I can.........

This is my first blog as part of 'Diabetes Blog Week', I don't actually know how I stumbled across it, but  here I am. The first topic is 'I can....' and it is looking at the positive side of our lives living with diabetes. Straight away I am stuck, it's tricky as I write about being a parent of a child with type 1 diabetes, I don't have diabetes myself.
I try really hard not to let this condition get in the way of my sons day to day life. He is 10 years old, he needs to be able to live as a 10 year old boy. He needs to be able to play football, run around outside, wrestle with his sisters, and for the most part he does. At the moment it's my job to worry about all things diabetes not his.
I have always said to him that there is nothing he can't do if he really wants to, yes having diabetes sometimes complicates things, but with forward planning most things are possible. He amazes everyday, especially when he is at school. When he was first diagnosed I trawled the Internet for information, I joined forums to find families like mine. The biggest thing that stood out for me was the talk of problems at school. It wasn't just would he be looked after well enough, he wasn't, and still isn't always hypo aware. The thing that jumped out at me more was that many of the children had 'statements', they had 1 to 1 help, they struggled at school. This was something I hadn't planned on,  I didn't want him to be labelled as special needs.
Samuel does extremely well at school, at every parents evening I get told that he is above where he should be, that he doesn't let his diabetes get in the way. He has no issues with concentrating, even when his levels are out of range. He loves all aspects of learning, he also has a great bunch of friends around him, they have all accepted that diabetes is part of who he is, they look out for him.
I suppose that a positive of him having diabetes is that every three months he gets a MOT, a health check. He is weighed, his height is measured, his blood pressure is checked, and once a year he has a whole host of bloods taken. My three girls don't get these checks.
Diabetes has also given us a great network of friends both online and in real life. They 'get it', day or night you can always find someone online with advice. They are a godsend, especially in the early days.
For me personally, diabetes has given me the ability to run. Before he was diagnosed I was overweight, unfit, and could not run at all. I couldn't run on a treadmill for more than a length of a song, and I couldn't see why anyone would do it for fun!! I entered the London Marathon.....don't ask, and ended up with a place on the JDRF team. I ran it (I use the term run very loosely) in 2010. Since then I have completed 1 ultra marathon, 8 full marathons, several half marathons and countless 10k and 5k races.
I've lost weight and I'm fitter now at the grand old age of 40 than I have ever been.
We have a lot to be thankful for.

The First Sleepover

The day has arrived, I've been waiting for this day since Samuel was diagnosed in 2009. It's the day that every parent of a child with type1 diabetes dreads.........'the first sleepover!!'
Now, I'm the first to admit I'm fairly laid back when it comes to Samuels diabetes. He doesn't get asked often, but when he is invited to his friends for dinner or to play I always say yes. I find out before hand what dinner will be and I work out the carbs so that Samuel can enter into his pump.
Last year he went to the cinema for a friends birthday and he had a great time. There was a lot of carb guessing on my part but it went without a hitch. The way I see it these are isolated incidents, so if it results in some high readings then that's ok. It not all the time and I don't want him missing out on fun times with his friends, a bit of boy time. Remember he lives with three sisters, there isn't a lot of boy time in this house!
Samuel has been looking forward to this for the last week or so.......I haven't!
He got up this morning and packed his bag straight away as I'm sure all the other boys have. We have the onesie, the toothbrush, the clean underwear, the pillow and quilt..... Then of course the blood glucose machine, the ketone machine, spare strips for both machines, juice if he goes low. I did a set change last night and changed the battery in the pump.  I have complete faith in mum, he has been to this particular friends a few times. I think we are set!

Samuel will have a great time, I know he will..... I on the other hand will probably be a nervous wreck the whole night, and a few more grey hairs by morning.

A marvellous man.

I can't believe we are now in March of 2015, where does the time go? I haven't posted for an age!
Samuel had his quarterly checkup, we had to cancel the one before Christmas as it clashed with a school trip to the science museum, lets face it that is far more exciting to a 10 year old. We hadn't been since September, and during that time we had had the winter sickness bug, the school holidays, awful bg levels, and of course Christmas itself.
We get to clinic and we are both excited by this as we were meeting up with Samuels pump buddy, the gorgeous Kita and her equally gorgeous mum Magda. We hadn't managed to link up our appointments for ages. Samuels height and weight had both gone up, height by 3cms and he had put on 4lb. Ahhhhh it all becomes clear.. .that is why we have had awful levels. Samuel is called in to see his consultant. This man is a hero among families of children with diabetes. Prof Peter Hindmarsh, otherwise affectionately known as 'The Prof' . He takes one look at his pump and states all Samuels settings are out of date and need changing. Carb to insulin ratio adjusted, Basel rates adjusted, correction dose adjusted. We had a quick chat about the residential trip that is coming up and we were on our way. Oh, side point for those in the know the HbA1c came down!!!
I can honestly say in the four weeks since this appointment Samuels levels have been amazing they have never been so good The Prof is truly an amazing man. The other reason I love this man is that the appointments are all about Samuel, he takes the time to talk to Samuel. I get the boring letters through the post stating all the medical stuff, Samuel gets a letter thanking him for going to clinic and that he hopes he enjoyed the rest of the day, it is all very personal.
Ask anyone who has there child seen at UCLH by this man, or actually anyone who has a child with type 1 diabetes, about him and they will all say the same.

How God selects......

Not my words but I love this poem  HOW GOD SELECTS THE MOTHER OF A CHILD WITH DIABETES by Erma Bombeck Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. Did you ever wonder how mothers of children with diabetes are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger. “Armstrong, Beth, son. Patron Saint Matthew.” “Forrest, Marjorie, daughter. Patron Saint Cecilia.” “Rutledge, Carrie, twins. Patron Saint Gerard. He’s used to profanity.” Finally, He passes a name to an angel and smiles, “Give her a child with diabetes.” The angel is curious. “Why this one, God? She’s so happy.” “Exactly”, smiles God. “Could I give a child with diabetes to a mother who does not know laughter? That would be cruel.” “But has she the patience?” asks the angel. “I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that’s not going to be easy.” “But Lord, I don’t think she even believes in you.” God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.” The angel gasps. “Selfishness? Is that a virtue?” God nods. “If she cannot separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with less than perfect.” “She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side.” “And what about her patron saint?” asks the angel, his pen poised in mid air. God smiles. “A mirror will suffice.” ~By Erma Bombeck

Children In Need.

Pretty much everyone will be aware that Children In Need is on Friday. This annual event is broadcast across the country with many celebrities taking part.
Friday 14th November is also World Diabetes Day, a very important date in the calendars of families who are affected by type 1 diabetes. This is the birthday of Dr Frederick Banting....who is that? This is the great man who discovered insulin. It's important to point out that insulin is NOT a cure for type 1 diabetes, it's life support. Without it a person with type 1 diabetes will die! FACT.
The whole month of November is diabetes awareness month, how many of you knew? We know that October is breast cancer awareness month, and November is taken over by 'movember' to raise awareness for prostate cancer, but diabetes awareness?
I suppose really the point of this post is that our type 1 children are 'Children in Need' they live with this life threatening condition day in, day out. Currently there is no cure, hopefully one day this will change.

Hope is in a Cure x

5 years in......

Diaversary.......diagnosis day........d day, whatever you call it....we call it diabetic birthday, today is that day.
5 years ago today diabetes entered our lives again, Samuel was 4. If you follow my blog you will know this already but for those who are new to it I will give a quick recap. My husband was diagnosed at the age of 22, so thankfully when Samuel started showing signs we knew what we were dealing with. That said it was still a huge shock to us, and it was still a lot to take in. He was never admitted into hospital and he never got the chance to get really sick, for that I will always be thankful as many are not so lucky.
So here we are.... Lots has changed, we move from twice daily injections, to multiple daily injections and now the pump. Have things got easier? The short answer is no, nothing is ever easy where type 1 diabetes is concerned. What does happen though is it becomes normal, well normal to us anyway, we are used to carb counting, insulin measuring and blood glucose testing. We have gained great support from the CWD online community, we have met some wonderful people and I'm sure this will carry on for many years to come.
However, this year is tinged with sadness, this year we have tipped over and Samuel has been diabetic longer than he hasn't. He has spent more than half his life injecting insulin, more than half his life counting carbs and measuring bg levels, and if I'm honest it sucks. But this is the hand we have been dealt, Samuel is an awesome young man, he is shining at school and he doesn't let his condition stop him from doing anything so actually I think we are really quite lucky, as it really could be a whole lot worse.

Missing........Samuels hypo awareness!

It appears that Samuel has misplaced his hypo awareness, actually his hyper awareness seems to be lost as well. Saying that he never really has had much hyper awareness. I just know when he is high as he is more irritating than his usual 9 year old boy self. You know what it's like.....he won't listen, do as his told, jumping around more than usual, the attention span of a goldfish, and generally I have the strong urge to shake him! That or push him through a wall, but I'm not allowed to do that ;-)
He did however recognise the fact that he was going low. He couldn't really describe it he would 'just feel low'.
The other week though we were sitting down to dinner and I had asked him to test.....1.5!! This is the lowest bg we have had since diagnosis. Up until he saw the number he was fine, he was playing with his sisters, once he saw the machine this changed and he got all emotional. It shocked me because it seemed to come out of nowhere. He hadn't been to his usual Friday night swimming lesson, he hadn't been charging around the garden. The pump was functioning correctly, it was all very odd, and the fact that it dropped so low without him knowing concerns and scares me. If he doesn't realise he is hypo and he isn't wearing a sensor then we are leaving it up to someone else noticing that maybe he doesn't look quite right! This is a huge ask of someone.
Thankfully at school we have a few people who do notice if there is something not quite right. One of them has been with Samuel since the start and can read him really the well, she knows when he is low. The others can usually tell when he is high as he is more 'jumpy' and can't sit still.
There are not enough words to describe how grateful I am to these ladies, they do an amazing job keeping Samuel safe in school, and I have never had to be concerned about his health when he is there.
But...... If anyone does come across his hypo awareness could you please send it back this way, with it missing the whole diabetes thing is so much more complicated!!