Trying To Be Heard.....

So, here has been what's on my mind lately......

I have been thinking that for most of my life I have given no validity to the idea that growing up with a sister who is a Type 1 diabetic may have also impacted ME.  Recently, I am allowing myself to think it had more of an impact that I yet realize.  THIS is what I am finally coming to understand a month before my 45th birthday (better late than never, right?).  I am only NOW realizing how my family dynamics may have affected me.   I continue to believe that I don’t “do” enough to make up for the fact that I am not diabetic and my sister is.  

A good friend recently made a comment to me that seemed to resonate.  She said “B, your sister has built a full life and is happy, you on the other hand are living like the Diabetic.  You can’t let the guilt go.”  Maybe she’s right, but how do I accept that I am not the Diabetic, and the sister I love so much can’t escape it?

Well, lets start with the beginning, what I remember from my perspective, my sister's, I am sure, is different!

When I was 9 years old, my younger sister who was 6 at the time was diagnosed with Type 1 Diabetes.  At the time it was called Juevenille Diabetes.  It was in the summer, I was away at camp when the “event” happened.  My sister went in for her kindergarten checkup and was sent immediately to the ER and admitted to the hospital.  I didn’t know any of this, of course, because I was happily up at summer camp worrying about what I would make at crafts that day.  While I was gone, so many changes took place.  My parents, specifically my mom, had to absorb the news.  They had to accept all of this information that was now being given to them about the lifelong disease that my sister would fight, and their responsibility in keeping their child alive.  They had to learn about insulin and how the body absorbed it, blood sugar levels and what they meant, how to give a child a daily shot, the proper diet that went along with certain types of insulin to give, and how to actually give a shot.  But, I didn’t know this.  This is what I knew.  I was the oldest child.  I have a younger sister who is 3 years younger than me, and a younger brother that is 6 years younger than me.  I knew that I was the oldest child, and oldest children tend to feel the center of attention.  I know that when I got home from camp, ready to enlighten my family on how important and relevant all my activities had been over the past two weeks, my family was light years away.  I can’t remember exactly how they told me, to be honest.  I remember coming home and finding out that my sister had been in the hospital.  Which I didn't completely grasp because she LOOKED fine.  But, then the evidence of the hospital visit started to become clear.  There were PRESENTS for her all around.  

That is what I remember, how unfair it felt that she had presents.  Its hard to even write that now.  I don’t remember understanding what “diabetes” meant.  So, while my parents are tactfully trying to navigate through this new world we were now a part of, I didn’t understand what was going on.  

We entered into a new routine, which i know was more gradual than I remember, but I think I lumped about a year of memories into one group.  There was now a “production” that took place all day long.  In the morning there was testing the blood.  So, a little 6 year old now had to wake up and prick her finger.  I don’t even remember what method existed in 1975 for this, but I am sure it sucked.  I am deathly afraid of needles, and to comprehend that my sister had to stand there and “take” it was beyond what I could absorb.  I couldn’t fix it, so I denied it.  I couldn’t “take” her pain, so it was easier to pretend it didn’t exist.  It breaks my heart to say that too.  I wish over and over that there were stories of my strength and relevance as an older sibling to this process.  I wish I had demonstrated compassion instead of jealousy and fear.  Because bottom line, I was so jealous of the Tectonic SHIFT in the dynamics of our family and the object of all of the attention.  I was completely unprepared.

So, it seemed to me that days were now filled with the anticipation of needles.  I was so secretly relieved when the the day did NOT involve my sister having to stick another needle in her body.  I probably loved that outcome more than she did.  But, even then, it occurred to me the irony in this.  While I didn’t want her to have the pain of the needle, I wanted to have the information that a finger prick delivered.  I wanted to know that she was “ok”.  Of course it goes without saying whatever I felt can only be a fraction of what my parents felt, but, they don’t really talk about it, so, I can’t really comment on it.  But since we NEVER TALK about any of this, I guess I never processed it all, I just let it all sit inside my head and create stress and worry!

And, then there was “dinnertime”.  Before dinner, a shot had to be given.  I just remember it was awful.  My sister didn’t want a shot (who would?), and she cried.  My parents, I am sure, didn’t WANT to give their daughter a shot (who would?), but they had to.  And then it would be over.  And It would feel like we had a few hours of normalcy before it all started again.  

For a while, I know that I thought it would come to an end.  That things would go back to the way they were.  I guess that’s the denial phase.  

I worry every single day about my sister.  I feel guilty every single day that I wasn't the one who is diabetic.  I measure everything in life relative to what she endures.   I feel my problems can't 'compete' with her disease.  Honestly, I feel alone.  I have looked for support groups for siblings of type 1 diabetics to no avail.  So, I took to the "blog".    

Maybe there are others out there who'd be willing to share.