It Depends on your Environment...

So, I have been wondering if my experiences are similar to other siblings of a T1, or if my situation was unique.  What do I mean by that?  Well, MY memories of my childhood definitely are shaped by my sister being T1.  It seemed to always be there, SO stressful.  Getting to a restaurant for a 5:00 dinner reservation only to find we had to "wait" made my mom go into overdrive because my sister had already give her shot, which then made me panic.  I feel like I was always worrying and stressing in reaction to the situation.  EVERYTHING seemed like it was such a big deal.  Maybe that's just me?  But that's how I remember it.

The reason I ask this is due to some reflection recently on my husband's family.  He grew up the youngest of 5 children.  Four boys, one girl.  One of his brother's was born with lack of oxygen to the brain and is severely mentally challenged and now as an adult lives in a group home.  You would think that my husband would have really stressful memories about having such a sibling, and that it would have caused stress on his family.  But, it doesn't seem to.  His family seems to just "roll with it" and not sweat the small stuff.

So, was my experience more taxing because the personalities in my family were more prone to "panic" and escalation?  Potentially.  I don't feel like anyone ever sat me down and dealt with MY fears about it all.  I am not sure I was allowed to have any fears???  It wouldn't have been politically correct??

Probably sounds like obvious observations.  But, when you are so deep IN it, a PART of it....its harder to step back and "reflect".....

I am glad I am starting to...

Is it odd that this NEVER occurred to me???????

Don't ask me why TODAY, randomly, I considered my chances of developing Diabetes since my sister is T1.  But, today I did.....this is what I found:

Just who is at risk for developing type 1 diabetes? Here's a sampling of what Dr. Warram, a Lecturer in Epidemiology at Harvard School of Public Health, said is known:

• If an immediate relative (parent, brother, sister, son or daughter) has type 1 diabetes, one's risk of developing type 1 diabetes is 10 to 20 times the risk of the general population; your risk can go from 1 in 100 to roughly 1 in 10 or possibly higher, depending on which family member has the diabetes and when they developed it.
• If one child in a family has type 1 diabetes, their siblings have about a 1 in 10 risk of developing it by age 50.

Hmmm....I am 45.  But those are pretty interesting stats .....


So, does that mean I have 5 more years left of worry to beat this "stat"???  Shesh, I am glad I didn't know this earlier and spend ALL my time worrying....lol....

Always on my Mind...

Been a while since I posted, but, that's not to say Diabetes isn't always on my mind!  I was thinking one of these days that I should count the number of times I think about it a day.  Which, I guess is odd considering I don't have diabetes or live with my T1 sister anymore.  But, it hits me every day in almost everything I do.  I might be just randomly doing something like cleaning out a drawer and I'll have a memory about an insulin reaction my sister had growing up in which she was putting strange things in a drawer and that's how we realized she was low!  And, try as I might, I can't just let the memory pass without having "feelings" about it.  About how much my sister deals with and how I just don't know how she does it.  Then, sometimes I feel guilty that I got off so easy because I am not T1.

T1 is part of my identity.  It shaped me.  Trying to figure out what to "do" with that is the challenge....

Why Me....

You know what's weird??  I have never allowed myself to ask that question.  But, I feel like its sort of been a thought in the back of my mind.  Unspoken....Unallowed.  I am SURE that my sister has had this thought SO many times in her life (or maybe not??), but I have never felt like its something I deserved to ask myself.  Because i am NOT the diabetic.  But, still....Why Me?  Why did MY family have to be affected by this disease??  Why did MY sister have to have type 1??  I wonder what could have been, what life would have been like.

Would my sister and I have had a different relationship?  Would my parents have stayed married??  Would my brother have felt less insecure??

Well, I just wonder.  I am angry I have to wonder.  I hate that there is this "thing" that tore everything apart and remains.....

Hello Me....

At some point in life,  you start to figure out who you are apart from your family.  For some people this happens pretty early in life.  For me, it feels like its happening now.

I realize that growing up in a T1 household, there were just so many rules in place to keep my sister in control and the family organized.  And there was also such a big lesson about cause and effect that I learned at such a young age.  If my sister's diet wasn't right, there was a price to pay.  I remember so much yelling and screaming and fear when my sister would have an insulin reaction.  I know it really all came from fear, I felt the fear..but, it manifested itself in chaos.  I remember being worried that my mom would get fed up with it all and leave us.  She took a lot of fear and anger out on me.  I worried that an insulin reaction would make her mad.  And I am not the diabetic, so I can't speak for how my sister felt about it all.  I remember my mom getting SO mad at my dad if he was left to "babysit" us and he gave my sister the "wrong" thing.  Oh man, the consequences of that sucked!

So, the thing is, I developed coping skills to exist in this environment.  And they were significant coping skills.  And then at 18 I essentially left home and went off to college, never to really return except for summers.  My T1 sister was 15 at the time.  So, all of my memories are of what it was like to live in a family with a CHILD with T1.  And I was a child.  I am realizing that all my thoughts and methods of operating are stuck in time.  My sister, on the other hand, grew up and evolved with her disease.  She learned to gain increasing control over her own health and destiny.  She had to suffer all the consequences on her own as she left home on how to manage her disease.

But for me, I guess I never evolved.  I have been operating in my mind, with the same old broken record of coping skills that it took to be a child in a T1 household.  How to get attention in that environment, how to keep everything in control, how to worry.  I am an expert at worry!

So, today I am realizing that...today I am saying "Hello Me"....things have changed....its time to think of me for a while!

Did I Matter.....

I just wonder sometimes.  Did I matter to my family?  Was I 'non diabetic' ENOUGH??  Did I do enough to make up for the fact that my sister has T1??

I wish I didn't worry about these thing.....

Fearing the Worst....

I was thinking about something the other day and it hit me that I have been living under false, or dated(?) information.  Once my sister's diagnosis set in and we began to live with it as a family, there was an unsaid reality that existed....That this illness was chronic and she would die.  I realized this morning that that fear of her mortality has been with me all my life.  As a kid I was so scared of it I couldn't even talk about it.  I remember relatives shaking their heads and saying "oh your poor sister" and then implying that her life expectancy wasn't that long.  Oh man, that used to scare me.  As a kid, I didn't know what "not that long" meant, but, I just knew it was "there" and it was another reason why it was hard for me to be heard because how do you compete with that??

As an adult, in the back of my mind there was always this mythical clock ticking on her life.  Over the years I have woke up in a cold sweat so many nights, panicked that I haven't done "enough" for her, because I still believed there was some "timeline" out there.  I have also spent most of my life believing in my mind that its only a matter of time before i would need to donate a kidney to her.  Its EVERY PART OF WHO I AM.  I have realized!!  As a kid i FEARED her death and because of the lack of education on the disease back then, my fears were often validated by uninformed relatives.  As an adult.....I have feared it and believed that's AGAIN why my life issues will never be able to compete with that.

BUT, now let's talk about reality!!!  My sister is REALLY HEALTHY!  Yes, this is me saying this.  My sister isn't walking around on her death bed like I have been conditioned to think since childhood.  She has a full life, and there is absolutely no reason she couldn't outlive me.  So, what's changed??  I think knowledge about the disease since it was presented to ME in 1976 has certainly changed.  I think my sister is amazing and takes such good care of herself that its no where NEAR the "worst case" scenario that I thought as a kid.  And, I have grown up and maybe am able to get some perspective on it.  

What I am trying to learn to do is separate my lingering childhood fears and conditioning about all of this from facts!  Its just that sometimes, it takes me a while to do that, and then its like being hit over the head!

Its time to let go of the worst case, gloom and doom scenarios drilled in to my head as a kid.......My sister is not going anywhere....