Unless you live it

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1

I just need to get this off my chest.

Unless you LIVE with Type 1 Diabetes - you will NEVER completely understand how it infiltrates your life, the stress and sometimes very overwhelming feelings that come along with it.

Whether you have it yourself, a loved one or your child is affected. If you do not live with the daily ups, downs, worry & craziness you will never truly "get it"

It affects friendships - it affects siblings - it affects marriages - it affects finances and the entire family.

A diagnosis of Type 1 Diabetes - CHANGES YOU.

It has changed me as a person, as a spouse, as a mother

As a parent - all you want for your children is health and happiness

Type 1 Diabetes takes both of those things away regularly and it can be VERY difficult to stand by and watch it happen to your child and not be able to do a single thing to make it go away.

I have seen over and over - hurtful, rude and uneducated comments directed at D-familes and they hurt me too.

People who think it is as easy as just taking insulin and moving on.
People pushing magical cures that we should try.
People who think we shouldn't worry as much as we do and shouldn't bother checking on our children in the middle of the night.
People who think all we care about now is Diabetes.

T1D is a very complicated animal and is different for everyone. Even if in the D world - what works for one person or child or family may not work for another.

YES - I care one heck of a lot about Diabetes now

- because we fight it every.single.day.

Trying to keep Eden alive and as

healthy and happy as possible,

whilst at the same time trying to

teach her to one day do it all on her own.

At this stage of her life I want her to still be a kid - to take on some of the responsibilities of the disease but not all of them. I will shoulder the rest of it for her - I am her mother - just being a mother changes you as a person. Being the mother of a child with a lifelong, incurable illness adds a whole other dimension that you couldn't even possibly comprehend unless you lived it. I deal with the feelings as a parent - I don't even have a clue what it actually feels like to HAVE Type 1 Diabetes.

I am changed forever… our family is stronger for it…

If you do not currently live with D

- I hope you never truly understand what it is like.

http://edenseffort.wordpress.com/2014/07/30/unless-you-live-it/

2

wow this is powerful post! you do sum it up, this is kind of how I feel but I feel like perhaps I have been living with this 'beast' in our closet for longer than yourself it has been 5 and a half years for us and believe it or not it does get easier, you have a new normal, you and your daughter will be closer for it, you will both live more mindfully because mindfulness spreads, we must be mindful of carbs, insulin, exercise, sickness, etc so we become more mindful of everything else this can include a new appreciation for everything good, the beauty and resilience of your daughter. all her great non D qualities. yes no one will ever get what you go through, generally speaking most people are not empathetic so don't expect them to be if you need to vent about her D choose who you do that with, you will have a small circle that sort of get you and of course everyone at tu will get you. keep being the great super mom that I am sure you are. we can not change what is or know why we are moms of diabetic children we can not make this go away but we can ride the wave that live offers us with as much grace and love that we can. many blessings, amy

3

you are so right about everything you said
how can anyone understand us
hugs

4

A riveting, powerful write.

May I say also, as much as I identify with the sentiments of living with T1D, I was diagnosed late so had both an easier AND harder time with it -- and LADA stories are another ball of wax altogether.

But I cannot imagine the difficulty, pain, stress, anxiety and helplessness a parent of a T1D child endures. I consider you -- and all the parents of T1Ds -- to be unequivocal HEROES.

5

thanks

we are all heroes

hugs

6

AS a single parent of a T1D 11 y/o daughter, I agree with everything you said. As a matter of fact I got some unsolicited advice from two (2) folks at church this morning. I keep telling myself..."they're just trying to help... keep smiling."

Still looking for the perfect endo: T1D single parent of T1D child, heavy into sports, very willing to admit there's lots and lots that the docs don't understand, strong support for our taking control, doesn't pretend (s)he is providing treatment on a day to day basis, on top of current developments. Also, too, can walk on water.

BTW, have you tried a CGM. Not necessarily spot on, especially when BG changing fast, but usually helps with direction and rate of change. I sometimes get as much as four hours of sleep at time now, and can act almost human.

Best regards.