Some days, I don’t recognize myself….I used to not care what anyone thought…
I didn’t start out that way, in fact, I think it was a “fake it until you make it” situation. I remember being young and being so worried on the inside, that I wasn’t good enough, that it affected so much of my life it was ridiculous. Then at some point, it was like “light dawned on Marblehead”, and I thought, “really, who gives a fuck what anyone thinks??” And life became so much easier. I met an amazing guy, we became best friends, got married in 2000…Life was good.
Then, a few years into our marriage we decided to have kids…it turned out not to be so easy…within the first 10 years we had 3 miscarriages, in 2004, after 12 weeks of bed rest (almost 6 of them on my ass in a hospital) we had a healthy set of twins and in the next couple of years two beautiful, healthy baby girls. I was so grateful that they were born healthy, I thought, nothing can stop us now!
And then in the span of 2 short years we had a child who became septic and almost died, a child diagnosed with T1D, a child diagnosed with a seizure disorder, and a child diagnosed with Celiac Disease. The hardest 2 years of my life, I don’t know about those of you who have children with chronic disease, but for me, I was consumed with worry…in a constant state of flex, waiting for the next low BG or the next seizure, for the next major diagnosis…. the anxiety was overwhelming at times. I didn’t sleep, I barely ate and isolated myself away from pretty much everything, including my best friend (you know that awesome guy I met?)
Fast forward to recent days and months, I am exhausted, I am still filled with worry most days and nights. Thankfully, the seizure disorder was outgrown. But the Diabetes and the Celiac are here to stay. My son who has T1D, does not feel when he is low…and that is terrifying.
I guess in some ways I have felt that if I could make people understand how scary and unpredictable diabetes is, then they would be as dedicated to finding a cure as we are, but that is simply not true, and I get that, because the only way to truly understand a life with T1D is to live it. I thought by sharing the stories of lives lost from this evil disease and by sharing the crazy numbers that Matt experiences I could single-handedly educate everyone who bothers to read my posts! I became so wrapped up in my “mission to educate” that it never occurred to me that I was doing more harm than good. People began to say things like “wow, Matt’s diabetes is really bad!”, and calling him “brittle”, and that just made me harder on myself, thinking, i was failing him.
Then, a couple of weeks ago, I got sucked into a hoax …a blog was posted about a young girl who was recently diagnosed with diabetes dying in her sleep. My heart ached for this mother, for this child, for my son, for me, and i didn’t hesitate, I shared it, because I wanted you all to know how evil Diabetes can be. And then I found out it was a lie, a hoax, a mentally ill person wrote this flat-out fiction( I have to believe she was mentally ill, because I cannot even begin to fathom why anyone would do this otherwise) and I was dumb-founded. I whole-heartedly believed what I read, and I thought, “wow…who have I become?”
I somehow let diabetes suck me in, I began to focus on what I wanted to change, what I hated about our lives, about watching my children have to deal with so much adult crap, that I neglected my self, my marriage, my friends. I lost judgement and I was desperate to have people “get it.” But the truth is, I am tired. Tired of being angry, tired of being scared, tired of being tired. I miss my life, I miss my best friend, I miss not giving a fuck what anyone thinks!
So the question is, how do i find me again? Well, I will….overtime. For now, I plan to go back to advocacy and education through what I know. Diabetes is running rampant, 80 people a day are being diagnosed with T1D, I want to help people be aware, to know the signs, to participate in awareness. November is Diabetes awareness month…I have a plan, we will find a cure, I have to believe it will happen….
and by the way, if you didn’t enjoy this blog…I don’t give a fuck!