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Chose a Bonus Prompt again today. Advice for Newly Diagnosed patients.
February 2007 – Sugarboy was diagnosed with Type 1 Diabetes
What was said (yes these things were said) – What I wish was said
It isn’t that hard – It ridiculously hard
It will get easier – It will never get easier, you will get better
At least it’s only diabetes – Diabetes sucks ass
He shouldn’t go back to school (mothers day out) – Get him back to what he knows
He should avoid sweets – He can eat everything anyone else can eat
Diabetes is a brittle disease – He can do everything anyone else can
Other things I wish someone shared with me:
- There are online communities of other parents and people with diabetes that will help keep you sane.
- Start teaching him right away how to care for himself – independence builds strength. (not suggesting someone give syringes to a 2-year-old – only suggesting involving every child in the decision-making process – how many carbs are in that? Oh you’re high, what should we do about that? You want to go ride your bike, what should we do first? etc.)
- Take care of yourself too – you can’t take care of your child if you end up sobbing uncontrollably in the fetal position on your floor. Take time for your friends, exercise, eat healthy, find others to chat with about D and NOT about D.
- Start a blog – it’s easy and it doesn’t have to be about getting noticed – it can be about clearing your head. A journal works too if you don’t want to put everything out in cyberspace. Keeping anger, frustration, and sadness bottled up can kill you slowly.
- Read diabetes blogs – not all will speak to you but there are countless blogs out there to choose from.
- Get plugged into Twitter and the Diabetes Online Community. Search #diabetes #DOC and #DSMA to get connected with others in the D community.
- Try to avoid becoming the sole diabetes care provider in your own home. Involve your spouse so you have a partner from the beginning. (not suggesting my dear husband isn’t a partner in care for our kids D – but I’m a bit of a control freak so he let me take the reins and I didn’t share all that I had to do – I got burned out and then breakdowns happen)
- Attend diabetes conferences if possible. It is a great way to meet other people with diabetes or parents of children with diabetes.
- Send your child with diabetes and if possible his/her siblings to diabetes camps. Being different is difficult and thus being at a camp (day or overnight) surrounded by others just like them does amazing things for their self-esteem and understanding.
- Don’t berate yourself too often or too much. Mistakes happen, meal boluses are occasionally missed, we occasionally sleep through 3am alarms, A1C’s fluctuate (hormones be damned), it’s ok to be sad, angry, frustrated and tired sometimes.
- Find laughter within the madness when you can.
So there you have it – my list of “I wish people had told me”. It’s taken me nearly 6 years to get here and I’m not done learning yet.