Wishing for Holland

If you have a child with special needs, at least three well-meaning individuals will give you a copy of the insipid piece of prose called "Welcome to Holland". I personally stared at it for 20-30 min every 3 hours in the broom closet of the PICU, while pumping breast milk. This tiny room contained a stool, a bedside table, a non-functional sink, and a copy of this tale-of-two-countries taped to the wall. To what? Encourage let-down? Hardly the thing mothers whose children are fighting for their lives need to see, but I felt like tearing it down would be impolite.

 Barf.

Barf.

I mean, in her defense, this was probably intended for the broad audience who (especially in 1987, when it was written) might think that having a child with a disability is the worst thing in the world. So, there's that. But my reaction to it was deep and, frankly, has never gone away.

I hate the part about mourning a dream. Maybe part of the reason it makes me so angry is because my dear friend lost one of her twins in utero less than a week after Atticus and Damien were born. (Her twins were due the day before mine.) I was wrestling with supporting her when I had two living babies and thinking how unfair it was and how she'd sell her soul to be in my place. And I mourned her Karina, too. During our pregnancies, I loved her babies to the point of obsession. I loved them almost as much as I loved my own, and losing Karina hurt. That was grief. Having Atticus was not a lost dream. It was a dream come true.

Which is not to say it wasn't hard. There were things I "mourned", but none of it was about Atticus himself. I was heartbroken that I wouldn't be serving in the Peace Corps again after retiring. I was depressed about being unable to work outside the home. I didn't want him to be in pain. I didn't want his life to be as difficult as it was. I desperately wished I could better understand his efforts at communicating, or just read his mind. I hated that all of our money was going towards medical/therapeutic stuff instead of family vacations. I worried about saving for his future while not cheating Damien and Everett out of an education. I agonized over balancing our days and my time with each child. I fucking hated the alarms at night, the hourly puking, and the tube-feeding messes. (I think ripping out the ceilings in our house might have been the only way to get rid of some of those stains.) But that was all about me, not about him as a person. If I had a magic wand, yes, I would have waved it to take away all of his medical issues, but I wouldn't have turned him into another child, the "typical" child I'd thought I was carrying. He was my Atticus, and he was perfect.

 Atticus loved being carried, but hated it when I stood still.

Atticus loved being carried, but hated it when I stood still.

And the other reason I hated the Holland metaphor is because of how deeply inaccurate I felt it was. If we lived in Holland, everything would be fine. But instead, I had a Dutch child (and two Italians as well), and we lived in Italy. The Italian government would pay for nice leather shoes, but not the wooden clogs Atticus needed. Everyone but him spoke Italian, and had dark hair and dark eyes to his blonde and blue. Everyone in Italy eats pasta and drinks wine and dunks bread in olive oil, but Atticus could only eat poffertjes, which we had to special order and pay for hand over fist. And while everyone else had a gondola and could easily navigate the canals, Atticus only had a bike that didn't work on water. Oh, and pot was illegal in Italy, so he couldn't use it to control his seizures, to beat this metaphorical dead horse into the ground.

I remember once hanging up the phone in angry tears (and can we just pause to talk about how unsatisfying it is to hang up a cell phone when you're angry? push the little button, no dramatic slamming of the receiver and hearing the bell jiggle inside the cradle) after talking with the health insurance company, and saying "If we lived in Holland, I wouldn't have to prove that repairing the hole inside of his head was medically necessary!" Italian health insurance, man. Screw that.

Atticus was different. He had needs that most kiddos don't. Things that came as easily as breathing to you and me were incredibly difficult for him. (Like, for example, breathing.) And many people didn't understand. And some people were unkind. And the world wasn't made for him. We didn't have the luxury of living in a community of people like him (since Atticus was the only one in the world with his two deletions), where playgrounds were designed for him and verbal communication wasn't expected and truly epic meltdowns were greeted with "we have a dark, quiet room in the back, if you'd like".

The only part of the simpering prose that I could relate to was "meeting new people".

 A small part of "Team Atticus"--teachers, therapists, and doctors who helped him live his best life, and who all fell deeply in love with him.

A small part of "Team Atticus"--teachers, therapists, and doctors who helped him live his best life, and who all fell deeply in love with him.

I met so many wonderful people. The people on "Team Atticus": his Early Intervention crew and his preschool crew and his private therapists and doctors. I never would have met them, and I became very close with many of them. And even the ones that I didn't have a truly personal relationship with, I still felt a deep connection: they loved my son almost as much as I did. And the moms I met. I'm not going to lie: it was hard sometimes, standing in the hallways of Damien's preschool with Atticus in my arms while other mothers planned playdates around us. (That was the first year, and his first preschool. For whatever reason, the mothers at his French school were much more accepting of Atticus.) I wanted to be part of the mommy club, but I just didn't fit in. But I began making friends with other parents in similar situations. A very small few I actually met in person, but the rest were through Facebook. There were a handful of kids with deletions on 2q that overlapped with Atticus's deletion. Through a wonderful organization called Unique, I found them, and we all became one big chromo-family, centered around loving our chromo-cuties while struggling to support them, our other children, and ourselves. And then there were parents whose children had very, very few things in common with Atticus, but nonetheless, they spent hours in waiting rooms and cried over missing their other children's activities.

After Atticus died, I left my Facebook groups. It hurt way too much. I loved those moms (and a few dads) and their children, but I was beyond jealous of every surgery scheduled, every IEP meeting, every concern over infection. I couldn't do it. And, obviously, I stopped having daily chats with Team Atticus at preschool pickup and drop off or PT appointments. I miss those people. I have kept in soft touch with some of them--I reach out when I'm feeling particularly brave (or lonely). And many of them have been incredibly kind and supportive, and have given meaningful gifts to my family or in honor of Atticus. But they're not a part of my daily life anymore, and sometimes that is painful.

I miss those friendships, and I also just miss that language. Let's face it: for 5 years, I was a "special needs mom" (or, to be more accurate, a "parent of a child with special and/or complex medical needs"). I was (and am) Damien and Everett's mom, but that was a part of my Dutch lifestyle. And I've lost that. I've lost my identity along with losing my precious Atticus. I long for Holland; for the Dutch children playing in the tulips and the parents chatting around them and the teams of people making sure no one gets stung by bees. I miss it because it's what I had when I still had Atticus. I miss it because I loved it.

 Atticus and one of his buddies, playing together at an all-abilities park in San Fransisco.

Atticus and one of his buddies, playing together at an all-abilities park in San Fransisco.

In a way, grief is like parenting a child with special needs. (Except this time, there is actual mourning.) I want to live in the Land of Grief. There, daily showers are not expected. It's normal to have no concept of time other than Before and After. It is understood that certain roads can never be driven down again. There is a small group of mothers who speak my language. There is a nation of people who understand the ways of crying when everyone else is asleep. 

But. Italy is still happening. Apparently, it's almost Easter. I need to figure out exactly when, so I'm not caught flat-footed like I was on St. Patrick's Day, with no Leprachaun gold in my pockets.

 Easter will come, whether I'm prepared or not. Also, Everett *does* have shoes. He'd just been trying new ones on at the store.

Easter will come, whether I'm prepared or not. Also, Everett *does* have shoes. He'd just been trying new ones on at the store.

Things are happening in Damien's life, in Everett's life, in everyone's life. Babies are born. Children go to school and come home. Friends fall in love. Marriages fall apart. I don't want to miss this all. I want to be there, to be here, to be truly present. It just takes so much energy. I do care, I really do. I love Damien and Everett more than life itself. I love my friends and family. Their life events and daily events do still matter to me. It's just that the siren song of the Land of Grief is ridiculously powerful. It takes all my strength not to drown in my whirlpool of tears, swallowed whole by Charybdis. I am constantly exhausted. But still I try. I have conversations about things other than Atticus. I listen rather than talking. I get out of bed and even off of the couch. I go places. I watch Damien and Everett and cheer them on, and participate when I can.

It is, by far, the hardest thing I have ever done. And yet I do it, every day.