Thursday, January 24, 2013

I’m in Holland.

I have a friend who when she came back from a blogging lull over the summer, she explained that she had trouble writing prior to that because the one thing she most wanted to talk about she couldn’t. That one thing was a wonderfully little boy in her belly who is now out in the world soaking up the love of his big sisters along with everyone else who meets him! (And I haven’t gotten to do that yet, but I have no doubt I will love on him when I do.) She wasn’t at a point in her pregnancy where she was ready to take it publicly to the blog.

I’m feeling similarly. No, I am not pregnant. Goodness gracious, I could not handle that! So hush, don’t even think that.

But life has been full. There’s been so much I wanted to write, but I can’t find the words or the space. It’s been raw and blurry. Hard lows and big teary highs that bring you to your knees with a mixture of hope and weariness. I’ve wanted to reach outwards, tell my story, shout to the world. And I’ve wanted to curl up into a ball into the back corner of my closet where it’s nice and dark and where I’m convinced if I hugged my knees tight enough no one would see me.

I have reached out to close friends. I am so amazing grateful for the support and love from a handful of people who know where I’ve found myself. Some know because they’ve been there or are there. Some because they are the friends who get the emergency texts, the ones I’m typing before I’ve even realized I’m typing, the desperate pleas I may not make it through this day, this hurts too much – please share this hurt with me. And some know because they’ve read the emails I poured myself into, typing while crying my eyes out in Panera Bread. (For real, that happened.)

So where exactly am I? It’s hard to admit. It hurts my heart to say aloud. I’ve whispered it. I’ve thought about hiding or ignoring it, keeping it my little secret that most would never need to know. But, well, that’s not me. If you’ve read this blog for any amount of time, I spill my guts. I don’t do so without discrimination though, and this is a story I’ve decided I need to tell for me, my family, and for anyone else is in the same place. Because sometimes just knowing someone else is there, reading someone else’s words and saying ohmygod, it’s not just me is what gets you through the day.

I’m in Holland.

There it is. I said it. That’s where I am.

Welcome to Holland is a story written by Emily Perl Kingsley in 1987 about having a child with Down’s Syndrome, and it is now widely used by well-meaning organizations and individuals to support parents with children of all sorts of special needs. Please go read it if you are unfamiliar. It’s short. I’ll wait.

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The reactions to the story are widespread. If you Google it, you will find a lot of parents who hated it and resented it for its positive spin or it glossing over the struggles. Others find it too pessimistic, the thought of always being hurt that you aren’t in Italy I think is perhaps too much to bear. I can understand all of the reactions. I particularly like this response and spin-off to it, Welcome to Amsterdam International. Although Welcome to Holland was originally written about having a child with Down’s Syndrome, this story now reaches parents with children of extremely varied abilities and needs  It only makes sense that their responses and experiences would be just as varied.

There’s this part of me that feels like a fake, that feels like I’m not allowed to say I’m in Holland. There are parents and children there with much greater needs than ours. There’s a part of me that worries people will think badly of my son if we’re public about our time in Holland or think badly of me because perhaps we don’t really need to be in Holland and it’s just my bad parenting or I’m being overly dramatic. There’s a big part of me that has felt like owning our place in Holland cheapens the experience of those who have held residence there much longer than us. After reading this interview with the author, the history of the story and how grateful she is for the ways her story resonates with people in a large variety of situations, I feel a little better about claiming my place in Holland.

I’ve talked a little about my older son’s challenges before, like here and here. The last month and a half have been an exhausting, emotional chaotic mess of managing daily life (which is more like crisis management), meeting with teachers, finding doctors or therapists doctor’s appointments, evaluations, speech and OT (one kid gets one, one gets the other), and a list of constant questions of what else we should we be doing or what’s next and how we’re going to make it happen schedule-wise and financially. We haven’t gotten official reports. Diagnoses don’t matter that much right now. We’re just trying to find tools to help us help our kids and help our kids help themselves. One of the challenging parts is that this is a mix of both of our children.

For a while we were managing, carefully balancing the chaos and the needs of everyone involved. Then things collapsed, and we picked them back up. And now we seem to be in a pattern of managing for a period of time until it all comes crashing down and we try to start again. It’s exhausting. It’s isolating. It’s terrifying. It’s emotionally draining. It’s downright heartbreaking.

But, there is much gratitude. And I cling to it most days. Gratitude for everything my boys can do and where they do excel. Gratitude for the ways I can see them working and growing. Gratitude for the fact that some of the things that give them the most difficulty will someday be their biggest strengths. Gratitude for friends who have been there and share their story and their support. Gratitude that most people have no idea what we struggle with because of how capable and successful the kids are in some areas of their life. I refuse to feel guilt about this or let it convince me that our struggles don’t count because they are invisible to so many.

*I say they because they have each been having their own challenges, but they are two entirely different people with different needs and are in different places as far as what they can do and what they need.

This is me sharing my truth right now. I will continue to share pieces of this journey, because I hope it can benefit someone and because it helps me to share it. We will continue to be blessed, stretched, challenged, and rooted in love and grace on this journey. Love, grace, and courage.

Tuesday, January 1, 2013

This kid has made it around the sun 6 times!

My boy is 6. It’s crazy. Every year seems crazy. He just keeps growing.

He attends a really awesome Montessori school, and one of their traditions is that they have each child on their birthday carry a replica of the Earth in their hands and walk around the replica of the sun to represent the years they’ve been alive. If parents send in pictures from each year, they share those with each orbit of the sun.

He helped me pick out the pictures below for his own walks around the sun. Birth, 1 year, 2 years, 3 years, 4 years, 5 years.

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As he explained to me, we don’t need a picture of him now because well he looks like he does now! But I had to grab a couple for the blog and for me when I look back on this post. Here is my big bad 6 year old!

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I made Rainbow Rice Krispie Treats for his birthday celebration at school. A little time consuming, but easy and totally worth it. I’ll be sure to take some more pictures and throw them up on Facebook or Twitter when we cut them for Wednesday. But in the meantime, we are celebrating his actual birthday today!

I’ve been meaning to get a reusable birthday banner for years and never figured it out. This year, thanks to Dream Child Studio on Etsy and abigailshopedesigns on etsy and their crazy fast shipping for me, I was able to order just a few days ago after my brain had recovered from Christmas. We also got a special birthday crown to add to our birthday traditions. (ETA – unfortunately the birthday crown didn’t make it in time, but to no fault of Dream Child Studio… not sure what happened with the post office – it’s somewhere in Washington now. It started in Wisconsin and was supposed to go to NJ. Washington state is not on the way. Hopefully it’ll get here so B can wear it to his school celebration, if not to his birthday party with his friends in two weeks).

After their first birthday, we haven’t done a lot as far as birthday traditions. We threw things together at the last minute each year. Ben’s is hard being so close to Christmas, and well after haphazardly throwing his together we never felt like we should more for Elijah. This year is my attempt to finally start a few simple traditions that we can do for everyone’s birthday to make them the star of the day even if it’s a quiet day at home.

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We’ve created a little birthday table, inspired by this blog, with pictures of the birthday child as an infant along with our candles to represent the sun and the numbers of times he’s circled it like in the Montessori tradition. I’d honestly love to get a wooden birthday ring which is from the Waldorf tradition, but I couldn’t lay out the money for that right now. We’ve added his gifts to this table as well. He has a gift from his godmother who lives a few states away… and his gift from us – some gymnastics rings for the playset outside! (We have a set with the trapeze bar in the middle, but he wants to move up to the straight rings like he practices on in the big kid class at gymnastics. Seriously, 6-12 y/o boys! It’s so crazy to see my baby with those big kids.

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Today, we will celebrate with a super rare trip to the mall! (I know, it’s funny, but we live 45 minutes away and very rarely need to go to a mall). Ben loves legos and has never been to a Lego store! So that is the main purpose. We’ll also probably eat out, because he loves to eat out as well, but we’re going to be flexible and just see how the day goes and what the Birthday boy has in mind.

We celebrate your birth
And your place on the earth.
May the sun, moon, and stars
Bring you peace where you are.