Monthly Archives: May 2016

Dear Arlo 


Dear Arlo

I hope when your older and you read this blog you have finally come to terms with being a pretty amazing boy who is brave and makes us proud every second of the day. You will have crappy days and you have had some pretty crappy days . You are 6 now as I write this and there have been times where we have had to scoop you up both physically and emotionally from the bottom of the floor that you have sank into and tell you everything will be ok .

Last night was one of those nights . Having our pillow talk you turned around and asked me why you couldn’t be normal like all your friends . You hated your pump at nights and couldn’t get comfortable lying down. Through tears you said the one thing that you wished you could do more  than anything in the world was to eat something without having to think first or ask. Through sobs you said that you hated being different to everyone else at school you  wanted to stand in line just like everyone else did.

You said you wanted a pancreas that worked.

I held back the tears and told you we are all different in our own ways and that the world would be a boring  place if we all the same. We have these conversations a lot and you feel better afterwards and tell me something nice that happened with your friends or at school.

 

You tell us most of the time your happy and you love your friends ,family and the dog we have named but not yet actually bought .( It’s Headley Hudson for those that are interested! )

What amazes me about you Arlo now aged 6 is that you are open and honest with us and whilst sometimes you may say things that break my heart you are telling us and your not bottling it up . I hope that we have taught you that things can feel a whole lot better if you talk about them . I hope that when you read this aged 16,17 or 18 that you are still open with us , your family and your friends . You will still have type 1 diabetes , you will still have crappy days .

I make no apologies Arlo Huxley Peace you will still be a  amazing brave boy who we are beyond proud of.

Love

Mummy and Daddy xxx

Our amazing team.

Diabetes blog week – Thursday’s topic. 

 Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!


I consider ourselves really lucky. When Arlo was first diagnosed in September,  the very next day we were met by a team of paediatric diabetes speicialist. I will never forget that first week I was walking around on a black cloud and in a black cloud beyond terrified of what the next week may entail let alone the future. 
I work in healthcare and have some experiences of dealing with hospital consultants . Some are great but sadly most of them float in on a ward round give you 5 mins and then any questions are answered by their team of doctors behind them. So I was sceptical at first that Arlo consultant would just be a name we would hear and rarely seen. How wrong was I . From day 2 our consultant sat with us sometimes in silence he didn’t budge he didn’t make any movements to leave … He sat , he talked and he listened . He talked honestly and openly and said he and his team were available at any time. 

Then came the nurses at the time there was two of them in that first week of being in hospital we spent some time with both of them. I will never forget one of the nurses putting her hand on my knee and saying ,

“Vic  you can still do everything you did you just going to have to stop winging it and be a bit more organised .”
Of course She was right  we pretty much do everything we used to )apart from sleepovers.) You do have to be organised and remain one step ahead of type 1 which I can’t tell you how exhausting it can be to never be able to switch off from it but there is also a element of “winging it.” 

We ended up being allocated to Mrs L the way clinic days worked and our days we naturally fell into the caseload of Mrs L. 

Mrs L has been our lifeline really – always there to help us on a crisis and always ensuring we know what to do when she is away . I could go on forever about how amazing Mrs L has been and then rest of the team but the most important thing Mrs L has done for us is empowered us to have the confidence to deal with the day to day managing of diabetes and those  crisis moments .

When I told Arlo about my job one of the the first things he asked was if I was going to be an important nurse like Mrs L! To Arlo Mrs L is a superheroe in some ways she is . 

Our team doesn’t stop here we have access to dietician’s and counsellors which are available to use at anytime. 

Clinic appointment s are a chance to for us all to get together – Arlo hates these appointments and never stays in the room. He hates people talking about him and hates being called brave. 

He always asks the same question at the ends to our consultant .

“When will my diabetes go”

The consultant always replies with , 

” that’s a very good question , the scientists are busy working to find a cure and hopefully when your older that might happen.” 
I hope and pray that this is the case. 

The Peace gang including Arlo will be running on June 11th to raise money for the JRDF charity which works really hard and trying to find a cure . 

Please click on link to sponsor us all. 

http://www.justgiving.com/alongcametype1?utm_id27
Just giving / along came type 1