Days

The city I live in is celebrating its "days"...  there's a perfect view of the firework show from my front yard.  Right now I'm watching families gather at the park across the street,  neighbors enjoying the company of their friends with bbq and loud music, and the neighborhood out and about generally having a good time.

Typically we have a bbq with friends and family at our house and watch the fireworks afterward.  This year, I'm sitting in the driveway with just my two kids, throwing Snap-Its, and trying not to feel sorry for myself.  My own parents are away, my in-laws are unable to come up, my siblings either live far away or weren't invited because I've been to preoccupied with what's been going on with London to throw together a bbq, our friends are really Thomas's friends, and my husband is over seven thousand miles away.

I feel terribly alone.

I invited one if my best friends and her family over, then plans changed due to naughty kids and seizures. It seems like nothing is going my way, and I'm wallowing.

I feel like things are happening for everyone around me that I've been wishing would happen for us for some time now; and my optimism is steadily diminishing.

 Hopefully London will rest tonight and I'll feel renewed tomorrow...

Hospital Stay

Things have been crazy lately. We thought London got a sinus infection a few months ago, but after 30 days of antibiotics, things with her seizures just weren't going back to normal. She was prescribed clonazapam to give at night as a little extra boost of seizure meds as well as a bit of sedative to help her sleep.... it worked wonders for getting her through the night with no seizures, but during the day she was having a different kind than her normal and they were causing her to vomit almost each time she had one. After taking her off the med (since it was meant to be temporary anyway), seizure skyrocketed almost immediately.


This past Sunday they got so bad that I took her up to the ER in the morning. We decided to adjust one of her regular meds and we went home after about 5 hours of sitting there. Well, it was short-lived... I ended up taking her right back in that night around midnight.

The seizures were just coming one right after another. She happened to have one while they were getting her stats in the ER and immediately the nurse called "Red Patient" and rushed her back to a gurney. We rounded the corner, me pushing London in her over-sized stroller and the nurse carrying the machines she had just hooked her up to, and that was the first time I've ever seen so many doctors and nurses rushing toward London. They quickly transferred her to a gurney and began suctioning out her airway and placing an IV. I tried my best to stay out of their way and also be close enough that London could hear my voice telling her I was still there. I was thrown about a billion questions at once... what medications is she on? What doses is she getting? When did she last have them? How long has she been having seizures? Has she been sick? Do her seizures always look like that? Has she had any surgeries? How much does she weigh?


I tried just focusing on what needed to be done. London was breathing and her eyes were dilating, but she was unresponsive to all the pokes and commotion. They gave her a bunch a rescue medications, swabbed her sinuses, took chest x-rays, and then it became a waiting game.

They didn't know whether to take her to the ICU or the NTU (Neuroscience/Trauma Unit). The thought of ICU scared me. She's never had to spend time there. But we've spent enough time at the NTU that it didn't seem so intimidating anymore.

We ended up in the NTU around 5 hours after arriving in the ER. I was dead on my feet and thankful that I'd get a few hours of sleep. London was so pumped full of rescue meds that she wasn't seizing anymore.

Long story short, we ended up spending two nights there, counting the night in the ER. After an allergic reaction to a new medicine they wanted to try, we decided to put her back on the temporary one from before. Things were still going well after we got home on Tuesday, but I'm starting to think that's only because she had so much rescue meds running through her body still. I've noticed things starting to go back downhill. I'm trying a few things at home before I do anything else.

Things are a little more stressful with my husband working overseas for the next 4 months (we dropped him off at the airport the day before London went to the ER). Thankfully I have some pretty amazing friends and family that love and support us!

I'll try to update again soon...

Waiting for your piece of peace

I have been neglectful. I can only imagine that all nine of you out there who read this have been on pins and needles waiting for my next post. Sorry about that.
I've been meaning to post about London's Make-A-Wish experience, I've been meaning to post about guilt, love, real beauty, life lessons, the progress on our forever home dreams, superheroes, and the reasons behind my desire to own a strawberry farm, but apparently I can't sit down and put my thoughts to the keyboard lately. The husband recently volunteered to go to Afghanistan for his work. I've been meaning to talk about that and what it will mean to our family and our plans for a forever home. I think "I've been meaning" has become my most used phrase. And I hate it.

I hate "I've been meaning"...

London has been sick lately and is currently on her third round of antibiotics. Seizures are unpredictable, nights are sleepless, and frustrations are plentiful. I've been trying to work with Kannon on basic preschool lessons, he's had swimming lessons, I've wanted to get things done around the house, organize things for family photos, and sew an ever growing number of quilts... and in this mess that is my life at the moment, I sometimes sit down, stare into space, and just feel irritated.

I hate that I can't make London feel better.

So often, I can't see the beauty in every day, because I'm too frustrated to open my eyes to it.

I'm trying to change that mindset. I'm trying to love the little things and forget about the fact that I can't get Kannon to memorize his address or spell his last name. I'm trying to go easy on myself for not getting the kitchen floor mopped or the dog hair vacuumed off the couch and just live in the moments of taking the kids to the nature center or the dinosaur park. The dishes will still be there when I get back, after all.

Some days are harder than others, but I've learned that raising kids isn't about creating peace by being super-mom with her perfectly polished nails and delicious meals with veggies creatively sneaked in for the kids. It isn't about having a pristine house with windows so clean you'd swear there was no glass there at all or kids rooms so tidy that Martha Stewart herself could drop in unannounced and take photos for her magazine. It has nothing to do with all that crap you find on Pinterest about how to fill up the summer with educational, fun, and overall productive things for kids. No, raising kids isn't about creating that kind of peace.

It's about enjoying the peace that's already there-- unfiltered, raw, and natural. It's about being there in the ways that your child needs, and not in the way that those super-moms dictate to be the best. It's about getting joy from moments, not entire days.

Because let's face it, it's rare that an entire day with children will go exactly as planned, with no whining, fussing, fighting, dirty hand prints, snotty noses, skinned knees, wasted vegetables, poopy diapers, or spilled milk.

But what's guaranteed is something to appreciate in all that chaos.

 Little arms wrapped around your waist, leaving Cheetos fingerprints on your new jeans.

Tiny yawns.

Being told that you're the best mom in the whole world because you allow your kid to have a grape soda.

Watching Frozen for the hundredth time and hearing your preschooler sing the songs to his sister when he thinks you aren't watching.

Finding the other flip-flop.

When your kid dresses himself... is there anything more adorable than basketball shorts, cowboy boots, a long-sleeve tshirt, a winter vest, a tie, sunglasses, and a fedora???

Kids falling asleep on your lap.

Watching Jimmy Fallon clips with your kids because well, they have great taste in late night comedians.

Hearing all about our kids' dreams from the night before.

Hearing your daughter laugh in her sleep.

Bath bubble beards.

You don't have to wait for all the laundry to be done to find peace in your day. Really, when you sit back and just focus on what's in front of you, you can find the peace that comes for free with each tiny human. They all have some to offer- you just have to be open to receiving it, and you have to be willing to receive it even though it's covered in mud and boogers.

Sympathy vs. Empathy

So what is the difference between sympathy and empathy? Is there a difference?
We've probably all been shown both sentiments from others when we are going through a difficult situation, whether we've known the difference or not. Maybe we've all shown those same sentiments ourselves, to our own loved ones during their times of heartbreak...

Google defines SYMPATHY as follows:
1. feelings of pity and sorrow for someone else's misfortune
    the formal expression of pity or sorrow for someone else's misfortune; condolences
2. understanding between people; common feeling
   support in the form of shared feelings or opinions
    agreement with or approval of an opinion or aim; a favorable attitude
   relating harmoniously to something else; in keeping
    the state or fact of responding in a way similar or corresponding to an action elsewhere

Sounds like a pretty good trait to exhibit right? I mean, it all seems lovely, doesn't it?


Google defines EMPATHY as follows:
1. the ability to understand and share the feelings of another

Simple as that.


Really, those two terms seem to be interchangeable when you see them on paper. But in real life situations, I think there's a huge difference between showing sympathy for a person and having empathy for them. (Notice how I said 'showing sympathy' and 'having empathy'? Well, it's because I think sympathy is just that: a big show. But let's get back to those definitions for a second...)

Have you ever had one of those experiences when someone is telling you something or explaining a situation and you can totally tell they are lying because they are just over explaining things? Giving you way too many weightless details and giving the same information over and over using different words? We've all been there, right? That person was probably thinking they sounded really convincing, when in actuality, everything came out more like word vomit. I feel that way about the definition of sympathy. Too much, Google, too much.

On the other hand, think about the definition I got for empathy... Simple. Conclusive. Direct.

.........

If you haven't seen THIS VIDEO about the power of empathy, you've missed out.
She states that "empathy fuels connection, sympathy drives disconnection"
If you're driving down the road and you see a car wreck, and you gawk as you drive by hoping to catch a gory glimpse of carnage for your entertainment, there's no empathy for those people who might be injured. There's no connection there. If, however, you drive by and pray for the safety of those passengers, take a look in the rear view mirror at you kids and thank God for their safety because maybe you've been there, and then make sure you're being a cautious, courteous driver, you've made a connection with those people and what happened to them. No, you didn't have to stop and be the hero that pulls them from the wreckage to make that connection.

But empathy isn't about just seeing someone else's misfortune and learning from it or praying for them. It's about truly putting yourself in their position and sharing that heartache. In the video, she talks about the 4 qualities of empathy: perspective taking, staying out of judgement, recognizing emotions in others, and communicating. Empathy is not only feeling FOR people, it's feeling WITH people, like is explained in the video.

Perhaps my favorite part of that video is when she says, "rarely, if ever, does an empathic response begin with 'at least'" ... In my own situation, I hear this way too often.
"At least Kannon doesn't have it too"
"At least she doesn't have more problems"
"At least she's not in pain all the time"
"At least she can smile a little"
"At least you can make all her choices for her"
"At least she doesn't talk back like my daughter"
"At least you don't have to chase her all over the grocery store"

Another thing I come across all the time, especially over social media, is the one-upping. People try to top your story with their own, in turn, basically calling the attention back to them and leaving you feeling more alone and desperate than before they opened their mouth. No doubt those people want to help you feel better, but it just doesn't work like that. If I am feeling overwhelmed about London having two seizures one night, telling me about your child that has ten seizures per night doesn't help. Yes, there is a certain perspective that can come with me knowing about your child, but it doesn't negate my feelings.

When I had my (very early) miscarriage, I was speaking to a few family members about it and one of them said to me, "I hope it never happens to me" and with that, was pretty much done with the conversation. Was that empathy? No way! She pitied me. Obviously nobody wants heartbreak to come to them; we don't wish for our own misfortune. But to be so casual and flippant about a person's trials is not in any way empathetic.

Don't try to put a silver lining around people's heartache. Share your stories with them, yes. Let them know you have been there, but only if you HAVE been there!
Sharing similar experiences can be helpful, except when it comes from a selfish place. If you want the attention redirected onto you, that's a selfish place. If you are 'one-upping' that person with your more horrific story, that's a selfish place.

Empathy is a little more spiritual, in my opinion; more humble. I don't think empathy can exist without humility. I do believe that sympathy can motivate a lot of good deeds to be done... but the core of those deeds is probably a little on the selfish side; more arrogant... the deed-doer wants to make themselves feel good, and helping the less-fortunate just happens to be a side effect of that.

I could probably never explain things as well as the woman in the video does... but here's my take on it in a nutshell:

Sympathy is REJECTION of a person's situation. We see what they're going through, we can acknowledge it, we can feel sorry for them, but in the end, we let the thought leave our mind because such a sad thing could just never happen to us. We reject that scenario.
Empathy is REACTION to that situation. We see them suffering, we acknowledge it, we make a connection with it, and we share that heartache with them. We help carry the burden. We don't do it because we want to feel good about ourselves by being a hero; we do it only because we feel their emotions as our own.

The Incident

Back in December my family and I, along with my parents, my in-laws and my sister and her family were in Salt Lake for my son's dance recital. We decided to grab dinner across the street from the venue. Well, because the place was SO crowded, it took us forever to get, literally, just across the street. We should have just walked, but whatever. Parking was a joke, and both my husband and I were a little short tempered with each other, London needed to be changed and it had just been a long day. When we got inside (finally!) I went to the bathroom to change London's diaper... well, there was no changing table, and I was hardly able to get the wheelchair in there at all. I was so frustrated (really, the drive over there was ridiculous, we were all hungry, and like I said, tense words were spoken!) and I really started to feel like the whole world was out to get me. It seemed like the walls were just creeping closer and closer in a room that was already not made for London and I. So I went back out and, probably rather gruffly, told my husband that we should just go home. I'm sure at this point there were already tears in my eyes, the place was packed, I didn't want to go all the way out to the car to change London in the FREEZING cold (remember, no parking) only to come back in again, and I was probably dehydrated and low on blood sugar. Naturally my bad attitude resulted in some bad attitude given back to me from my husband and since Kannon was already eating (he had gone over with my parents) he challenged me... Which made me feel worse.

I was breaking down and I felt it, and I just wanted to get out of there.

Everyone started 'shh'ing me, and it just wasn't what I needed. I said some extremely bad words, right there at the door of the restaurant, and slammed it on my way out. I needed to go! I felt like I couldn't breathe, I was completely defeated for the day, and I wanted to cry myself to sleep. Thomas came out after me and there were a lot more tense words exchanged. I went back in to get the kids (I was freaking leaving!) and there was more 'shh'ing... my mom and mother-in-law were trying to calm me down and it just wasn't working, Thomas was pretty upset with me (I'm sure he was embarrassed to be with the crazy woman) and I felt like nobody would just let me go.

My mom and mother-in-law got London into the bathroom and, between the two of them, changed London's diaper on the 12 square inches of counter space by the sink. In the meantime, of course, other people are coming in and out of the two-stall bathroom probably thinking to themselves that the woman crying is completely off her rocker and should be institutionalized. So I'm standing in this tiny bathroom, crying, muttering to myself that I just want to go home and have my nervous breakdown, while my mom and MIL are trying to get London taken care of, and there are a few kids coming out of the stalls who will be needing the sink that is not really accessible because of our freak show, and I just want to disappear into a black hole. My mom and MIL are still 'shh'ing me and telling me that everything is ok and all I can do is cry and list the reasons that things aren't ok... like the fact that there's no changing table, or that the bathroom isn't handicap accessible, and that everything is so difficult. Well, those kids who were so kindly (probably out of terror!) waiting for the sink? Their mom was holding the door open (which was behind me) and as I went to leave after London was tucked back into her wheelchair, she said to me, "No, it isn't fair"

And finally someone was just listening.

Instead of trying to fix it, or tell me to calm down, someone just validated my feelings.
(But thank goodness for my mom and MIL doing what they did, too!)

So after all that, we're standing back near the door to the restaurant, sort of blocking the aisle to the tables while I got things shoved back into London's backpack and I hear a woman behind us saying some stuff about blocking the way and standing right in the middle of everything...

It was obvious that she was talking about us. And it was obvious that she didn't care is she was overheard. I bit the insides of my cheeks to keep from totally just flying off the handle on her, when, bless his heart, my father-in-law looked at her and said, "well excuse the shit out of us!" And then all the sudden Big Mouth was changing her tune, feigning confused innocence, and claiming she was talking to her son. Yes, Big Mouth, maybe you were talking to your son, but you were very clearly talking ABOUT me and my handicapped daughter standing between you and your onion rings.

Finally we left. I cried pretty much the entire way home. I hated the situation and I hated myself for letting it get to me. I'm sure I made a scene and embarrassed everyone.

To the woman who agreed that things weren't really fair for moms like me, thank you. You honestly have no idea how much I needed to hear that.

To Big Mouth, you should be ashamed of yourself. I'd be humiliated if my children or spouse said the things you said considering the situation that was painfully obvious right there in front of you. I hope I can teach my kids more tolerance, patience, and empathy than you displayed that night.

Looking back, I'm just grateful that I had my mom and MIL there to take care of things when I obviously couldn't. And I'm glad that my FIL had the guts I didn't have to call Big Mouth out on her comments.
(Apparently Big Mouth went back to her table and told her husband what happened and he asked if she'd like him to go 'kick his ass'... LOL)

So anyway, it was something that happened.

I Look UP to Single Women With No Kids, and I'm Not Sorry

You've all seen that crazy blog, right? The one written by Amy Glass, who looks down on women who marry and pop out kids, then choose to raise their kids and not go out into the 'real' workforce... She says that women like me (and so many others) are not "on equal footing with a woman who works and takes care of herself". We're simply women who chose the easy path, the common path... that we're average and asks the question, "Why on earth are we settling for average?"

Simply put, like her title says, she looks down on me and those like me.

I'm sure there are more responses to this blog post than I'll ever read, but here's my take on it...

Yes, anyone can get married (assuming we're not going to branch off onto the gay rights issues). We can have children (let's not get into fertility issues either). We can (if we choose to and can make it work) be stay-at-home moms. We can do this before or after we backpack our way through Asia, get a promotion, or land our dream job. We can go to college or not go to college.

She says that "The dominate cultural voice will tell you these are things you can do with a husband and kids, but as I've written before, that's a lie. It’s just not reality."
I say it's not impossible, but yes, definitely more difficult. So does this woman have a problem with the fact that we choose this life at all, or is it all about our timing?

Personally, I wish I had gone out and experienced things before I got married that are much more difficult to do now that I am married. I should have traveled. I should have gone to college. I should have met people and saw things and gone on adventures. I look up to the women who go out and do those things! But I didn't. This is not to say I'd trade my life for another, it's just that I would have done a few more things before I started the life I'm living now. I stayed inside my box, and, according to that woman, I chose the "path of least resistance". Why then, do I feel like my path is full of potholes, obstacles and stormy weather??? I'll tell you why- it's women like her. Moms like me constantly have to battle the judgement that comes when we say we're stay-at-home moms. That's a good chunk of resistance on top of all the other stuff involved in running a household. I'm not going to get into the fact that moms of children with special needs have some extra stress in their lives.

Running a household... This woman apparently hears all about how hard it is to raise kids and run a household, but obviously never from a man because, according to her, "Men don’t care to “manage a household.” They aren’t conditioned to think stupid things like that are “important.”" WOW! In my opinion, a good man, KNOWS the importance of running a household and raising kids. I shudder to imagine the kinds of people she associates with. Who runs her household? 

Who raised her? Her mother? A nanny? A foster parent?? Does she have no respect for the people who raised her with the values that she has, to go out and get a good job and experience everything the world has to offer? Or maybe she had a very difficult childhood and those who raised her don't deserve that respect....

I like to imagine she just twinkled down from a cloud of superiority one bright and sunny day.

She states that "Women will be equal with men when we stop demanding that it be considered equally important to do housework and real work. They are not equal. Doing laundry will never be as important as being a doctor or an engineer or building a business. This word play is holding us back" 
I agree a bit here... the clothes that I clean every day are not nearly as important as the lives that a neurosurgeon saves every day. But guess what- that kid I'm washing clothes for, he might one day be in the operating room saving lives. I bet the majority of people this woman considers to be 'important' and 'successful' owe a lot of thanks to their moms. And I bet they're not sorry for it. 

In case you're wondering, Amy Glass, I do hope I can raise my kids to go out and achieve greatness. I want to push the importance of a college education and seeing the world. I also want to push the importance of family and raising children. I want my kids to be open to new things, to think outside of the box, and to have a strong moral foundation. But you probably don't care because I'm just a lowly housewife who has no right to address you.

Let me reiterate: I don't regret having my children or making the choice to stay at home and raise them. I do think it would have been an amazing thing to look back on my life, however, and see accomplishments like going to college or traveling to foreign lands. 

Where would we be without mothers? Where would we be without women who are willing to sacrifice their bodies, their time, their personal space, their money, and, so often, their very DREAMS, all in the name of LoVe??? 

I'm not saying moms who choose to work or have to work to make ends meet are not those kinds of givers. I think moms who work outside the home are incredible! A single mom who works outside the home?? She's Supermom.

I'm also not saying that women who choose to never have children are selfish. They might spend their spare time volunteering or mentoring. Maybe they rescue homeless kittens on the weekends. I'm sure there are plenty of them out there who are selfless beyond belief. 

I think as moms, as women, we simply do the best we can no matter our situation. We do what we feel is right. What's best for one woman isn't ideal for the next. Nobody handles the exact same situation in the exact same manner- because get this: we're all DIFFERENT! Instead of ridiculing our peers for their personal choices, let's celebrate them! Let's lift each other up!

Have you ever heard the quote:

 

Promote it Amy, but don't bash those of us who are on the other side of things. We're doing important work too. I don't know what you do for a living (I'm guessing you're a doctor or an engineer or a business owner), but guess what I do...

I'm above and beyond just average... 

I shape a small part of the future.

 Top that.

Lately...

I think about this blog often. I wish I posted as much as I thought about it.

To catch up- London went in for a sleep study to check for apnea and other things. I was SURE that it would show us something. Something that we could treat. The study was hard on her... trying to sleep in an unfamiliar environment while hooked up to to about a billion wires and machines along with having a cannula in her nose just isn't her thing. But we got through it and I guess she slept enough that night for them to get the information they needed. I waited patiently for the results... And when I read the letter from the doctor, I was completely disheartened.

The test was basically normal. Her blood is oxygenating normally, she doesn't have any sort of significant apnea, and she's reaching REM cycles fine. The only thing that was noted that I could check into was an elevated amount of leg movement (restless leg syndrome) that could be due to low iron levels. What?? That's it? I felt like an idiot. I was sure that since she was waking up so often through the nights and sounding to congested that there would be talk of something that we could do for her.

But on the other hand, I sort of knew deep down that all of this was simply a matter of her condition. Her extremely low muscle tone makes it difficult for her to do many things- hold her own head up, clear her throat, eat orally, clear her esophagus completely when she swallows... and now, apparently, breathe normally. It's not that she can't breathe, she's getting plenty of oxygen to her blood, and we're not at a point where we need to be too alarmed. I should be grateful. But I wanted something fixable.

 Her breathing is better than it had been, but she still often sounds extremely stuffy and congested. It's likely that this will always be the norm.

I had a good long talk with her neurologist and gastroenterologist about her condition and the struggles she is having lately and about what to possibly expect for her future... it was the hardest, most real, conversation we've had, but I left feeling better about the certain decisions my husband and I had made about London's future, and I felt that I had complete support from her doctors. They were both very understanding (they both know firsthand many of the things I'm going through as a special needs mom), and they took time to explain things to me and answer all my questions. They were behind me 100%, and it gave me a little bit of confidence that was missing. I really needed that!

Our future, London's future, isn't certain. Nobody can tell me what exactly to expect, because they just don't know. But having an open dialogue with her doctors and our family has been really good for me. My stress level was through the roof because I was holding so much inside... I felt like coming out and saying it would make it real. Well, guess what- it was already real... now I feel like I can at least prepare for whatever her future might be.

I have also been mentally preparing myself for London's Wish. Holy cow, what an experience that is going to be! We got to take London to the Wishing Room where she declared her Wish (to go to DisneyWorld and to swim with dolphins) and after getting approval to travel from London's doctor, we're all set to go! The travel coordinator has been in contact with me about travel dates and it's looking like in March we'll be headed to sunny Florida!

I'm so nervous I could barf.

I'm scared that I didn't make the right choice for her wish. I'm nervous about traveling with her. I'm worried that there won't be rides she can go on (even though I've been reassured countless times by those who have gone before us that there will be plenty for her to participate in)... I'm trying so hard to just sit back, relax, and enjoy this amazing gift that has been given to her and to our family, but I won't lie- it's difficult to keep the anxiety at bay about it all. What if she hates the plane? What if the weather doesn't agree with her seizures? What if she gets sick while we're there? What if, what it, what it????

(If you haven't noticed by now, I'm THE BIGGEST worrier in the world!)

But overall, things are good. We're lucky! We're blessed! We had a good holiday season (even though we all go the flu, then when things were looking better, I got hit with it again HARD. I swear I've been sick for months!) and I'm glad to see the start of a new year.

2014 is going to be an adventure! I've made a lot of goals for this year and I'm looking forward to making them a reality.

Thanks for reading! More SOON!! (if I post that, maybe I'll make it happen... I've got so much I'd love to write about!)

D