I'm finding that the further I get into the thick of things, the more I hate this disease and what it has done to my family. Which, does make sense, I know more about it now then I did a year ago. But now I am starting to feel the effects of it and it sucks. I really fight the urge to seriously HATE D. I don't like it but when I get mad and frustrated at D it feels like I am mad and frustrated with Audrey and I don't want her to feel that way. Yet, I hate completely hiding my feelings around her because I want her to know it's okay not to like her diabetes. Right now I think she just accepts it as part of her and doesn't give it another thought. I pray it stays that way.
The feelings of Then I see the effects it is starting to have on my oldest, who think Lovebug gets to do a lot of "special" things with mom. That's not the case, it all D related but apparently my oldest isn't seeing it that way. I hopefully have remedied that by telling her she gets one night a month that her and I get to go do something special together. She liked the idea, so we are going to stick with it.
I struggle with people understanding, and wanting to understand what we are going through.
I pull my hair thinking about this. I have friends and family that truly care and take interest, they learn about this disease and how to take care of D. They ask questions, they tell me they are praying for me. Let me tell you, those "little" things mean the WORLD to me. Words just can not describe what that means to me! THOSE are the things that lift my spirits now a days and keep me fighting. Then there are those that have faded into the background and it hurts, really deep.
The Walk to Cure Diabetes coming up soon I have been trying to think of some way to help people understand what their support would mean to me. Their support to walk with our team and help raise money for a cure. That kind of emotion is hard to put on paper. While I want to bring awareness to the disease (although that is part of the goal) my goal is to get people to stand with me; to really understand (as well as they can) what this disease does to my daughter on a daily basis. The toll that it takes on our family. I want people to understand with their hearts, not just their heads
I just LOVE how my friend Amy put this on one of her blog posts. (*note: I did change it to say Lovebug instead of Amy's son and she instead of he.)
"And I don’t want people to feel sorry for Love Bug or our family because we live with D. I want people to understand so they see how strong Love Bug is and praise her for it. I want them to be aware so we can raise money for research for a cure. I want people to know so they understand when I’m tired and just need to stay home and love on my d-love (Lovebug) or my family because we’ve had a couple exhausting days. But more than anything in the world, I want people to look at Lovebug to see Lovebug, not a disease.She is amazing. She has a bright future. D will ONLY stop Love Bug when she chooses to let it stop her."
This is EXACTLY how I feel! I don't think I could have said it more clearly myself! Amy said it PERFECTLY!
After fighting this disease for a little over a year the magnitude of it feels like it is just settling in. It's really hard to be "happy" when this disease stares me in the face everyday. It is hard to stay focused on the positive. D has changed my life and changed the life of my husband and kids, FOREVER.
It has shaped who I am and who I will be. But I WILL NOT let it get me down. I WILL make the most of what I have been given, the hand that I have been dealt.
I may have a lot of bad days. I may even wonder sometimes if I can really handle this burden I have been given. I may always be sleep deprived and worry about her. I may always have day filled with tears, anger and frustration BUT
I HAVE to choose to focus on the positive. My daughter is here. She is ALIVE. God has blessed me with the most wonderfully understanding and patient husband I could ever had imagined to help me through this . He has been and always will be my biggest supporter and I love him more deeply now then I ever thought possible. I have been blessed by a community of Moms that REALLY understand because they are right in the thick of it with me. I will pray everyday for strength to fight this disease because "His love will lead me to fight another day"....I will keep my head to to sun because It's shining on me.