Don’t even know what to say, I’m just annoyed

Princess Punk had her JDRF Walk for the Cure yesterday. Overall, the walk was a success as it always is, they raised a decent amount of money and had a good amount of walkers (although less than last year I think). The local news station was there so there was some exposure and lots of local business donated time, money, food and services. The only thing?

Nobody showed up to walk with Princess Punk.

My parents and I, The Peach and The Princess. That’s it. The Zen Master and Crazy Girl both had to work so I knew they weren’t coming. The problem was, Princess Punk’s youth group from church had committed to walk with her and her soccer coach said he’d send out an email to everyone to encourage them to go as well since the game yesterday wasn’t until 2pm and the walk started at 10am. I made up a facebook event, we put up fliers and a couple of Princess Punk’s friends from school said they would go.

Nobody followed through. Not one single person.

It effing hurts. Every. Single. Time.

Princess Punk is my hero. She is beautiful, funny, goofy, tough, smart and is dealing with this disease the best she can. We are having some compliance issues at the moment, she is skipping insulin at meals and not always testing when she should but we’re all working on it, it’s a team effort. This kid has been poking her fingertips 4 times or more per day since she was 9. That’s over SIX THOUSAND TIMES. She has to wear an insulin pump about the size of a pager that is attached to her body by a long thin tube. She has to be careful what she wears and has occasionally ripped it out when the stupid tubing gets caught on something. She changes is supposed to change her infusion site, where the pump attaches to her body every other day. She has to prep the pump, fill the reservoir with insulin, put the insulin in the pup, stick the cannula (the little piece of tubing that goes into her skin) in her belly, arm or leg with an evil looking plunger thingy with an inch long needle in it and then pull the needle out while leaving the cannula in and make sure everything is secure. To date, she’s done that over 500 times. Before she got the pump, she was on shots. She had to give herself an injection every time she ate anything at all (ANYTHING, even a handful of skittles from a friend) plus another one at bedtime which we usually had to do for her because it was a different kind of insulin (long-acting) and it stung. In the year or so before she was on the pump, she endured more than 2000 injections. She faces the possibility of serious long term complications like gastroparesis, blindness and kidney failure. When she is an adult and wants to have kids, her pregnancy will have to be monitored extremely closely to make sure both she and her baby make it through. Even now, something as simple as the flu can be life-threatening to her.

She is 12 years old. She does all this without complaint or tears or whining and while not always on the ball with it, she handles herself with a grace and ease that I’ve seen lacking in many adults. If she takes care of herself, shows a bit more compliance and learns how to integrate managing her blood sugar into her daily routine, she’ll be able to have a normal life like so many people with Type 1 do.

But she is only 12. And she needs support. She needs her friends and her family and her community to show her that she is loved. That we care about her and while we’ll never know what she is going through, we’re behind her every step of the way. She needs to know that dealing with this disease is something she has to do but we love her anyway and we’d like to keep her around. She’s having major issues accepting that this disease is now a part of her, a part of who she is and while it will always be there, it’s not all there is.

So when nobody showed up to show their support for my amazing, brave daughter, it pissed me off. I want her to feel like we’re behind her, in her corner, there for her when she needs us. And not just her family, but all the people in her life. I know it’s unrealistic for me to expect everyone to show up but her church youth group? Her freaking soccer team who have all seen how she has to constantly test while she’s playing to make sure she doesn’t pass out in the middle of the field because although she will feel it if she gets low, she will keep playing no matter what because she doesn’t want to let her team down.

We did get some donations which I am truly grateful for and I love every single person that donated because I know that someday there will be a cure and the money raised by JDRF will be instrumental in making that happen. But for me, this walk is less about raising money and more about showing Princess Punk that even though she has this stupid, shitty disease, we’re here. We don’t give a crap about Diabetes and when we walk with her, every step we take is smushing the “D” into the ground to stay where it should be; Out of the way of her life.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: