I don’t actually live in Holland

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.

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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.

 

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