I haven't blogged in a LONG time. Mostly because I have been busy. Partially because I did a lot of writing when I was fundraising for We Care and JDRF at the same time and I got a little burnt out. But, also because I just haven't had anything that I really wanted to write about.
I have had this list swirling in my head for a few days now, making it hard to sleep. It's a list of things you don't know. Now, don't get offended. It's not your fault that you don't know and I sincerely hope that you never have to know. I also understand that some of you DO know, all too well. My fellow D-moms, you know. Moms with kids who have any chronic illness/disability, you will be able to relate to a lot of this list.
So, here it is--things you don't know:
You don't know what it feels like in that last 2 steps toward Brenna's bedroom door every morning, praying that she is alive.
You don't know what it feels like to look at her poor, bruised little thumbs because that's where she prefers to poke herself.
You don't know what it's like to not enjoy her concert because all you can think is "is she ok", "does she need juice", "are the lights affecting her", "what about her nerves", "what if she passes out", "can I get to her in time".
You don't know the constant fear of what high blood sugars are doing to her kidneys, heart, eyes, nerves, everything.
You don't know what it feels like to watch her cry because she doesn't want another shot/pump site/blood draw.
You don't know what it's like to have people say that this is your "new normal". I hate those words!
You don't know how it feels when your non-D child says that sometimes they wish they could get Diabetes so they could get special treatment too.
You don't know how it feels to never be able to let it go. To have Diabetes occupy a part of your heart and your mind 24/7/365.
You don't know real guilt like I feel when her numbers are bad.
You don't know what it's like to be terrified that she might want to go to college.
You don't know how it feels to wish she wouldn't wrestle with her dad or her sisters because you're afraid that she will rip her pump site out.
You don't know what its like to pack for a kid with diabetes!
You don't know what it's like to have to follow her to church camp because it is a full time job to take care of her and you can't ask anyone else to do that. Even if they did, I would be nervous wreck!
You don't know what it's like to be sitting in church and the Sunday School teacher comes in and says, "It's Brenna".
You don't know how it feels to wish someone close to me could really understand but know that the only way they could is to have their child have Diabetes and I definitely don't want that.
You don't know what it's like to have constant contact with the school nurse.
You don't know what it's like to know that if your child ever wants children, she will have high risk, probably very difficult pregnancies.
You don't know what it's like to know that your other kids and future grandkids are at a higher risk for developing diabetes.
You don't know how much I read about diabetes. Always praying that the answer is in the next article.
You don't know what it's like to really pray for a cure. To be absolutely willing to give up everything to find that cure. Even if it meant my own life.
You don't know what it's like to never be able to look at her as just a kid. I always see Diabetes.
You don't know what it's like to say "We're ok" when you know that will never be true.
You don't know what it's like to look back at old pictures and automatically decide if it was before or after Diabetes. If before, the next thought is always if there are any signs that it's coming.
You don't know what it's like to be resentful of people who let their kids walk around with bags of potato chips or candy in front of Brenna knowing that she will never be able to just graze like that. She can have that stuff but she will always have to check her sugar, determine how much she is going to eat, and bolus.
You don't know what it's like to have to pull over on your way to WalMart because she feels low and too shaky to check her blood sugar when the car is moving.
You don't know how heart breaking it is to tell your little girl that this is forever. That she must count carbs and take insulin or she will die.
You don't know how heart breaking it is to face that fact yourself. Even if we do everything right, there are no guarantees. This disease could kill her.
I could go on for days, but I think that's enough for now.
I want you all to know how much I appreciate all of you who have made any effort to understand Diabetes and be able to care for Brenna. It means so much to have family and friends on this journey with us. Hopefully, you will never know what this feels like from the driver's seat (only Brenna can sit there), but we are all passengers on this ride. Thank you for not jumping off!! Thank you for not being afraid!!
Love,
Debbi
