I read various blogs weekly and sit back and admire their writing style, their tenacity to bare it all and the way in which the words seem to slip off the page and seep into my brain, creating a permanent watermark on my conscious. I long to be one of "those writers." One in which people gather memories of my words, feel my emotions and gather inspiration for their own struggles and life. I fear writing here. I fear baring it all and being vulnerable. Those who know me, or I should say the few who know me well, can attest to how I struggle to communicate, how it's a daily struggle for me to be transparent in my emotions and thoughts. I've always shut down as a way of coping. Having been through 92 surgeries and literally having lived years in the hospital will cause one develop a sense of isolation and withdrawal for protection that is hard to break. I fear writing this blog and being perceived as trying to gather sympathy or for anyone to feel sorry for me. I'm not sorry for me and I don't want anyone else to be. I've travelled the emotional side of this journey, of my struggle to breathe my whole life and have kept the deepest, darkest struggles to myself. There were no blogs talking about what it feels like to be internally suffocating, on how to live life planning your day to day actions around if you can breath through them or not. As social media grows it is becoming easier to connect to similar situations, however I still lack finding raw emotion. So I'm throwing caution to the wind and letting it all out, I'm exposing all my cracks, scars and blisters for you to see. Along with it I hope you will feel my emotions and see how grateful I am to get to live this life. How I'm beyond blessed to be able to teach my kids how not to be a bully, having been bullied for several years of my life. I hope you will come away from this with appreciation for the smallest of things, like the six breaths you just took without thinking about in the last two sentences you just read.
I received an unexpected note in a package from a friend. A friend, whom I've never met in person, that inspires me daily on how to be a healthy and wonderful mother just as she is herself. It read "you inspire me daily." I still have it. It's on the flour canister in my kitchen where I read it multiple times a day. I cried when I received it. I received it on a day where I was feeling defeated and struggling with air. And yet, despite my struggling to breath, somehow I still managed to inspire someone. It was the smallest of gestures that made, and continues to make, a huge difference.
Since I last wrote I have been fortunate to have my trach removed. It was not a necessarily enjoyable process but it was necessary to do it. My quality of life has improved, however recently I'm back to not having enough air to get through a sentence. That brings me to where I am right now, in a hotel awaiting surgery tomorrow morning. I'm hoping I get more time out of this one and can get through the holidays without having to come back. Having to say goodbye to my kids suck. It really fucking sucks. To hold them as they silently cry, trying to be "strong for mommy," it breaks me in a way that can't be fixed. I hope one day they realize and can appreciate that I'm doing this for them, so I can be the type of mom they need me to be. I'm doing this so I have enough breath, everyday for the rest of my life, to tell them I love them. Because those nine months where I never knew each day if my kids would actually hear my voice say "I love you" were heart wrenching. I'm doing this to be strong for them so they don't have to be strong for me.
PS. More on my intense repairs this summer that resulted in my trach being removed to come soon.
Thank you for being here with me.