Thursday, March 12, 2015

I Wanna Hold Your Hand

Yesterday as we were walking home from a little shopping trip to Wal-Mart, Liam asked me if he could hold my hand. This is the first time he's ever asked that outside of our house (we sometimes dance around inside and I hold his hand in order to twirl him in his chair).

So as he wheeled with one hand and held mine with the other, I smiled and said "Look at you holding Mommy's hand." And without skipping a beat he said, "Just like other kids."

Just like other kids. 

Two things struck me in that moment:

1. He is beginning to realize that there are things that "other" kids can do. Of course, this isn't the first time it's happened. After coming home from his cousin's basketball game recently he asked, "But why couldn't I play?" And because I didn't have a better answer than "because you have Spina Bifida," I jumped online and found a wheelchair basketball team in St. Louis. And, now, whenever the subject of basketball comes up, Liam quickly says "I can join the team as soon as I turn six."

2. It really is the little things that matter. At five years old, being able to hold your Mommy's hand on the way home from Wal-Mart is everything.

Friday, February 28, 2014

On Gratitude and Special Needs: Our Trip to the River Jordan

Well, friends, as I'm sure you could tell from my facebook posts, we had a wonderful time on our trip to Jordan last month. One of the highlights of our trip was a visit to the River Jordan, where we had a once in a lifetime chance to go down to the very spot where it is believed that Jesus was baptized by John the Baptist. It is a moment that will stay with me for the rest of my life.

Excavated remains of Bethabara
The River Jordan no longer flows through this area (it's a little farther out now), but the earth and stones that Liam and I are touching (in the VIDEO below) are the excavated remains of Bethabara -- and the very spot where it is believed that Jesus disrobed and prayed before being baptized by John the Baptist. Our wonderful tour guide, and two others we had to check with to make sure they wouldn't object, insisted I bring Liam down there: "It is very important. It is very lucky. Only the Pope goes there."

Click HERE for Video if you're on a mobile device.

If I look petrified in the video, it's because I've already had to climb under a set of ropes (the entire section is roped off from visitors) and all I can think about is a heavily armed man running up and yelling at me, since the site is located in a military zone. Also, as my husband often reminds me, I am not a person who likes to break the rules.

As we began to make our way back to the bus, my husband said to me, "Did you say a little prayer?" And because I didn't want to admit that the only prayer I said was, "Please, God, don't let me get in trouble for being down here," I said "yes" and continued walking. 

"I feel like I could cry," I said to him a few moments later. And it was then that I realized there was only one prayer to say: thank you.

It never occurred to me in that moment to ask God to 'fix' Liam. It didn't occur to me to pray to Jesus and ask him to help Liam walk.

It never occurred to me to ask for anything. I only felt an overwhelming sense of gratitude.

When we started on this journey almost five years ago, I never dreamed I'd be at this place. I spent the last four months of my pregnancy focusing on the things my little boy would never do. I spent those months wishing away his Spina Bifida. Five years ago I would've been our tour guide. I would've seen a little boy in a wheelchair and thought, this child could use a miracle.

But now I know the truth: we don't need any miracles.

Because we already have one.

"So much has been given to me. I have no time to ponder that which has been denied."
- Helen Keller

More pictures from our trip...

On our way to the River Jordan!

Click HERE for video if you're on a mobile device: "We're going to the River Jordan!"

Enjoying his treats from friends we met along the way. Liam came home from the River Jordan with a Jesus necklace, a rosary, and delicious marshmallow cookies.

Mommy & Liam at the Dead Sea

Floating in the Dead Sea!
Click HERE for video if you're on a mobile device: Liam Floating in the Dead Sea!

On the drive to Petra
Hiking in the Middle East

Family Picture at Petra

Our little world traveler on the flight back to Kuwait 

Friday, November 15, 2013

We Don't Need No Stinkin' Surgery!

Well, friends, we had a very productive month-long stay back home in the States. We've been back in Kuwait now for about a month, and I've been majorly slacking when it comes to the blog -- mostly because I've been binging on the new seasons of Sons of Anarchy and Teen Mom 3 and Dancing With the Stars and The X Factor. What can I say?! I missed A LOT of my shows when I was home. 

So we had two major things to check off our to-do list while we were home: get all of Liam's doctor appointments taken care of AND figure out exactly where we want to buy/build our first home. I am happy to say we were able to check off both items. We got all of Liam's appointments taken care of, which, trust me, is no easy feat since it typically involves five hour drives and some very long days at the doctors office. Luckily, Liam and I are pros when it comes to spending entire days at the SB clinic -- we've been doing it since he was three weeks old after all. Liam's Daddy??? Not so much. Luckily he has the incredible ability to take cat naps just about anywhere...even in the doctors office. :)

We also figured out exactly where we're going to build a house. That's right... we just signed the papers to begin building our very first home! Construction will begin in just a few short weeks, and we'll be moving back to Illinois this April! Well, Liam and I will move back in April, and my husband will follow about nine months later, once his contract in Kuwait is done. The house will be equipped with everything Liam needs -- wide doorways, roll under sinks, a roll in shower, etc. Can you imagine what sort of independence that offers?! It makes my heart so happy to know that he'll have absolutely everything he needs. 

We pretty much knew which subdivision/school district we wanted to build in before we even went back to the States, but we wanted to make sure we ruled out all the other options. So we hired a realtor and spent a couple days looking at some already existing homes just to see if it made sense to buy a house and then spend the time and money modifying it to suit Liam's needs. We also checked out a lot of the other subdivisions in the area. In the end, we decided to build a brand new home in the subdivision we had originally planned on, but I'm still glad we spent the time exploring all our options. I'm hoping it will cut down on the "buyer's remorse" that I so often hear homeowners talk about.

But enough about that. I'll share more details about the house later. Now for the really good stuff: we received some very exciting news from Liam's doctors. 

You might remember -- if not you can read about it here -- I mentioned that part of the reason we planned on moving home this spring was to take care of the couple of surgeries Liam would need before he started preschool in the fall. Well, guess what?! He don't need no stinkin' surgery! That's right! How does that happen you ask?! Magical Mommy physical therapy -- at least that's what the orthopedic surgeon tells me.

Trust me -- no one is more shocked than I am. I went into that appointment feeling extremely anxious because I was convinced Liam's orthopedic surgeon was going to tell me I ruined his life because I took him out of physical therapy in order to move him to Kuwait (even though these were decisions that were thoughtfully made and previously discussed with Liam's doctors and therapists). But sometimes I am a crazy person, so the little voice in my head had convinced me that I had permanently screwed up my child's life. Not only did Liam's orthopedic surgeon NOT accuse me of ruining his life, but she actually said we get the credit for Liam not needing another foot surgery. I guess the fact that I've had so much time to work with him since moving to Kuwait made all the difference.

We'd been planning on another foot surgery on his more problematic foot for years now, and never in my wildest dreams did I think his foot could actually be corrected with physical therapy alone -- that's how much tighter and more constricted it was than his other foot. Apparently, since Liam learned how to stand up to the furniture earlier this year, he has been stretching out his feet little by little. Every time he stands up and puts weight on his feet, they get stretched a little bit more. Voila! Now, there is only a five degree difference between his "good" foot and his "bad" foot. Incredible. 

Check out those perfect feet!

His doctor also couldn't get over the fact that his adductor muscles (the muscles in his groin/inner thigh area) weren't nearly as tight as they had been when she last saw him. Without even realizing it, Liam had been stretching those muscles out. A few months ago, he learned how to get on and off his Plasmacar, and climb up his slide and get himself into a seated position -- both of which require him to lift each of his legs up and over, stretching out his adductor muscle in the process.

They also couldn't get over how much stronger his quads are now than they were when we did his last muscle test. I have decided all of this means I can legitimately include "physical therapist" on my resume now. I have been trained by the best, after all. :) 

We received more good news from Liam's urologist as well. Liam's kidneys look great, his bladder looks great, and not even a single infection! Everything looks great! So great, in fact, that the surgery we discussed during his appointment last year is no longer necessary (at least not at this point). His urologist thinks all we need to do for now is "watch" him. I mean, we'll still continue to catheterize every three hours, but he doesn't need any surgical intervention as of now. She doesn't even think it's necessary to continue doing his yearly urodynamics testing (CMG) -- that's how great everything looks! We'll still continue to monitor his kidneys and bladder with ultrasounds every six months, but no more hour-long urodynamics testing!

His urologist also said we could start getting him comfortable with the toilet, so that we can eventually figure out how much control he has. And as you can see, Liam is very excited about his new bubble guppies potty seat:

I will update you more on Liam's other progress later. He has a new RGO walking brace that we're working with -- he outgrew his other one -- and the child moves so fast I can barely keep up with him! And he is also loving the freedom and independence his new wheelchair brings.

So much to be thankful for. Life is good.

Sunday, September 8, 2013

Ten Things of Thankful: Sweet Home Chicago

Ten Things of Thankful

You guys! We're home. We are finally home! No, we haven't moved back from Kuwait for good yet (I know some of you have been asking), but we will be here in the states for a month-long trip, in order to get Liam's doctor appointments taken care of, and we're also looking to buy, maybe even start building a house, so that we're all set when we move back in April.

We spent our first weekend in downtown Chicago with my family. It's funny how I lived in Chicago for the first eighteen years of my life, and yet I've barely experienced what this city has to offer. So we stayed at a beautiful downtown hotel, and explored this amazing city.

So many things to be thankful for this week, that it's hard to narrow it down to just ten. But I'll try my best.

1. I'm thankful for planes that land safely.

2. I'm thankful for a three-year-old, who not only behaves himself on very long flights, but actually LOVES to fly. Like, when we're landing people always turn and look at him with a smile, because he always laughs and says "WEEEEEEEEEE!!!!!!!" as the plane is descending and landing. Although, depending on the pilot, he can also sometimes be heard saying "Oh, what was that?!" or "That was a little scary." Those comments get little smirks as well.

3. I'm thankful for in-flight entertainment in the form of drunk adults. This woman got up multiple times as we were landing, even after all of the flight attendants were seated and buckled in, and even had to be told via intercom to sit down. And during the flight she got hushed no less than ten times by others on the plane. Total Kristen Wiig Bridesmaids style.

4. I'm thankful that my husband gets along so incredibly well with my family. Take this picture, for instance. Just two brothers hanging out in the hotel hallway with absurdly large beers, purchased on a layover in Germany hours earlier. Don't mind our crazy niece hovering above.

5. I'm thankful that I get to see what amazing human beings my nieces and nephews are growing up to be.

6. I'm thankful for Chicago deep dish pizza.

7. I'm thankful for U.S. Dollars. It is so, so nice not having to do quick conversions in my head every time I make a purchase.

8. I'm thankful for large suitcases. Wanna know what packing for a month-long trip looks like? This. Although, truth be told, this is also what a weekend trip to Dubai looks like. I can't help myself.

9. I'm thankful for hotel sleepovers.

10. I'm thankful for cousins who absolutely love and adore Liam. I mean, you can actually SEE the love in this picture. Melts my heart.

Ten Things of Thankful Hosts:
A Fly on our (Chicken Coop) Wall, Considerings, Finding Ninee, I Can Say Mama, I Want Backsies, Steps into Parenthood, Thankful Me, The Wakefield Doctrine


$75 Cash Giveaway to Celebrate The Pink Roller Coaster's One Year Blogiversary!

This giveaway will end at midnight on Saturday, September 28.
Winner MUST have a PayPal Account. You must be at least 18 year old to enter.
Giveaway is worldwide. Void where prohibited by law.

a Rafflecopter giveaway  
This giveaway is open worldwide. Void where prohibited by law. You must be at least 18 years old to enter. Winner MUST have a PayPal account. Winner will be chosen at random by and will be notified via email.  Winner shall respond within 48 hours or a new winner will be chosen. Facebook, Twitter, Google+, Bloglovin, Pinterest, and Blogger are in no way associated with this giveaway. I do not share or sell any information you provide.

Sunday, September 1, 2013

Ten Things of Thankful

“If the only prayer you ever say in your entire life is 'thank you', it will be enough.”
                                                                                                                   -Meister Eckhart

Ten Things of Thankful

1. I'm thankful that our mail no longer consists of piles upon piles of medical bills, only lots of credit card offers.

2. I'm thankful that because Liam's medical bills are finally paid off, and because we've saved money by living in Kuwait for the past year, we're now in the position to buy, possibly build, our first home.

3. I'm thankful that someone from the Spina Bifida Association contacted me a couple days ago, asking if they could feature Liam's SB Story in their October fundraising appeal. I said yes, of course, even if my husband does occasionally call me a "stage mom," and jokingly refers to me as "Kris Jenner." But it's like I tell him: whatever we can do to raise SB awareness (and funds) is fine by me. If it's wrong, I don't wanna be right.

4. I'm thankful that Liam no longer needs my help getting on and off his Plasmacar. I'm thankful that he's learned how to climb onto his slide AND turn his body around so that he can slide down on his butt, instead of just his stomach. These little bits of independence make my heart swell.

5. I'm thankful that I have a mom who loves me so much that she called me last week and actually said this: "I need you to buy a box of dark hair dye and a head covering just in case DeMarko has to get you out of the country quickly. He and Liam can blend in, you cannot."

6. I'm thankful that Liam has started talking -- really, started talking. I am aware that not all parents get to experience this joy, and I feel grateful for it every day.

7. I'm thankful that my husband passed another one of his computer certification exams last week. I'm thankful that he's working hard to enhance his resumé, in preparation for our move back to the states (and trying to find a new job) next year.

8. I'm thankful that despite being born with Spina Bifida and Hydrocephalus, Liam is as healthy as a horse. This isn't always the case, and I am fully aware of what a real blessing it is. 

9. I'm thankful that we'll be heading back to the states in less than a week. I'm thankful for upcoming date nights with my husband, lots of time with family, and a much-needed girls' night out.

10. I'm thankful that readership of my blog is growing, as my husband says, exponentially. I'm thankful that people actually care about what I have to say, and that so many of my friends and family, along with some new bloggy friends, have been so supportive. In fact, I'm so grateful that I am running a $75 Cash Giveaway, as a way to say thank you to my readers AND celebrate my one year blogiversary. Can you believe September 28th marks one year since I started blogging?! And, okay, so maybe another reason I'm doing a giveaway is to increase traffic to the blog and gain some new followers -- but a girl's gotta do what a girl's gotta do, am I right?! You can enter the giveaway in the Rafflecopter below.

Ten Things of Thankful Hosts:
A Fly on Our (Chicken Coop) Wall, Considerings, Finding Ninee, I Can Say Mama, I Want Backsies, Steps into Parenthood, Thankful Me, The Wakefield Doctrine 

$75 Cash Giveaway to Celebrate The Pink Roller Coaster's One Year Blogiversary!

This giveaway will end at midnight on Saturday, September 28, 2013.
Winner MUST have a PayPal Account. You must be at least 18 years old to enter.
Giveaway is worldwide. Void where prohibited by law.

a Rafflecopter giveaway
This giveaway is open worldwide. Void where prohibited by law. You must be at least 18 years old to enter. Winner MUST have a PayPal account. Winner will be chosen at random by and will be notified via email.  Winner shall respond within 48 hours or a new winner will be chosen. Facebook, Twitter, Google+, Bloglovin, Pinterest, and Blogger are in no way associated with this giveaway. I do not share or sell any information you provide.

Tuesday, August 20, 2013

"I Can't Do It": K(no)wing Your Child's Limits

After almost four years on this SB journey, Liam finally uttered the words I've been dreading: "I can't do it." It stopped me dead in my tracks. I immediately responded to his frustration -- we had been working (again!) on trying to get him to pull his walker forward, after taking steps without wearing his RGO walking brace -- with the old cliché about trying again (if at first you don't succeed), and then I very enthusiastically said something about how "we don't say can't in this house!"

But if I'm being totally honest, his words rattled me. Shook me to my core. I sat back and wondered if maybe he was right. Maybe he couldn't do it. Maybe he couldn't move his walker forward, while simultaneously using it for support. Maybe his walker would only ever be used as a support for standing. Maybe this was as far as he was going to get in the walking process. Maybe this was as much as his body would allow. And for a little while I was devastated.

But then, eventually, I got to thinking about how long it took to get him this far. I thought about how I strapped him into his RGO walking brace, and walked him around our house every freakin' day, for over a year before he would finally take steps on his own. I thought back to when I was trying to teach him how to crawl, and I would follow behind him, moving one arm, one leg, one arm, one leg, for what seemed like forever. I remembered how everything Liam has accomplished, every milestone he's reached, he's done in his own time, not mine. 

So, for now, I say NO. No, we will not stop trying. No, this isn't as far as he goes. We will try, and then we will try again. 

Friday, August 16, 2013

Love: Then and Now

All week long I've been trying to think of things that I used to love. I'm drawing a blank. 

Okay, so I'm not drawing a total blank. Maybe oreos and Subway cookies and large pizzas all to myself keep coming to mind. But I can't possibly write about how much I used to love food. I can't. I won't! I'm going to save the last shred of dignity I have left, and not talk in depth about how much I used to love moonpies.

But since I can't quite remember anything substantial that I used to love, here are some things that I love right now:

I love that at least once a day, Liam leans into me and says, "I love you, Mommy. You're my best friend."

I love that as soon as he hears his Daddy's car in the parking lot, Liam starts crawling for the front door, yelling "Daaaaddddyyyy!" 

I love watching Liam crawl up to the couch, pull himself to stand, and then take a couple of small steps towards the couch -- something he couldn't do six months ago.

I love Liam's misuse of pronouns. I love that when he wants to be held, he puts his arms out and says "hold you again." And when he wants to play, he says "come play with you." I haven't yet figured out if this is just bad grammar or a very effective manipulation technique, but either way it works. 

I love that every night when we climb into bed to read a bedtime story, Liam says "I'd really like to cuddle, please."

I love that in the middle of the night, he'll sometimes wake up and say "no take nap." Okay, so when I'm exhausted or trying to get stuff done, I don't exactly love this little habit of his, but sometimes it is surprisingly adorable.

I love the way Liam says "awww, he is so cute," anytime he sees an animal on t.v.

I love watching him do push-ups with his Daddy. 

I love when Liam does something funny, and, out of the corner of my eye, I can see his Daddy crack a smile.

I love my perfect, little family.

I'm sure I used to love a lot of things. Before Liam. Before my husband. But I can't seem to remember any of them.

This has been a Finish The Sentence Friday post. Today's sentence is: I used to love... 

Linking up with these fine ladies:
Janine: Janine’s Confessions of a Mommyaholic
Kate: Can I Get Another Bottle of Whine?
Stephanie: Mommy, for Real
Kristi: Finding Ninee

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