I was recently asked by a family member to write a post detailing my experience of moving from “Holland”  to “Italy” after Charlotte’s birth. But the truth is, I can’t do that. I can’t write that post because I am not, and probably never will be, living in Italy.

It’s more like I am now raising our “Italian” daughter in Holland. Holland is our home, and as the essay says, They’ve landed in Holland and there you must stay.

When Grayson was a few months old, I was thrown into the world of special needs parenting. Unfortunately, when I was thrown into that world, there wasn’t a whole lot of guidance from the medical community. We were sent to specialist after specialist, some who were no help at all, and some who provided huge pieces of the diagnostic puzzle. I relied on Google, and the hours Grayson slept so I could read and research his symptoms and try to piece together my own diagnosis of my baby who just wasn’t right. Because I felt like I had to figure so much of this world out on my own, or make an effort to make connections with people who could guide me, I really feel a sense of ownership for life as it is today. While I’m certainly not saying I did it all on my own, because that couldn’t be farther from the truth, I am proud of the many hours I have spent doing research,
making connections, and working to give Grayson the best life possible.

We started therapy when Grayson was 4 months old. I loved therapy, because it felt like we were trying to fix things, not just hand over a copay in exchange  for a crop of new questions, like we did at every doctors appointment. But therapy didn’t fix much; it gave us goals and skills to work on, but progress was so slow and new issues that arose always outnumbered the amount of progress gained. Any semblance of a life in Italy dissipated as the months went on and Grayson’s needs became more complex.

So I’ve made my home in Holland. I’ve learned the language of medically complex families, my schedule revolves around doctors appointments, Grayson’s school and activities that he is able to participate in. While every waking moment is no longer focused on figuring out what was wrong with my baby and trying to make him better, the task of making him comfortable and content still occupies a lot of my thoughts and time. Over time, I’ve grown used to this life, this place. Sometimes it’s not comfortable, or pleasant, but it’s home.

And then there’s my little “Italian”, my healthy child. My precious little daughter will also grow up in Holland- a place where things aren’t always fair, and where she will undoubtedly have to make sacrifices because of her brother. She will grow up with a mother who will do anything to help her be successful, but who also has the perspective that so much of what the world places importance on just doesn’t matter. I can already see understanding and concern in Charlotte’s eyes; at 6 months old, she doesn’t know what Grayson’s retching, vomiting and seizing means, but witnessing it worries her. She loves her brother and  loves watching him, and one of my biggest prayers is that Grayson lives long enough for Charlotte to really know and remember him.

When I’m doing things just for Charlotte, “Italian” things, it literally feels foreign. Forms with lines for medical history and current medications are left blank, days pass and milestones are met without a parade of therapists in the house, and there are no tubes to contend with. While it’s easier, and certainly more ideal, it’s foreign, and I feel out of place in that world.

Some of the most challenging parts of this life are the almost daily decisions about “normal” activities, and if they are plausible for our family. We spent all day Saturday away from home, shopping for clothes for family pictures and then the rest of the day with the kids’ cousins and grandparents. It was a wonderful family day, but Grayson was sound asleep by the time we got home at 5:00 so we put him straight to bed. Then he had a bad seizure Sunday morning. Was the seizure a result of him being too tired and overstimulated on Saturday? Possibly. Was it worth it? I’m not sure. Our family on Ryan’s side is going to the beach this week; originally I was planning on taking the kids for a night but I changed my mind. I’m afraid it would be too hot and too much change in routine for both Grayson and Charlotte.

I want so much for my children to get out in the world and do things- normal things- but for Grayson, there’s always a price to pay. And while I want these experiences, I have to remember they are mostly for my benefit, not his. Grayson is content (prefers) to be at home or school, surrounded what is comfortable and familiar. He likes his routine, his music, and his early bedtime. He doesn’t care about going to the beach, seeing the latest movie, or doing anything other than what he did the day before, or the day before that. He likes what is predictable, because his body and future are not.

Right now, today, I cling to and embrace our little life in Holland. It’s given me so many good things- perspective, empathy, friends, and the ability to count each day with Grayson as a precious gift.