Many of you who know me personally know I am passionate about Type 1 diabetes. The last 2 years have seen me more motivated than ever to take a stand and advocate – to make changes – to do something. I wanted to participate in the legislation that encouraged medical personnel to screen for, and educate patients about, the signs of Type 1. There was a woman who technically is a “local” to me, who became very active in PA and as I understand has make some serious headway. I thought as a now resident of Maryland, that I should step up and move the cause forward as well. Enter stage left – a couple of organizations who are motivated to push forward the symptoms of Type 1 and spread awareness worldwide.
It occurred to me early on that to organize individual efforts in this arena could potentially make “us” – the DOC (diabetes online community) – appear disorganized, with so many individuals launching their own campaigns, and that alone can spell disaster. It also occurred to me that some people may possibly be interested in owning the glory for all of this advocacy. Given my primary focus has always been on a cure, stepping into the DKA awareness movement was new to me. But the horror of several children this year alone being dismissed with flu-like symptoms (or some other common illness) and later dying left me feeling angry and sad that this could happen in 2015. And, truly believing in the Test One Drop campaign (with its brilliant, unique, and simple brand), I felt it best to step back and wait to see what I could do under its umbrella.
I still don’t think I am wrong. However, over the weekend, on the one day we were supposed to reach the most people worldwide – Islamic a-holes stole our thunder. And then it came to light that a recent horrific story about a little boy in DKA (diabetic ketoacidosis) might be a fabrication. I awoke Saturday morning to a virtual lynch mob of parents who were eager to uncover the truth and all too eager to place the blame on someone. I was shocked and perplexed. The online support groups are supposed to do just what they say they will – to support.
However, this particular group was filled with sheep pointing fingers and digesting the limited information with hatred and disdain. I wondered how these seemingly educated people fell in line like dominoes behind the words of a few, quick to blame and equally quick to jump on the drama train. These parents, mind you, have very limited time and a serious lack of sleep to their credit – so perhaps they, too, are a little too trusting of what looks good in spite of their lack of adequate proof. But really - who has time for this? Who was checking their children's blood sugars all day for them - while they sat on Facebook behaving like the very trolls they're seeking to expose?
I got sucked into this drama early Saturday, and it consumed my day. By the time Todd and I left the house to get my rings sized (because I now have arthritis and with the swelling I’ve gone up a whole ring size) I was preoccupied and melancholy. I had placed my faith and trust in a complete stranger with a brilliant idea, who was being annihilated online by another group of complete strangers I have also trusted to give support and understanding. I can’t even begin to tell you what the impact of all this has been.
I don’t get depressed, but let me tell you – this whole shit storm has left me feeling weak and sad. Being the parent of a special needs kid – no matter what their needs – is a full time job. It takes a financial toll, a physical toll (for those of us who wake up throughout the night to be sure our child is still breathing), and an emotional toll. After a much-needed Friday night out – I learned that I’m not the only mom who drinks. We need an escape sometimes that only alcohol can provide. Nevertheless, the support we get is priceless. Unless it is compromised.
And yesterday my general support network was compromised. I can’t tell you what that feels like, and I’m not going to whine about it. It is what it is. Several months ago some other drama occurred that made me question whether to stay in the group, or move on. I chose to ignore all the warning signs, and pressed on. Today, I’m feeling extremely conflicted as I decide if I want to continue on as a member of this group that was so eager to lynch another DOC member. I have some insider knowledge, and I don’t believe that either party had any malicious intent, but many signs point to a handful that were all too eager to throw one of their own under the bus. People were blocked and removed from the group, and I wondered – what would I have to say that would make me get blocked? And why the F@#$ do I care??
My preoccupation with this drama has stolen me from Todd, and from my children. I’m distracted and moody. So – I’m now having a look at what I want as I move forward, looking toward another career opportunity, and what exactly I want to do in terms of advocacy. This morning I wanted to shut down all communications, and stop advocating altogether. All of my friends and family can see my posts – it’s up to them to pay attention or ignore. Isn’t that enough? Maybe I just need to readjust my focus.
As a parent of a Type One child, I can assure you that bullshit is not an acceptable part of this package. Having a challenging and sometimes obstinate 10-year-old T1 has tested the limits of my sanity and many times made me question my ability to be her mother. I planned this whole other post about our summer vacation with my mom – how it transpired and how it ended – but lost my motivation amongst a myriad of distractions.
My daughter was not only demanding of specific accommodations that were completely ridiculous (like the outrage of an orange wedge being served on the side of her Shirley Temple), but she forced me to be the food police (a job I loathe more than washing shit off the dog’s ass). She pushed every last button I had left and, in one late night call to Todd from the hotel balcony, made me swear I’d never vacation with her again.
On the very last day, with her sugars running nearly 300 at breakfast, I needed to change her insulin pump site. She, as any kid who’s had enough of this stupid f@#$ed up disease, gave me a rash of shit saying how much she hated diabetes and how it’s ruined her life. At that moment, locked in the semi-privacy of a public restroom stall and trying to change her site, the tears I never cry over T1 started falling silently over my cheeks. She asked me then what was wrong, and all I could say was, I’ve had enough. A brief moment of surrender to the devil who refuses to leave our lives. I’m done. I just can’t – anymore today.
So many people have praised me for being strong, for being a great mother, for having to be and do the unthinkable. While I don’t want to sound ungrateful, this year has me feeling less deserving of the accolades. Something snapped in me earlier this year. I began to feel more emotional about this diabetes thing, losing my shit and letting these weird things called tears fall from my eyes. After 8 years, it’s as if I suddenly realized what I’ve been doing, how difficult it is, and how hard it’s going to be as we move toward adolescence. How hard it’s going to be for my daughter. And as of this weekend, I’m quite frankly fed up with diabetes. I don’t feel like talking about it anymore, I don’t want to hear about it anymore, and I don’t want to read about other people’s T1 troubles anymore.
And so – on this Sunday evening – I know a few things:
My daughter has Type 1 diabetes and is, at this point, not curable.
Every special needs parent falls into a rut at some point, and I’m there.
I don’t want another child to go misdiagnosed, or undiagnosed.
I will do the JDRF Ride for a Cure - 100 miles – next summer, as planned.
I will continue to write.
My life is blessed and I am not afraid.
There will be a cure for T1 in my lifetime.
I’m leaving Facebook for the next week, to see what life looks like without it. (This is not because of the online drama. Last week a radio station stated that people without FB are happier. So – an experiment for me.)
I want to nurture my real-time friendships.
Today was a rough day. Too much crap happened in such a short period of time, and I’m toast.
You all will be here when I get back. J
Keep sharing the signs. You just might save a life.