Wednesday, November 23, 2011

Looking for some advice please

Last night I was invited to speak about my book at a JDRF meeting. Emma came along with me actually...which I wasn't too sure about at first. I was thinking it would probably be boring for her and I would be completely distracted watching her and trying to find ways to entertain her while we were there. She completely surprised me though because she was very involved and actually sat right next to me the entire time. Seeing as how I am not a big fan of public speaking, a very good friend of mine came up with a really amazing idea to make the book discussion sort of like an interview. She would be the host of a talk show and ask me all the questions pertaining to the book. It went over REALLY well! I am so greatful to have her in my life.
Anyway, I found myself recalling certain points in the book...memories of our times with this disease while we sat up there in front of everyone. I think probably the hardest thing for me was to talk about diagnosis day. I have never actually spoken about that day with Emma in the same room as me. I mean...yes...I have talked about certain aspects of that day when she has asked me questions about it over the years....but I've never really brought up my feelings or emotions from that day. I have made it a point to hide that from her I think. I've learned to hide my tears and shove all of the hurt and pain and sadness way down deep just so she won't have the  impression that diabetes is "too much" or "too hard to handle." I have tried to shelter her and attempt to focus on the strength, the courage, the bravery....and especially the fact that WE are in control of our lives...NOT diabetes. I have tried to set this as an example for her and teach her that diabetes does not define's not who she is simply a part of aspect of her life (albeit a pretty big aspect...but still, ONLY an aspect). So, anyway I sat there trying to explain to the group before me how I felt in that moment. It was extremely hard for me to get it out really...I was nervous enough to not even want to make eye contact with any of them...I just sort of glanced from the ceiling to the floor and back again. I talked about how I felt sort of torn in two that day. I wanted more than anything to escape that little hospital room...that dreary room where we had just heard the most awful news...the room that would forever signify a complete 180 in my heart and my way of thinking about life. I wanted to grab Emma and run from there...leave it all behind and just pretend...try to convince myself that it wasn't so. I wanted to outrun diabetes...get as far away from it as possible. Yet I also wanted to stay put...I wanted to stay in that little room and never leave it. I wanted to grab hold of Emma and wrap my arms around her and never let go...just close my eyes and rock her back and forth and wait for someone to help give us a magic pill to make it all go away. We all know how the story of that day ended I suppose. I pulled up my big girl panties and took on my job as Emma's pancreas...I didn't want the job, I had no idea how to do it, I was scared out of my mind, but I did it...because she is my baby and I love her.
I went on to read a portion of my book as well last night. I chose to read about our first plane trip back home to the States post diagnosis. I was so engrossed in reading it and reliving that moment in my head, that I didn't look up at all. I didn't see the group before me, I didn't see my friend or Emma beside me. It was like I was watching a movie in my head of our life. I saw myself standing behind Emma on the moving walkway in the airport...saw her sitting "criss cross applesauce" on the walkway in front of me...arms raised above her head shouting, "WEEEEE!!!" as if she was on a roller coaster ride instead of a flat escalator looking thing moving at a snails pace. I saw myself making a barricade around her with our luggage in the middle of hundreds of people waiting at the gate to board the delayed flight. I saw myself giving her the injection to cover her sandwich supper. I saw the determination in my eyes...the fear...the worry...the stress and the exhaustion. It was such a surreal experience for me. Instantly I was snapped back to reality when I heard Emma quietly sobbing next to me...she pushed her forehead into my arm to hide her face. I could have fallen through the floor right heart broke again. I had no idea that hearing me read of that moment in our lives would affect her so much. I had no idea that it was upset her. While the actual moment was occuring, she was oblivious to the whole stress of it for me I think. She just saw her Mommy going about the usual business of getting things big deal, right? But then to hear me read about how I ACTUALLY must have broke HER heart. What a sweet beautiful soul she has.
It got me thinking though, was I going about things the wrong way all of this time? Was I doing it wrong by choosing to hide these feelings from her? Should I have let her in on the worry and the fear and the emotion of it a little bit more these past 3 1/2 years? Maybe I am not preparing her properly by making it out to be such a matter of fact...non emotional disease? I have shed a few tears in front of her before...I have let a couple of f-bombs fly when diabetes has frustrated me to no end in front of her (of which I am not proud...but I'm sorry...I'm only human...I'm not perfect). Am I handling the emotional aspects of this disease the wrong way? I would love some advice or input from all of you...I know diabetes is a very personal disease and there is no right or wrong way to do things....but I still sit here wondering if I am just going to be causing more problems down the road for her by not sharing MY feelings, worries, and fears with her in some way as we go along trying to manage this disease. Thanks in advance for any help/ideas!

1 comment:

  1. truthfully amy, i think you have found a very good balance. while she is a very astute girl, she is still just that - a little girl. there's nothing wrong with her seeing your frustration with the disease from time to time as i know that she is very clear on the fact that the frustration is not with her. but i think - at least in my own mind having a parent who shared everything - sharing too much up to and including this age would only have been more detrimental than helpful. i don't think she would be as open with you as she is because she may have seen it as just one more thing for you to worry about and thus become more overwhelmed.
    her understanding how you felt on the diagnosis day is now a gift. she not only sees that the enormity of the situation was beyond imagination to you as her mother, but she now has a benchmark to see the way you coped and the strategies and methods you developed. Most of us see our parents as infallible for so many years and then when we see that they aren't - many can't cope. You've demonstrated that even in the worst situations that there is an inner strength that you can tap which allows you to square up your shoulders and take aim like a bull at a matador. You've shown her that it is okay to be scared, but that you still have to face the situation no matter what. You've shown her that it is okay to have a couple of chinks in the armor - she will be emotionally healthier for that because she won't be beating herself up as much when a rough day gets to her - for whatever reason. You've shown her also that it is okay to ask for help and that people don't look upon her as a victim and there will always be people who will care about her as emma the person not emma the diabetic. another way of looking at it is - a couple of years ago you may not have let her see you grieve at losing someone - now she is getting old enough to understand WHY you are upset at losing someone. you wouldn't necessarily give her the entire story when she asks now, but some details and emotion are okay. same with the d-story.
    you've done great. you beat yourself up because you care. parenting is tough enough without anything added to the mix. follow her cues and then when the time is right she can have the book. she's a smart cookie - gets that from mom :) so trust her to lead - you both will be amazing.

    off my soapbox now - i promise.