I'm also a smart person. When asked in interview situations, "what is your strongest characteristic?" I routinely answer, "I get stuff done." And I do. From the time of Grace's diagnosis, Tom has always joked, "diabetes doesn't know who it messed with."
I'm a fighter. I've fought for Grace since she was two and diagnosed with a severe peanut allergy. I learned how to assert myself to make sure she was safe. I removed her from situations that were unsafe. I educated people along the way. I built a strong foundation of advocacy that has served me well these past few months. I never really cared if other people looked at me like I was "that mom." I don't have time for people like that.
As I type, I wait for the doorbell to ring. UPS is delivering an insulin pump for Grace. I wish it was as easy as picking up the phone and saying, "Hello Animas? Yes, I'd like the Ping pump! What color? Pink of course!" But it hasn't been that easy. It seems like nothing ever is in diabetes world.
Grace's friend has an Animas pump. It's pink. It's like totally awesome. She loves to show it to Grace. It was the pump Grace had to have, as only a 7 year old can want something. I don't routinely buy ponies, special gifts, candies or anything else that might spoil my children. But that insulin pump? Yes, I will make that happen. And I did. And this is how I made it happen.
Animas has not released any pumps since the beginning of March. There was a software problem with leap year. We got caught in this mess right before the storm hit. They were ready to ship our pump when they stopped shipping any pumps. Animas was curiously quiet as to what was going on. Very little information was being released by the company. I'd call and get vague responses, "Next week!" "Definitely next week!" "Maybe next week!" "We just don't know."
These interactions left me frustrated. Under the encouragement of Animas we had already scheduled an appointment at CHOP to get Grace "hooked up." It's hard to schedule these appointments. They fill fast. We all have lives. Finding large blocks of time to fit everyone's schedules is extremely hard. I was not going to cancel our appointment.
I contacted Animas's director of communication and received a very vague, "we're so sorry, cancel your order if you like, we understand." That was not acceptable to me. I want the pump. The pink pump. The one Grace's friend has. The one she said she can't live without. Tom suggested I get real angry-like. Call them up! Dig into them! Show them your teeth! I decided on a different course.
On Monday, I started flaming Animas on twitter. I have a twitter account and have just under 300 followers. Many of my followers are in the type one community. I was mad. I wanted to connect with any other parents out there going through a similar situation. I also wanted to unleash a social media storm. Within 5 minutes I received a note on twitter from Kerri. Keri is a type one social media star. I first came across her when Grace was diagnosed. I was googling looking for blogs and found her's. She's been type one for 25 years and has an amazing blog. I contacted her, explained Grace was just diagnosed, and said thanks for sharing her journey. The next day I received an email from her full of all the right words. I love Kerri and routinely follow her blog.
"I want to help," read her message. Kerri, in addition to being an awesome media presence, also works with Animas. I wasn't sure how she could help but I figured it couldn't hurt. To have someone reach out to you when you are at your wit's end felt nothing short of miraculous. I shared some details with her and called off my social media campaign. I would remain silent until I could see where things were going. Later in the day I heard back. Animas was calling CHOP. They would contact me the next day. I was confused and not sure what was going on. Kerri assured me she adored Animas, feels they're the best out there, and was confident she could help.
The next day I spoke to Grace's doctor. Animas offered a compromise. They can't release their latest model yet. But they would give us the older model and immediately upgrade it when the "Ping" is released. Our doc thought this was a good deal. It would get Grace the pump she wanted, keep us on schedule for pumping, and he still felt the company should be trusted. After thinking on it, I decided to take it.
Throughout this process Tom and I went back and forth on switching companies. We could have gone with another pump. Every time I brought it up to Grace she got really upset and agitated. This particular pump has a remote that I can use to dose her without really interrupting her meal. I wanted it and Grace wanted it. When you live a life of so many things being denied to you, I think it's reasonable to stick to your guns to get the things that are important.
Advocacy. If your child has any kind of chronic condition YOU have to step up to the plate. You have to be the one to make things happen. No is not an acceptable answer. The last blog entry I wrote, I mentioned "negotiated victories" and here we are. This isn't the ideal situation. We want the newest model. But it is A solution. It's a solution that allows us to move forward. It has made Grace happy. It has made me happy. It has made our CHOP team happy. A happy ending? Kind of. But an ending that is acceptable. For now.