Coeliac / Gluten Free, Type 1 Diabetes

It’s not easy having a sibling with an illness!

In a family where one child has a long term illness, you quite often hear of the child’s bravery and tenacity or the parent’s devotion and dedication. People are quick to heap praise on the patient and their caregivers.

The forgotten “victim”, for want of a better word, is the sibling.

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Because the truth is, however much we try to limit the impact of Fin’s illness on the family, it is there every day and we can never really switch off.

It’s there when his CGM alarms that he is high or low and we have to stop what we are doing to treat him immediately.

It’s there at 3am when I have to wake him up to drink apple juice.

It’s there at every meal time, when the carbohydrates for every element of his meal have to be calculated and insulin administered.

It’s there when they have to cut short their time playing cricket and rugby as Fin feels shaky.

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It’s there when we go out for meals and have to try and guesstimate the carbohydrates in the meal as well as ensuring it’s gluten free.

It’s there when we go to the supermarket and have to check the packaging of anything that we need to buy.

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It’s there when we have to prick his finger 3 or 4 times a day.

It’s there when we have to change his cannula every 3 days and the sensor under his skin every 7 days.

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It’s there in every rugby match where we have to give “free carbs” before the game to ensure his bloods don’t dip too low and remove his insulin pump so it doesn’t get damaged.

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In a nutshell, as much as we try to stop his illnesses impacting on our lives, it is inevitable that they do.

I’ve lost count of the times Cian has asked for a chocolate bar in front of Fin and I have snapped at him because Fin’s bloods are stupidly high and he is unable to eat anything without them worsening.

Or the times where he has asked for something that isn’t gluten free and is made to eat it in the kitchen so Fin doesn’t see.

On occasions, when Fin’s bloods have been appalling for days and I am poring over his pump and CGM downloads trying to figure out what I need to do to fix things, Cian may come in and ask me to help him with his homework or try to talk to me about his day and I say “Give me a minute!” which inevitably turns out to be longer.

Or he will try and talk to me as I am drawing up insulin and whilst I am trying so hard to listen, the fact is that the job in hand is life or death and ultimately has to have my utmost attention.

I see the guilt in his face when he mentions that he really wants a dessert in a restaurant that isn’t gluten free and then seeing Fin’s face, will change his mind and have something else despite us both telling him it’s fine.

I see that some mornings he is tired after being woken up on numerous occasions through the night due to Fin’s CGM alarming that his bloods are low.

Or some days, when I am exhausted from nights of broken sleep, I realise I am simply not the mother that he needs me to be on occasions.

But most of all, I see that despite all this, instead of feeling resentful, he is simply sad that he has to watch his little brother go through all that he does.

I’ve no doubt that sometimes he feels left out or gets frustrated that I never seem to be giving him 100% of my attention but he never ever complains and is, quite frankly, the nicest child I have ever known.

He is kind, caring, loving and supportive and quite often when I am in tears because I simply can’t get Fin’s bloods in a decent range, he will put his arms around me and tell me I am doing a brilliant job and that none of this is my fault.

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When I accidentally put the wrong sandwiches in their packed lunches, meaning Fin had inadvertently eaten gluten, Cian was the one comforting me when I was crying that I had let them down, pointing out that Fin was absolutely fine despite eating them 4 hours earlier.

When I am ill or tired, he is always the one to ask me how I’m feeling and is the first one to welcome me as I walk through the door from work every day with a kiss and a hug.

Whenever, we take them for a day out or on holiday, he is always the one thanking us when we get back for giving them such a good life.

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If they are off playing and Fin feels low, it is Cian who runs back to the caravan to get me or pick up some Lucozade.

If Fin is upset about all that he has wrong with him, it’s Cian who will sit with him and cheer him up by telling him all the things that he is still able to do and reassure him that Type 1 doesn’t stop him doing anything.

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When Fin moved from injections to the pump and was scared of having his cannula inserted, Cian, at the age of 6, offered to have one first to reassure him.

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And at 3am, when I’m trying to make Fin drink apple juice, it’s Cian who will mumble from the top bunk to ask if he is ok.

Last week, we went to Cian’s first family assembly in Secondary School and he was chosen as the Pupil of the Year out of 265 children. He won the award not only for his academic and extra curricular achievements, but for his kind and caring nature and his willingness to help others with their work.

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And as I heard the Headteacher talking about my little boy and him being described as “the heartbeat of the school”, I sat there with tears rolling down my cheeks and thought to myself that whilst our lives are certainly not perfect, we must be doing something right!

Wiseman's Bridge Inn (23)

Beth

xx

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