Saturday, May 31, 2014

A Bit of History

You're probably wondering why I gathered you all here. 

My dad says this anytime he enters a crowded elevator or waiting room in attempt to bring some humor and break the ice, as if everyone were just waiting for his arrival. 

It's all I could think of when I wondered how in the world I would follow my last post which went a little viral. So many people have been dropping by this blog of mine, I didn't quite know what to make of it. 

But then I thought about what I'm looking for when I visit the blog after reading something from a new-to-me author. I want to know more about them, what makes them tick, what started the story, etc. 

Blogger's not real great at helping you search and find all that stuff, (and I've been too lazy and intimidated to make the switch to Wordpress) so let me help you out. 

Here is Eon's birthstory and let me give you a little background. When I was pregnant with him, I was sent to the perinatologist after the ultrasound tech detected echogenic cardiac foci (bright spots on his heart). Once there, my age (38) and his echogenic (bright) bowel gave us 1:20 odds that he'd have Down syndrome. His short, but still on the bottom of the "normal" range, femurs did not factor in. Given that our other kids are all very tall for their ages, this was a personal marker for us and I spent a good month or two of my pregnancy convinced that I was having a baby with Down syndrome. 

And then, I suppose because I was busy with the five kids we already had, I completely forgot about the risks and the odds and by the time I was in labor, Down syndrome was not even a thought. Please forgive my lack of people-first language in the post. I cringe when I read it now, but I was a complete newbie at the time and didn't know better. 

God is Good and Doubt are some posts about the faith journey early on the road with our boy. 

And then there's this Surprise post in which I grapple with the discovery our family is not growing the way I think it should. It's obvious in that post that God had already planted the seed in our hearts for adoption. Enough Kids? grows that idea a bit and explains our hearts more thoroughly. 

Adoption tells that our circumstances changed and we decided to take the leap. In going back to read that post I want to tell my former self that waiting for the littles to be potty trained is probably more wisdom than excuse, but too late now. 

We chose to adopt from Serbia because of it's semi-closed policy, meaning that we wouldn't get information on a child until our dossier was approved. In other words, we wouldn't have to pour over pictures and choose a child, something I was agonizing over before learning of Serbia. It's Official tells of the initial information we were given of Bogdan and when I read it I laugh and laugh that it says "good sleeper" because he was anything but one of those! 

From that post you can read the trail forward of his adoption story from when we were in country and his homecoming, including my health woes while there and subsequent hospitalization at home. 

He's been home fifteen months and our lives have been turned upside down, but we wouldn't trade him for the world. It has been hard, exhausting, outrageous, and beyond amazing. 

I also blog, occasionally, about my faith journey at Remnant of Grace.

That, in a blogger nutshell, is a bit of history for you new to the story. I hope you decide to stick around and enjoy the journey with us. 

Friday, May 23, 2014

To The Mother of The Adult Son With Down Syndrome in The Grocery Store Today:

Dear Mother,

I saw you as we were all on our way to check out. I noticed your son instantly. Big cowboy hat, American flag vest, short stature, almond-shaped eyes. Down syndrome. I almost followed you into your line, but that seemed like stalking, so I spied the lengths of the other lines first, only joining yours when it was the shortest. 

I was alone, stopping for a few necessities on my way home from work. I thought about saying something to you. But I stopped myself. Your son is so much older. You've been on this road a long time. Maybe you're tired of it all. Maybe you don't want to engage with a fresh-faced newbie like me. 

Worse, maybe you're resentful of this life you are forced to lead. You are of retirement age. Your friends are probably snowbirds who get to travel at will while you stay behind caring for a child who, in other circumstances, would have left the nest years ago. Maybe you wish you had more freedom at this stage of your life. Maybe if I talked to you, I'd come away discouraged. I'm feeling a little raw right now. I've heard too many naysayers tell me how cute they are now, but just wait...

So I stayed quiet. And watched. 

I saw your son point to the gum and say something to your husband, who seemed genuinely interested and continued the conversation before putting a protective arm around his shoulders. I watched as he smiled when he listened to him. I saw you laugh as you added your two cents to the conversation.

I decided then that maybe you were safe to approach, but I didn't know how. 

You smiled at me as I unloaded my cart, but still I didn't know what to say.

When a woman talked to your son about his hat, I pounced.

"Is he a magnet for attention?" I asked you.

You smiled and responded that he is and that he fancies himself Tim McGraw. I grinned and mentioned that I, too, noticed his awesome hat. 

Then I plunged ahead. 

"I have two boys with Down syndrome, too. Five and four. They're attention magnets, as well." 

You looked surprised and murmured, "How wonderful," but then looked away like you were trying to decide if you'd really heard me. Looking up again you clarified, "You have two boys...?"

"With Down syndrome, yes," I finished for you. "One homegrown and one adopted from Serbia."

Then you smiled broadly, and said conspiratorially, "They're really a lot of fun aren't they?" Before I had a chance to respond, you turned to fill your husband and son in on all you'd learned about me. 

We exchanged some other pleasantries as you finished your transaction and bid each other a good day. 

I bumped into you again outside at the cart corral and I felt then, as I did inside, that our brief interlude was filled with pregnant pauses as we were each searching for what we really wanted to communicate in the confines of social pleasantries with a stranger. 

I drove away thinking that I'd blown it. 

Because if I could do it again, dear mother, I would not hesitate to thank you. 

I would thank you for paving the road for my boys. 

I am not the best judge of ages, but I imagine it's safe to assume that when your son was born, at least one professional told you he'd be better off in an institution. It was a suggestion you clearly did not choose to follow. Thank you for that. Because of mothers like you, I didn't have to fight that battle from my own hospital bed. 

Thank you for being a warrior mom who learned to ignore the stares and whispers and who proudly shares her boy with the world. You are changing hearts and minds in your clear love and acceptance of him. He is changing hearts and minds just by being. Because of both of you, acceptance of my boys comes just a bit easier for others. 

Thank you for letting him have his own style, for encouraging his passion, for letting him shine in his cowboy hat and rocking vest. He's making people smile. And in so doing, without realizing it, he's being an advocate for my boys, too.  

Thank you for any part you played, no matter how small, in the enactment of, or amendments to, the Individuals with Disabilities Education Act. While we continue to fight for a quality education for our children at every IEP meeting, we don't have to fight for them to be educated at all or to attend school in the first place because of parents like you. 

Thank you for walking this road when you probably felt unbelievably alone, before the support of social media, before Google, before WebMD. Thank you for standing up for the rights of your child, for challenging the status quo, for following your mother's heart. 

In short, it sounds ridiculous to say, which is probably why I didn't, but thank you for loving your son. In accepting, raising, being proud of, and loving him, you not only paved the way for him, you paved the way for me. 

I am grateful.

And yes, they really are a lot of fun!

Monday, May 19, 2014

My Wonderful, Unfunny Vacation

If you're a Facebook friend of mine, you know that we went on vacation last week. We traveled a bazillion hours in our old, and decidedly uncomfortable, fifteen-passenger van from Indiana to Holden Beach, North Carolina. 
Eon, impatiently waiting for his turn to load in.
In a rare moment of genius early last fall, I rented us a house on the beach, rightly thinking the ocean may be the one vacation idea that would appeal to the broad range of ages and abilities we have in this family. There's nothing quite like thinking/hoping/praying that you got it right in the months/days/hours leading up to it, but still having that nagging little snitch of doubt in the back of your mind until that glorious moment you walk through the door of the home and the view literally causes you to take a step back and you know, with complete assurance, you did good!

View from our deck
The kids had a marvelous time which has only gotten better with the re-telling as memories often do. We learned tides and undertows, hunted shells, created castles of sand, and met new creatures. We played games and watched movies, and did lots and lots of laundry, just like home. This will be remembered as one of the best family vacations we've had. 

But behind all the funny Facebook posts and the happy pictures was another story. 

I tend to color my world with humor, not because I try to "spin" it, but simply because that's how I choose to see it. I'm blessed enough to be married to someone who can usually see the funny, even when it eludes me. Together, we choose to laugh when chaos abounds, which is much of the time in our house. 

But sometimes, laughter doesn't come until later. Sometimes, circumstances are just hard. 

Vacation with Bo was hard. 

All of his behaviors were magnified in this strange place away from home. He threw things. All the time. I don't know that we've really child-proofed our own house, necessarily. It's more like he's already broken everything breakable and we can relax knowing that all the damage has already been done. So in the vacation home, we put up everything breakable that was noticeably within reach, but he also climbs and kept finding more things to throw. He knocked pictures off of walls, threw the remote controls, chucked the Jenga pieces at the big screen TV, cleared water bottles off of end tables, etc. (Oh, crud. That reminds me. I don't think I rehung the pictures I stowed in the boys' room closet. Bummer.)

We were constantly on edge. 

We also forgot his booster seat to keep him contained during meals which means if we took our eyes off of him for one second, he was on the table throwing dishes or trying to get at the hanging light fixture. Even contained, he throws food...pre or post-chewed. Nothing like getting chucked in the head by a glob of chewed up corn dog. We have a rotating seating chart so we can share the "fun" of sitting directly in his path. 

Bo loved the ocean...which was right outside our back patio. Thankfully, the backdoor latch had a trick that only the older kids could figure out, but still, with that many people coming and going it was a constant refrain of, "Is the back door locked?" and a small surge of adrenaline while waiting for an affirmative answer. As he can climb out of the pack-n-play, I became OCD in my need to wake and check the door locks multiple times per night and dreamed every night that we lost him to the waves. 

Because he could see it through the windows, he cried most of the time he wasn't actually in the water. And by crying, I mean pinching, hitting, and kicking us at the same time to express his displeasure. When that failed to yield the desired result, he would simply wail and hit himself. Distraction was futile. 

In the water, he would sit and let the waves wash up to his belly. If a wave looked like it was coming in too fast, he stood up to greet it showing that he was able to learn a healthy respect for this giant bathtub which baffles me as we seem to be incapable of teaching him the simplest of things. He splashed and threw sand and had a great time until he grew bored and tried to run away, repeatedly. He is a very fast little boy. We are very tired parents. 

The details are softening, even now, a few days home. I've no doubt if I didn't write this post, we'd minimize it in our minds. But I don't want to forget. Sometimes, I think it's good to acknowledge that life with special needs is harder than without. I need to recognize that there is a reason that I'm tired. I need you to know that if I seem defensive or edgy, I could use some extra grace. Because while I laugh and enjoy and love this life, sometimes it's hard.

We will laugh about it all again. In fact, we stopped at Cracker Barrel on the way home. Predictably, it was a disaster. Bo got ahold of the peg board and threw it, scattering pegs across the restaurant. Little people changed their orders a thousand times. Middle people kept leaving the table for potty breaks. Bo fed himself really well until we let our guard down and then chucked food which was horrifying. My oldest and I spent more time on the floor picking up after him than we did eating and gulped our food down at the last second. Finally, the big kids took everyone to the van so we could pay (we're big tippers, by the way. I always try to minimize the awful impression we leave by a big tip) and I looked at Shawn and smirked, "You just brought us here so we'd be so traumatized we wouldn't want to stop the rest of the way home."
 "Bingo!" he laughed. 

Sometimes we laugh because of the special needs in this family, and sometimes, it's in spite of them. But always, even in the hard and the unfunny, we are grateful that we get to do this together. I wouldn't trade any of these people.