I’m not. It’s not something I have ever aspired to be, it’s not something I do in my free time, it’s just not me really… first of all my grammar can be atrocious, forget punctuation – I know I used that ellipsis all wrong and I don’t even actually care – and I love a longer than life run on sentence. So I’m not really sure what my thought process really is regarding having a blog. It’s something I’ve tried and failed a ridiculous amount of times. My motivation most times I’ve tried to do this stems from being an introvert of sorts, I thrive in one on one situations, put me in a group or worse a social setting where I don’t know a single soul and I just shrink into a little corner and people watch until I can sneak out and go home. There’s a certain level of loneliness that comes with being that way because I’m just not one of those women who easily makes friends and this past year of being in a new place has produced not a single, solitary friendship and my days are consumed by my kids, and Drs appointments, and my husband when he is here and my thoughts. And it’s just lonely as fuck some days to just be in my head so much, I have so many thoughts swirling around and I want to, I need to get them out, but I hesitate to talk to anyone I know because I don’t want to burden anyone with my stuff. So of course the logical next step would be to create a blog where I, the non-writer, puts all her feelings out into this public domain. I don’t really know, but I know I need some sort of outlet, I need a place to write down my thoughts no matter how repetitive, ridiculous, sad, depressing, or crazy they may sound. I need to be able to say how fucking unfair it is that my son was born with this rare thing and in the same sentence be able to say how amazingly blessed I am to have two beautiful boys that light up my world. I think I need a place like that. And the place may be a blog or maybe the inside of a notebook, or maybe I’ll find that it’s easier and better to keep everything inside my head. I don’t really know. But I think I need a place.
In fact, we don’t live anywhere close to Holland, unless while I typed this post Miami magically detached itself from the USA and floated across the Atlantic, around the UK and reattached itself to the Netherlands.
I’ve never been to Holland but I assume that Miami and Holland have very little in common besides both places being mentioned in this post. But we’re in Holland, a figurative Holland of sorts, a place we never thought we’d end up, a place we never planned to be, but here we are in “Holland.”
Months and months ago when I was trying to navigate through what felt like the worst, most awful, sad, horrible and just fucking shitty situation that life could have dealt us a friend sent me a poem titled “Welcome to Holland.” My first thought was, seriously?!, Welcome to Holland, why the hell would I want to read a poem about a trip to Holland. Then I read it, and read it again, and again because for the first time in weeks I felt like every emotion I was feeling, every thought I had swirling around in my head was perfectly summed up in the words of a poem about planning a vacation to Italy and ending up in Holland.
Did you read the poem? Read it. You should. It’s good.
It’s obviously not really about Italy, or Holland, or how awful air travel has gotten. It’s all the most perfect metaphor for an experience that thankfully not many parents get to experience. It’s about one of the most heartbreaking, soul crushing, stressful, lonely, but special and amazingly beautiful and rewarding experiences that only some parents know.
Our 9 month old son was born with CHARGE syndrome, a rare genetic syndrome that affects 1 in every 8,000-10,000 births. CHARGE comes with a whole lot of complex medical issues, you can read a little bit more about it all here. Our sweet boy has bilateral coloboma’s of the optic nerve, profound hearing loss, CHD (coarctation of the aorta and a bicuspid aortic valve), laryngomalacia, and he’s been fitted with a fancy schmancy tracheostomy and GJ tube. Up until about a month ago he was considered failure to thrive and was sitting somewhere in the negative percentiles of the infant growth chart. He spent the first 6 months of his life in a hospital and so he has significant developmental delays. And he’s the sweetest and absolute cutest little chubby baby boy ever, and he is the happiest, and he’s just so damn resilient, as most little ones are, and just the absolute strongest little human I’ve ever seen.
So yup, we’re in Holland. Our good days are starting to outnumber the bad, each day is new and different and challenging and spectacular and magical. There are moments that I wish we weren’t here, the days where I feel like I don’t know what I’m doing, where I wonder if I am enough for our sweet boy and I cry because we didn’t land in the place we thought we would land, and those are the hard days. But the good days, they are the ones filled with sweet baby smiles and milestones and good news, where I spout off complicated medical jargon like a pro, the days where I feel like I have it all together, I have it all figured out.