I'm Coming Home...

Happy Monday, friends! I'm happy to report we've purchased the tickets for our next trip back to the states, and will be home for an entire four weeks this September. Of course four weeks seems like a lot of time, until you factor in traveling back and forth to multiple locations for a jam-packed schedule of doctor appointments. On top of that, we need to buy a house (or at least get the process rolling). We'll be busy, busy. It's all very exciting and very, very scary. I'm not a person who handles change very well; I know that must sound incredibly strange coming from a person who packed up her entire life (and toddler) and moved to the Middle East, but it's the truth. I am, however, mostly excited to start this next chapter in our lives. And if I'm a little scared while we do it, well, that's fine too. 

So here's the plan: Liam and I will be moving back in April of next year and DeMarko will follow us the following April. As much as we all want to come home together, it just doesn't make financial sense to do so. We refuse to have sacrificed so much over the past five years, only to be living paycheck to paycheck six months after we move home. Not to mention the prospect of buying our first home AND changing jobs only a few months later is rather terrifying. 

So Liam and I will move home in order to take care of the couple of surgeries he'll need around this time next year (orthopaedic and urological), and then we'll get him enrolled in preschool. We kept thinking he would be starting kindergarten next fall, until I realized his November birthday actually means he'll start the following year. I can't tell you how perfect this is for him. That will give him an entire year of preschool to learn how to get around on his own (whether it be with a walker or a wheelchair), and will also allow us time to figure out the "bathroom situation," and a few other things. I've been working really hard at getting him where he needs to be in regards to writing and reading and counting; that way he can spend his entire year of preschool focusing on socializing, becoming more independent, and getting around on his own. And apparently a new special needs preschool was just built in O'Fallon, so we're thinking that may be the way to go, at least for preschool. Then once he's ready for kindergarten (and beyond), we plan on having him in mainstream classes.

In other exciting news, we bought Liam's first wheelchair. We found a great deal online (what did anyone ever do before ebay?!), and it will be waiting for him when we arrive in Chicago this fall. He'll get fitted for his "fancy" wheelchair during our visit home, but apparently it takes FOREVER for the insurance paperwork to be approved (i.e. eight months), so he won't actually get that one until we move home next year. But I'm sure it will be nice to have a spare, and at least we got a great deal on it.

My baby is growing up way too fast, but hooray for independence!

P.s. If you've been keeping up with Kate and Gavin's story, you're going to want to read this.

The PlasmaCar: Cool for Kids With or Without Special Needs

Liam finally got to take his new wheels out for a spin. He absolutely loved it, although, next time we'll know that when he wears shorts, his legs tend to slide off the car a bit. Typically when we go out, Liam is in a stroller. When he was younger, he was completely content with this, since he's been an observer, a people watcher, from the moment he was born. But as he's getting older, he's no longer satisfied sitting on the sidelines. He wants to join in. 

Enter the award-winning PlasmaCar. It has to be one of the coolest things ever invented. I don't think I've ever seen Liam so free. It's not even specifically made for kids with low muscle tone or paralysis of the legs or feet, but it sure works perfectly, at least for Liam. And, seriously, you can't beat the $50 price tag, especially when so many bikes modified for children with special needs can cost well into the thousands.There is some scientific explanation (that I don't quite understand) having to do with inertia, force, and friction, allowing the car to move without a battery or motor, but here's how it works in a nutshell: the car goes when you turn the wheel back and forth. Seriously, that's it. No movement of the legs or feet required. We have tile floors in our apartment, so he is able to drive around inside with no problems. I know some of the reviewers said they had a hard time with it outside on cement, but the trail we took Liam to drive on had rather smooth cement, so we had no problems outside.
 

My Mom sent the car to Liam as an Easter present, and the second he saw the box, he insisted I put it together immediately. By the way: it was super easy and took me less than 10 minutes.

This crazy child was so excited -- he couldn't even be bothered to put clothes on.

Liam is completely and utterly obsessed with the thing. I have caught him, on several occasions, giving it hugs and kisses and telling it "goodnight." He also makes it take naps: Nap time, Car. Night-night.

I didn't even know it was possible for him to get this excited over anything. He's rather low-key. I'm usually disappointed on Christmas, Easter, and his birthday because he is sooooo not dramatic when it comes to opening gifts. I often tell him he needs to take lessons from his Uncle Seanie. My brother used to open a present, jump around, and scream "Oh my God. Oh my God!" For now I guess this is the closest we'll get. I'll take it.

Thanks, Grandma!

10 Ways Liam (Successfully) Avoids Going To Sleep At Bedtime

Ideally, this is how Liam's bedtime routine is supposed to work: Liam and I cuddle in bed, read one of his favorite books, and say good-night. Once he falls asleep, I sneak out and get to start my night: facebook, reading, emails, The Real Housewives of (enter any city here). My God, do I love my time alone at night. Sometimes, however, getting Liam to sleep and me out of his room takes longer than usual. Here are ten ways he makes sure I feel like it's never going to end:

1. He starts talking in sentences, something he very rarely does during the daytime: Let's get out of here, please Mommy. Turn on the light.

2. He practices spelling his words: F-R-O-G spells FROG. How 'bout...alligator? A-L-L-I-G-A-T-O-R spells ALLIGATOR. How 'bout... etc, etc, etc.

3. Holds out his arms and says, "Hugs, please" and "kiss, please," over and over again.

4. Starts making fart sounds with his hands.

5. Pretends something is in his eye; although, this is also a technique he uses during the day. I have watched this child lie on the floor, push his bike onto his legs, and yell "help, help." 

6. Pretends he is a scary monster: roooaaaarrrrrrr!!! (And he is seriously the cutest monster I've ever seen).

7. Talks to the Sesame Street Characters on his walls: Hi, Elmo. E-L-M-O spells Elmo. O is a circle.

8. If I'm reading my Kindle next to him, he starts reading some of the words, saying the page numbers, or yelling "too bright, too bright."

9. Asks to read a (specific) book again: All the World, please Mommy? Alexander, please Mommy? (Thank God he is over his obsession with Blue's Clues books. I don't think I could've handled one more night reading those poorly written books).

10. He suddenly decides his lips are chapped: Chapstick, please Mommy! (I can't resist him when he's polite AND puts my name at the end of his requests).

These techniques of his NEVER FAIL. And I thought this child had me wrapped around his little finger before he started talking?! I'm in trouble.

Roooaaaarrrrrr!!!

In other news: In my last post, I mentioned donating to my cousin's special needs classroom in honor of sweet, sweet Gavin. My cousin sent me a note saying her students were so moved by Gavin's story, they decided to make birthday cards and buy books for another child with special needs. The love is spreading, friends, and Gavin's gentle spirit is living on. It makes my heart so happy.

Chasing Rainbows: In Honor Of Warrior Mama, Kate, and her Superhero Gavin

Photo Credit: Kate Leong

I have been following Kate Leong's blog, Chasing Rainbows, for a few months now. I don't know the family personally, but I've been continually inspired by them. Kate writes a lot about her 5 year old son, Gavin, who often reminded me of Liam, in the same way that most kids with special needs do. There is an extra twinkle in their eyes, as if their souls are older, wiser, closer to God in some unexplainable way. 

On Wednesday, Gavin stopped breathing and went into cardiac arrest. Yesterday, on Kate's 43rd birthday, he was officially pronounced dead.

A week ago Kate was posting videos of Gavin dancing for the first time. Today, they are donating his organs. It is simply too much to bear, and yet. And yet. Gavin's warrior Mama carries on. Kate posted this on her FB page yesterday: 

Ed and I will be announcing our choices for "in lieu of flowers" donations to honor Gavin in a few days, but today is my birthday and this is all about me. I've come up with a special, totally FREE way to honor my sweet son who could inspire the most profound emotion without ever saying a word. I'm asking you to help someone... document it with words and or a photo... and place it on the Chasing Rainbows Facebook Page. Then be sure to check the page often to get inspired by the outpouring of love. Here are some great ideas for you... Find a special needs classroom in your community. These are usually low funded and always looking for donations. Perhaps you have toys your kids don't play with anymore that could be used in the classroom or during therapy. Random crayons that are laying around. I know we always needed rug gripper to place under Gavin's behind when he sat - that's a good need. Do you know a special needs Mom in your neighborhood? Church? School? Tell her you'd like to make dinner for her family. What night would work? Then tell her the only requirement is they have to give a "cheers toast" to Gavin during dinner. Help someone struggling to unload groceries into their car in the rain. Donate clothes to a women's shelter. Check with your local children's hospital for volunteer opportunities - even if it's just for two hours of your life. Save all of your magazines and bring a big stash to your local hospital. You have no idea how helpful that is to parents who spend days, weeks or months (as I did when Gavin was a baby) sitting in their child's hospital room. These are just some ideas... be creative! And think of Gavin when you do it. Share his story with the person you are blessing. Tell them that Gavin Leong changed the world with little acts of courage, determination and a sweet smile... without ever saying a word. And then ask them to pay it forward to honor his legacy. This would be the best birthday gift you could give me. There is no time frame - you could post something today or a year from now or five years from now. Thank you for helping me to honor my amazing little boy. And feel free to share this anywhere you want!

So, in honor of Gavin, we donated to my cousin Shannon's classroom (she happens to be a special education teacher). 

Kate and her husband's grace and strenghth during these last few unimaginable days has been nothing less than heroic. My heart is breaking for them. 

About an hour ago, Superhero Gavin was off to save lives.  

Photo Credit: Kate Leong

Perspective

“A true war story is never moral. It does not instruct, nor encourage virtue, nor suggest models of proper human behavior, nor restrain men from doing the things men have always done. If a story seems moral, do not believe it. If at the end of a war story you feel uplifted, or if you feel that some small bit of rectitude has been salvaged from the larger waste, then you have been made the victim of a very old and terrible lie. There is no rectitude whatsoever. There is no virtue. As a first rule of thumb, therefore, you can tell a true war story by its absolute and uncompromising allegiance to obscenity and evil.” 
― Tim O'Brien, The Things They Carried 
  

Liam and I moved to Kuwait during one of the hottest months of the year. Like 130 degrees hot. Heat so oppressive it almost takes your breath away. 

Each time I'd leave our apartment during those first few months, I'd think Ugh! I just spent 30 minutes straightening my hair and it's frizzing already. AND my make-up is melting off my face. Now, mind you, this was all in the course of the few feet it took to get from our front door to the air-conditioned car. And then, inevitably, a little voice would pop into my head and say, "shut up, you idiot." (Ummm, yeah, we'll talk about my negative internal dialogue some other time). And I'd immediately get an image of my brother, a marine who served multiple deployments in Iraq and Afghanistan, in this heat. In this heat wearing heavy boots and fatigues and a flak jacket, with no air conditioning, just trying to stay alive. Talk about getting a little perspective.

It's hard to live in this part of the world and not think about the men and women serving our country. I find myself thinking about them often, actually. I thought about them while I was at the embassy recently getting my passport renewed. Just the thought of going to a U.S. Embassy makes me nervous. I was shaking so badly I could barely manage to hold onto my paperwork. I thought about them the time I was absolutely sure someone had put a bomb on the back of our SUV, after a truck pulled behind us for a minute and then went speeding off. Or the time we were driving and there was a McDonald's bag placed perfectly in the middle of the road and my husband and I looked at each other and he said, "better drive around it...just in case." Or the time I thought a firecracker was a bomb. Or the time I thought the thunder shaking our apartment was a bomb. Hmmm...I'm beginning to notice a pattern here. Truth be told, this anxiety of mine worsens when I read novels set in Afghanistan or watch movies like ZERO DARK THIRTY, so I've realized I can no longer do that while I'm in this part of the world -- unless I want to continue thinking the buzzer on our dryer is a bomb getting ready to explode. Of course, the reality of this happening in Kuwait is not likely, but that doesn't stop me from thinking these irrational thoughts. Our armed forces go through extensive training, of course, and I'm sure learn how to best channel the adrenaline and anxiety that combat brings, in order to use it to their advantage, but that doesn't mean their minds and hearts aren't forever changed by it. It does not mean that it doesn't take its toll. Saying thank you doesn't even seem close to sufficient, but because I don't have any other words, thank you.

If you're interested in one marine's perspective on the wars in Iraq and Afghanistan, check out my brother's new blog: WarTorn 0331. A machine gunner who has served multiple deployments in Iraq and Afghanistan, Sean writes about his experiences with a rawness and authenticity that haunts you long after you've left the page. As a writer, he is to the Iraq and Afghanistan Wars what Tim O'Brien was to Vietnam. He first sent me his writing, scribbled on ten small pieces of paper, during the Summer of 2011, while he was deployed in Afghanistan. I was on my way out when the mailman arrived; I opened his letter with the intention of taking a quick peek at it, but found myself standing in the doorway reading every single word. And then reading every single word again. I was completely taken in with the first sentence. You will be too.

Step by Step...with video of Liam walking!

9.27.12

You did it. You finally did it! We have been waiting for this day for over three years. Three years! Three and a half years since those gut-wrenching words were uttered, words that changed everything: we’ve found some deformities. Today, what seemed like just an ordinary Thursday, you did something we once thought was impossible: you took your first steps.

Step by step we’ve made our way on this journey together – this journey that began almost four years ago, with a very anxious soon-to-be Mama staring in disbelief at a screaming YES glaring back at her. Almost four years ago since making that very long-distance phone call to Daddy saying, I have to tell you something, but I’m not going to be able to say the words out loud. Just one month shy of your third birthday, and you did it.

My heart was so full tonight that my body simply couldn’t take it. As I lay in bed, I heaved and heaved thinking about the gravity of what you had accomplished. I sobbed reflecting back on those first few months after receiving the diagnosis, when I couldn’t even look at a little boy on a bicycle, or a baby standing on his wobbly, little legs without feeling a tightening in my chest. Without feeling like I was suffocating. Guilt at that time was a tangible thing. Anger was palpable. My body had betrayed me.

It wasn’t until first stepping foot in the spina bifida clinic, when you were three weeks old, that I truly realized the severity of what spina bifida and hydrocephalus meant: wheelchairs and braces and catheters and shunts and surgeries. All of the books and articles I had read during the second part of my pregnancy couldn’t have prepared me for what met me that day: spina bifida at every age. It was like your entire life flashed right before my very eyes. I felt the wind knocked out of me walking into the clinic that day. Your Auntie Maura somehow sensed what I was feeling, and simply sat quietly next to me, while I tried to catch my breath before making my way to the front desk. But I didn’t know then what I know now.

And now, here you are, standing on your own two wobbly legs. And here I am, knowing what I didn’t know then: that you are absolutely, positively who you were meant to be. You are perfect and bright and magical. You are an old soul in a young body. You have taught me and Daddy and our family more than we could have ever learned without you in our lives. Do you know that when your cousins play house one of them pretends to be a kid with spina bifida? Yep. It’s true. You have made clubbed feet and braces and shunts normal, which in turn has taught them to accept other kids who are different from themselves. You have changed the definition of disabled for us. Spina bifida doesn’t define you, it’s a part of you. Just another facet of the remarkable human being that you are. It has been a long three years, filled with therapy and doctor appointments and surgeries, but you did it, my angel baby. You did it.



***Update: I was finally able to get a video of Liam walking. He typically moves a bit faster and takes larger strides, but tends to get a little camera shy the second I hit Record. He has made even more progress, since taking his first steps back in September. When he first started walking, I had to hang on to the back of his RGO*, in order to help support him, and now he is able to rely completely on his walker to balance himself. He has also been standing between couches and taking small steps, without wearing his RGO. We are so proud of our Liam!
*Reciprocating Gait Orthosis -- the leg brace he wears that helps support him as he walks.

Click here for video of Liam walking!

And a few pictures for our friends not on Facebook:

Working on standing & taking steps without his RGO

Standin' around...because I can!

Someone likes to wear underwear on his head...

 

Bittersweet

Where does one begin when they've neglected their blog for almost three months?

I guess I start here: I'm alive.

We've been back from our trip to the states for almost three months now, and I only just finished unpacking our suitcases a couple weeks ago. That should give you some indication of what my mood (and life) has been like since returning to Kuwait.

I'm only just now beginning to feel like my normal self again. I'd been feeling the way I used to feel after my husband would come home for a two-week vacation, and then leave for six months of work again. As time goes on, one gets used to being away from family and friends, but get a taste of what life is like having them around again -- drinks with girlfriends, dinner with family, movie dates with the husband -- and it's like starting the whole process all over. I had to keep reminding myself that I would eventually feel better. I'd eventually feel normal again. But things kept happening. Newtown happened. I could barely function after what happened there. And to make matters worse, I was feeling a ridiculous amount of guilt, because, unlike what every other Mom I knew/read about was saying -- I'm gonna hug my kids a little tighter -- I was so full of anxiety that my nerves were on edge, making me horribly crabby, so that every little thing Liam did made me want to scream. 

And, then, the day after Christmas, our housekeeper came to work in hysterics because her husband (who was back home in the Phillipines) was shot 12 times by a masked gunman on a motorcycle. They believe that the hit was meant for someone else, because her husband lived a quiet life, and didn't have any known enemies. Her pain was so raw, so visceral, that I could almost feel it. I did the only thing I knew how, in this particular situation, and gave her some money to send back home, to help pay for the burial. We had helped her a few months earlier with her adult son's burial, who had recently died in a car accident. It makes me sick to think about a woman losing her son and husband within six months of each other. I can't wrap my head around it. When things like this happen, I have a really difficult time dealing with the reason why life has to be so hard for some people. I have a hard time accepting why some people have to endure so much suffering. The only thing that seems to help is reminding myself (over and over again) that all I can do is try to live my life a little fuller. Because what is death for anyway, if it isn't to remind those of us here to live?

On a lighter note: my husband was reminded of the reason why my friends/co-workers nick-named me "frigid brigid" ("fridge" for short). I don't do emotions very well. My husband said to me a few days after: "I thought you were going to offer our condolences? Did you even give her a hug?" My response: "Yes, I gave her a hug. Okay, maybe I didn't give her a hug so much as I let her hug me, but still. I gave her money. Money is better than hugs anyway." I have issues.

Couple these events with my worsening anxiety, and I've been a ball of nerves. I've always had what I would consider "situational anxiety" -- anxiety thinking about a particular event (like my thesis, before I finished it, although I did just have a nightmare about it the other night) or going to a place I'd never been before or making phone calls or leaving the house -- ummm, ya know, normal people stuff. Lately, I can be sitting on the couch minding my own business and my heart suddenly starts racing and I have a hard time catching my breath. Or some days, like today, I wake up so full of anxiety that my hands actually feel weak (probably from clenching/tensing in my sleep), and my legs feel as if they'll buckle beneath me when I get out of bed. The other day my husband looked at my trembling hands and said, "Oh my god. You look like a junkie coming off of heroin." This sort of anxiety is totally new to me. I wonder at what point I take my doctor's advice and begin taking the anti-depressant he prescribed for me. I had a bad experience with them during college -- weight gain, sleepiness, etc. -- but he has assured me those were "old school" pills. For now, my anti-anxiety pill seems to do the trick, and I only have to take it when I need it. But the way my doctor explained it makes total sense: taking an anti-anxiety med without (or instead of) an anti-depressant, would be like continually putting out a fire, instead of dealing with what was causing that fire in the first place. I've been willing myself into feeling better, but no matter how positive I am, or how many freakin' self-help books I read, I can't seem to make my way completely out of the fog. 

So, for now, I do what I do best: I organize the heck out of everything. I'm naturally an organized person; or, maybe, I've simply become an organized person over the years, since it appears to be the only way to control the chaos that always seems to accompany my anxiety. Feel like your life is spinning wildly out of control? Begin obsessively organizing anything with labels -- canned goods work exceptionally well:

I can't tell you how much this soothes my soul. I begin organizing as if my life depended on it. My poor husband, though, has a hard time finding anything when I get like this, which I don't quite understand since I've explained my organizational system to him over and over again.

One more thing: because I feel particularly vulnerable when I write about this topic, I feel the need to express WHY I choose to write about it. Often, writing about one's own struggle with depression and anxiety can come off as highly self-indulgent (at least, I worry it may come off that way), especially when I feel guilty even dealing with these struggles, because I have so much to be thankful for, and everyday so many other families deal with heartache and loss and trauma. (If you want to understand the guilt, read this. I swear this woman lives inside my head. She writes about her struggles with an absurd hilarity that I can't compete with. And, if someone can say it better than you, let them). So, here is the reason I share this part of my life: I am a Monkee, friends. A disciple of Momastery. We believe in shameless truth-telling. We believe in basking in the light, instead of hiding in the darkness. We believe in living more authenticly, so that others (women, especially) will feel free enough to do so, as well. Okay, so I'm a little obsessed with the whole movement, but I've never before seen women come together like this. A group of women who lift each other up, instead of breaking each other down.

As I was finishing up this post earlier, Glennon (from Momastery) posted this quote:

And there you have it.

Okay, friends, I promise happier stuff tomorrow. I needed to get this out of my system.