night to ourselves to have a chance to catch up on some sleep! She has learnt how to carbohydrate count and to programme Jac’s pump with his insulin needs, so that for once a month (or more sometimes!) she has the boys sleep over at her house, and myself and Michael go for dinner, drink too much wine and sleeeeeeep! (albeit with the phone next to the bed for any problems that might happen,)So, I would like to say a big thank you to my mum for being there for us. We have no one else to help and appreciate the effort she makes for us.

We have a big trip down south planned for a couple of weeks time, so lets hope we manage to deal with that and everybody is healthy by then……

Support for the family from my mum