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

Cups

Usually I sit down and do blog posts only when I have the time (which is obviously not all that often)... but this time I made the time, because I feel like I need to talk my way through what I've been feeling lately.

I always felt like I had a good strong hold on my situation when London was first diagnosed, and for the past 5 years- I knew when she was sick before she showed signs, I usually knew when to take her to the doctor and when to ride it out, I felt in control of her overall well-being. I handled things, I juggled things. Lately, though, I've felt like everything is completely up in the air. I feel like something terrible is spiraling toward me and I'm completely powerless to stop it- like being thrown a football and being totally unable to make the catch.

London has not been herself for several weeks now. She's been fussy, sleepy but restless, congested, and having trouble breathing... after treating a minor ear infection, she still wasn't perking up so I took her back to the pediatrician. He spoke to me at length about the high possibility of a sinus infection, prescribed a stronger antibiotic, then talked about other things that might be the cause of her symptoms- like enlarged adnoids. We discussed London's application for Make-A-Wish and why he hadn't sent it in after recieving it weeks prior. According to how things were worded on the application, he wasn't sure if she was 'sick' enough to qualify at that point. I didn't (don't!) ever want to look like someone who is just trying to exploit my daughter's disabilities to get free things, so I wasn't offended or upset over his hesitation. In fact, it was one of those things that I hoped he'd look at and, chuckling, tell me that she didn't qualify because she'd be with us forever. In the end, though, after more conversation, he signed off on it and it was faxed back to Make-A-Wish as I left his office. He also gave me a referral to see and ENT (ear, nose, throat) specialist. Before going home, I had to stop at the pharmacy to pick up her prescritption and after everything, and hearing that yes, her condition truly is progressive (meanign is worsens in severity over time), I was really feeling like I couldn't find good news anywhere at this point. It took every last ounce of control I had just to keep my emotions in check as I walked out to the car holding yet another medication.

And then it happened. About 30 minutes after leaving my doctor's office, my phone rang. I had the number saved in my phone so I knew exactly who was calling. It was Frank with Make-A-Wish. I assumed he was going to tell me that although the doctor signed off on things, they'd decided that London wouldn't qualify for a Wish, or at the very most he would let me know they'd received it and would look it over. I wasn't expecting to hear him say, "Danielle, we got London's application back from her doctor and we're all ready to go for her wish." After giving him some more information he needed, I loaded the kids in to the car, tossed that medication into the passenger seat, and then cried in the Target parking lot. In the midst of her being sick, and trying to figure out how to help her, along with juggling everything else that comes along with being a mother, that moment was like a small break in a dark cloudy sky... 

I have always been very realistic about London's future. From the day I found out I was pregnant with London, I knew two things: 1. it was a girl, and 2. something was wrong. Maybe I've touched on this in previous posts, I can't remember, so I apologize if I'm repeating myself... I never really voiced my concerns, because everything checked out beautifully at my prenatal appointments. So how crazy would I have sounded if I'd started spouting off about my 'feelings' when there were absolutely no red flags being raised during any test or uptrasound??? Anyway, I feel that because of this, I very easily accepted her diagnosis. I was never in denial. But I do feel like family and friends, as much as they love London and me and want to help, DO have a problem thinking realsitcally about things...

Let me quickly tell you a little thing about my sweet son- he's four years old now and I adore him! But he does this thing that drives me absolutely bonkers- he hands me things that he could just as easily or easier deal with himself... instead of just putting his cup down on the table, he wants to always hand it to me. Instead of just throwing away his candy wrapper, he hands it to me. He often gets frustrated when I refuse his offer. I'm constantly dealing with his freakin' cups!

SO, that being said, let me try to explain how I've been feeling in regards to being a person who is very realistic about London's future, but often feeling like I'm the only one in our support system who IS that way... I have a cup of fear, heartbreak, frustration, quesions, and mourning. It's full. But I can handle it. It's mine and I know how to deal with it without it spilling over. But I feel like everyone is handing me their own fetching cups!! I feel like I'm carrying the burden of everyone else's fear for London's future. I get it, it's not a fun subject of conversation- the fact that London might not be with us for a long lifetime. Trust me, if anyone wants her forever, it's me. She's mine. She's supposed to bury me, not the other way around. But while everyone else can hide behind the curtain of denial, whether conscious or otherwise, I'm the one dealing with the reality of her condition. And I'm seriously struggling with it. I feel like not only can I not catch that football of fear spiraling toward me, but that everyone around me doesn't even SEE the damn ball.

We've all pondered what we'd want when faced with the question: Would you want to know the exact date of your death or not? Well, I'm NOT saying that I want to know when London will pass away- I certainly don't want to put a LIMIT on her... but I want to be informed and educated on her prognosis and what to expect with her condition. But I feel like nobody wants to tell me anything. I feel alone. Carrying cups.

I recently attended the viewing of a boy who passed away way too soon. An amazing boy who was dealt more than his fair share of obstacles in life. I stood in that line, getting ever closer to his mother standing bravely by his casket, and the closer I got, the less I could breath. My chest tightened, my whole body started shaking... I thought I was going to have to make a hasty exit because I literally was barely holding myself together. I couldn't help but think about how on earth I would get through it if it was my child... I felt raw and unprepared for anything truly bad to happen. I hated the feeling...

I'm not trying to predict anything about London's future, I'm sure there are some of you out there thinking I'm morbid for even entertaing the idea of London's passing- but I've read and learned about her condition, I've paid attention to her every move, her every sniffle and cough, and I've listened to my gut feelings... I'm going off of the information I've gleaned over the past six years of London's life...

I'm a firm believer in things happening how the are supposed to happen... it seems like, for my family, some things fall together and other things fall apart in a way that gets us by every time. We might not see it right away, we might be angry or frustrated because things aren't working out the way we planned, but in the end, they DO work out... But why not prepare yourself anyway???

Am I the only one who feels like that??

What They Don't Tell You...

When you become a parent, there are so many things people will tell you- what brand of diapers is the best, who's the best pediatrician in town, why you should or shouldn't vaccinate, what the best car seat is, how to get them to sleep through the night after just a few days, how to potty train early, when to take them to the doctor and when not to, what detergent to wash their tiny clothes in... from family and friends to complete strangers, people everywhere will give you (sometimes unwarranted) advice about your new life as Mom.

I heard it all after I had London. Some was appreciated and some was not. Some was great advice and some was absolutely ludicrous. But NONE of it applied solely to my becoming a 'special needs mom' when London was diagnosed at about 3 months old. Suddenly nobody had any advice to give. Maybe they were scared to offend me at that point, maybe they understood that their little tidbits of good intention had no merit in my new world, or maybe they simply had nothing to say, but no matter the reason, I was no longer bombarded with "oh just FYI..." or "when my kids were babies..." or even "recent medical studies show that..."

I'll admit, it was kind of nice. I knew that I knew (know!) London better than anybody else in the world knows her. I carried her in my belly, I'm with her almost 24/7, I take her to all her appointments... So I never really felt like I needed much advice. But these last few months I have been thinking of all the things I wish I had known 5 years ago when our journey was just beginning. I wish I had had a little insight into what my life would be like today. The things people don't tell you when you become a special needs mom...

They don't tell you that after your child is diagnosed (or after you start seeing her seize, or notice that her development is lacking) that suddenly the only things that matter are the things that pertain to your child. Your favorite pastimes from before will no longer hold your interest. You'll scour the internet, the library, and your child's specialist's brains for information about what's going on. You might find helpful articles or studies, you might not. They just don't tell you that you'll become obsessed. Questions about your child's medications, therapy, insurance, diagnosis, and symptoms will keep you up at night.

But that's not the only thing that will keep you up. Every single noise, every single movement, every single delayed breath will have you running to the crib to check on them. I know this is true to an extent with any new parent, but when you have a medically fragile child the paranoia is multiplied by about a bazillion. You'll look like crap most days because your haven't slept, you either rarely remember to eat or you eat all the time because you're trying to please some part of your psyche that feels rejected and inadequate. You'll be scared to get in the shower because you're convinced that it will be in those two and a half minutes that your child will die alone, scared, and crying for you.


You'll sometimes feel homicidal... or suicidal. Most the time you'll feel nothing at all. You'll become numb to sleepless nights, the fact that the house is a total mess, and that you even once had a sex life. You're marriage might suffer. Your marriage very will might END because of the stress that will be put on it. In moments of clarity, you may look at it and say it's worth fighting for- even if fighting means leaving your child with a sitter and having a date night that you can't fully enjoy because you're too worried about your child and you are constantly checking your phone because now would be the time that your child dies, in the care of someone else, crying for you. After all, it didn't happen when you showered that morning...
In some cases, your marriage might become stronger. You might grow closer to spouse now that you've come to understand what's really important in life...

Sometimes you'll be able to get a lot accomplished in a day, and sometimes just getting through the day without crying is an accomplishment. When you're up to bat, and the bases are loaded, and you're doing what needs to be done for you child, you might find that emotions take a backseat so you can focus on what HAS to be done. But when you're home alone, and the house is quiet, you'll cry. Or maybe when you pass by that dance studio in your neighborhood and see a dozen girls in tutus practicing their arabesques you'll have to pull the car over because you just can't see through the tears.

You'll fantasize about what you thought your life was supposed to be... and then you'll look around at what your life is... There will be days when you feel cheated out of the dreams that so many other moms are living. Dreams that you really didn't know you had until they were gone. It's part of coming to learn what's really important in life. Having healthy, able-bodied children who can eventually become independent. Watching your child figure things out for themselves. Seeing them complete a new task without assistance. As difficult as it might be to the typical mom (and I know this, because I'm a 'typical' mom as well) for our kids to grow up and not need us, it's more difficult to know that they'll need us forever. Trust me on this. Then there's the whole issue of who's going to be there to care for your child if they outlive you. It's enough to cause a mental breakdown all on it's own... To have thoughts that it really might be best to outlive your child is something that only fellow special needs moms will understand.

You'll learn things that you really don't want to know. How to change feeding tubes... hell, how to even USE a feeding tube... How to administer injections... The names of so many medications you're halfway to becoming a freakin' pharmacist... Things to look for on an EEG... There will be countless things you'll learn throughout your new life that you'll never have even thought about before.  

You'll lose friends. Some because they are jerks. Some because they just don't know how to treat your and child and so they slowly slip out of your life... so slowly in fact, that you might not realize they're gone until years later. Some might come back, others will be gone for good. Sure, there's the occasional "Happy Birthday" over Facebook from those who used to call you all the time to go to dinners, movies, parties... but you really can't consider them your friends anymore because, let's face it, they no longer know anything about you.

If you're lucky, you'll find a whole new family of other special needs moms. This will most likely happen online, as the internet and social media will become one of your only connections to the world outside your bubble of insanity. These woman won't always know what you're going through, but they'll always be standing by with what is truly needed: not advice, but comfort. Of course, they'll help you navigate through your stormy waters, but more importantly they won't be afraid to just talk to you. They'll understand that you have a unique situation but they'll also still treat you like you are your own person. They'll know that, deep deep deep down, you still have ambitions, goals, passions, and feelings. They'll be some of the ones to see you through your darkest days. This family, as well as your blood family, will become the only group of people that you truly trust.

Some days, you will literally worry yourself sick. Your back is going to take a beating. You're probably going to put your physical health on the backburner because: 1) You can't afford to do anything about it when you are drowning under the medical debt of your child. 2) You really don't realize that anything is wrong until you, God willing, get a small break and take inventory of body. 3) Ain't nobody got time for that.

Things might get easier as your child grows. Then again, they might get a hell of a lot harder. Things will change- seizures will change, medications will change, therapies will change, doctors will change... and you'll feel like, with each change, that you're starting all over again. Back to square one. And it will be so hard.You'll feel frustrated all the time. You'll feel guilt (more on that in a different post)... You'll feel like an idiot sometimes because you might not be able to keep up with the flow of conversation in the ER when you take your child in for a reason you can't even define (as if being able to understand what is basically a foreign language is a realistic expectation... but you'll still feel that way)

Being a special needs mom is often the loneliest job in the whole world. You'll go for such long periods of time not speaking to an adult that when you do finally get some peer interaction, you're going to be socially awkward. You'll lost the capability to converse about anything other than your child. You'll listen to the conversation between what few friends you have left as you sit around the table at The Olive Garden and you'll think, 'this is the stuff that's important to you guys!?' You won't care who won the heart of The Bachelor or that coveted mirror ball trophy. You can't be bothered with Housewives, Honey Boo Boo, or any of the Kardashians. You might not know what's happening in other countries because you haven't picked up a newspaper or watched CNN for who knows how long. And all this, will make you a bit of a shut-in.

People will offer to help you, God bless them, and you'll kindly decline those offers 99% of the time. It's not because you won't need help, or want help, it's just because you won't be able to relax with someone else caring for your child. You'll have to teach them how to care for your child- how to feed them, how to hold them properly, what things not to do, and what to do in case of a seizure (because believe it or not, it WON'T always be call 911). But you'll appreciate the offer, nonetheless.

Even those friends who have stuck by you after it was all said and done will stop inviting you to hang out. It's not because they don't still love you, it's probably because you never come when they do invite you. It's just too much. We're expected to care for this child, keep up on housework, keep the fire going in the bedroom, in some cases care for our other kids, in some cases hold down a job outside of the home, juggle appointments, therapies, medication refills, AND socialize outside of the nurses and doctors we have come to know as friends????? That's a lot to ask. Try to do it. TRY. But don't feel ashamed if you can't.

Some days are harder than others, as with any parent. But most days are harder than that of the average mom. True, I didn't know all this stuff before London was diagnosed, but I also didn't have such an understanding of true love. So no matter the bad, scary, stressful things that come along with this new life, remember: there is good too.

A Little Heartbreak...

As always, it's been a while since I've been on here. And as always, I know I've been busy but I can't pinpoint with exactly what. It seems like I am constantly do things that need to be done, but at the end of the day, I feel like I've accomplished absolutely nothing.

For the past several months now I haven't felt like my normal 'self ' ... I've been overly tired, but unable to sleep. I've been moody, but with no apparent cause. I've had migraines, but never had them in my life before. I had been working out and making healthier food choices and I was feeling good but then all of the sudden I completely lost all motivation. All I want to do is sleep and eat. I find myself falling asleep if I sit down for even a minute or two. But even when I allow that to happen, or even when I get an adequate amount of sleep one night, I wake up feeling no more rested than before. I have just been in a slump.

So back in the end of May, I found out I was pregnant. I was really excited! I felt like I had a little pep in my step and I smiled every time I thought of sewing a new crib quilt, choosing a name, or digging out the kids' old baby clothes... I really was thrilled, regardless of how 'ready' we were or were not. I figure, there really IS no 'ready'. New babies come along, families and finances adjust and things work out just how they're supposed to. Regardless of the excitement I felt, there was a small voice in the back of my head saying it was too good to be true. I had taken a pregnancy test one morning and got that positive result then the next evening I got a negative. I figured it had to do with the time of day that I took those tests, because my body was SCREAMING that I was pregnant! I had all my normal signs- weird taste in my mouth, fatigue (although I was already experiencing this, as I said above), I could smell every spice in the cupboard... along with the more common things a woman feels during a pregnancy. Still, this voice nagged at me. I felt like it just wasn't real. Something wasn't right. And that voice was correct. Just three days after testing positive, I had a very early miscarriage. They call it a chemical pregnancy. As if it's just a fluke. Chemical pregnancy?? Like it's not even a valid concern or loss... My doctor told me that it happens with about 20% of conceptions- basically the egg is fertilized but never attaches to the wall of the uterus. She said that often times, it's the body's way of dealing with something that isn't going to 'work out'- like a chromosomal abnormality. Because it happens so early on, most women don't even know it happens. It's why many doctors discourage early testing- because I guess they assume what you don't know can't hurt you.

It does hurt. Even though there wasn't even a heartbeat yet, it hurts because of what it was supposed to be... it was supposed to be a brand new life. It was supposed to be one more little light in our world. It was supposed to be a surprise, because I was already pretty much decided on not finding out the sex of the baby. It was supposed to be my third baby.

I feel like I'm the only one hurting. Maybe because it was my body that did this. Maybe because I just think of it in a totally different way than anyone I told... I don't know. I feel like everyone had an attitude of 'oh well' while I was truly, genuinely sad about it.

But life moves on whether you're sad or happy.

I helped my sister with her wedding plans. I did my day-to-day stuff. We watched my husband's cousin graduate high school. We spent time as a family at the zoo...

On June 29th, my sister married a wonderful man in my parent's backyard. It was beautiful! We had all of my family together and we had extended family in from Colorado. It was a hot day, but a gorgeous day. After the festivities, as it got late, my husband decided to take London home while Kannon and I stayed to play and help clean up. He called me about 45 minutes later...

Our sweet Louis dog was dead.

He was tied up in the backyard and had knocked his water dish over and the heat was just too much. So we buried him in the backyard the next day and planted a tree there with him... We were all a little heartbroken. I broke the news to Kannon that very night, but I've since had to break it to him several more times, because he keeps asking where Louis is...

So I'm still not feeling like my normal 'self '... I lost what was supposed to be a brand new life... and we're one less pet in our family...

That's where we're at, I guess.