Not Today, But When?

We have worked really hard since she was born to give Emmeline her best shot at life.  At first that meant helping her eat and breath.  That turned into multiple surgeries, doctor appointments and more therapy than I can count.  We have probably spent weeks, if not months in driving time getting her to the best specialists we could find, and she has excelled.  She is doing phenomenal in school, therapy, Girl Scouts and even does part of our family runs with us.  It's more than any doctor thought possible.

But I worry.

She blends pretty well at school.  She doesn't really notice the differences yet in herself and her peers.  They help her feel included and demands aren't super high. They're 8. They wait for her in line, hold her hand to help her down the hill to the playground, run a little slower during tag so she can catch them, pick her to sit with them at lunch etc. In short, most of them are kind. 

But when will that change?  I live in constant fear of that day.  When Emmeline will be left out, and notice.  When kids will get tired of doing everything slower to include her. When will she notice they are doing everything slower and resent it?  She desperately wants to play soccer, but I can't handle seeing her realize she can't keep up, or finally getting the ball only to have it stolen while she plans the motor skill to actually kick it. My heart aches at the idea of having her be so excited to play only to be left in the dust. I thought "maybe we could find a Special Olympics soccer club or something". But she wants to do the rec league with her friends and she would know.  That's the thing.  She's physically limited but crazy observant and smart. You can't get anything over on that girl.  She would know.

I wish there was more I could do/have done to help her. The reality bomb is, that there are going to be things my daughter can't do.  That no matter what fancy therapy or lesson I get her, she just can't do it the way everyone else does.  But she doesn't know that yet, and waiting and watching for that realization is one of the most torturous things I have ever endured.


A Mother of a Day

Some Mother's Days are like this:

This girl knows me so well. 

Some Mother's Days are like this: 
After I refused to hold her juice filled plate while also driving the van. She wants Daddy.

My Mother's Day was both, several times.  Emmeline is not a respecter of holidays and neither is teenage hormone Isa. At tuck in Isa and I were talking about it and I had an epiphany. "I understand that Emmeline doesn't process emotions like a normal person.  The problem is, I do". 
That makes it hard sometimes.  Really, really hard.  My girls give me emotional whiplash like nobody's business, but they're my girls, and I've been their Mom for another year.


The Down and Dirty

It's kind of my thing.  I say what everyone else is thinking, and then some.  Most of the time it's the funny things. Not so much of late.
I'm just going to lay it out there for anyone else who might be in the same spot. Solidarity and all that. Lately I haven't found anything funny.  If I'm not in a fog then I'm sad or raging pretty hard.  I have been having recurring dreams where I lose it.  Like, screaming, black out, might have a stroke in my dreams losing of the it. After the first one I hoped I'd feel better once I burned off all that steam.  But, like not eating carbs, I was left unfulfilled and still cranky. And so the rage dreams continue. Please refrain from telling me to do yoga, or meditate or some crap. Did it, done it, tired it.  As Bowler Hate Guy says:  "Everyone will tell you to let it go and move on, but don't! Instead, let it fester and boil inside of you! Take these feelings and lock them away. Let them fuel your actions. Let hate be your ally, and you will be capable of wonderful, horrid things. Heed my words, Goob: don't let it go". Sounds like solid advice to me.

I wouldn't say I believe in Karma per se.  Mostly because I think I'm a pretty good person. But I have TERRIBLE luck.  Josh tried to brush it off when I would talk about it but I'm pretty sure that even he is a believer now.  Shit happens to me.  Some big, some little.  But if someone is going to trip, drop something, hit something lose something or not get picked when being picked it good or get picked when getting picked is bad etc, that someone is me. It wears on you.  Most of it's little stuff but when all that stuff builds you're left feeling like "What the hell!? I totally braked for that bunny earlier today! Where's the love?" It's like Chinese water torture of bad luck.  Sure it's just a drop of water but when that 1000th drop hits your head, you could kill someone with your bare hands.
It makes for one cranky Megan. One that rage dreams, and says the F-word more than the average working mother. But life must go on, so you lock it up tight and go about your business.  Until the next drop of water hits your head and then you develop an eye twitch.

No Joke, as I wrote this the display died on my computer.  Computer Services was at a loss as to why.  Um, because it's mine...because it's mine.


Why I Run

Everyone runs for a reason.

I chuckle/gag when I run past a girl with perfume, matching workout outfit and earrings with her hair all fixed or a guy soaked in cologne.  What the heck are you doing out here!?  Leave the people who are sucking in air for all they are worth in peace so we don't have to choke on your fumes.
I get annoyed when a guy riding past on his bike slows down and takes off his sunglasses to make it even more obvious that he is looking me up and down.  Or the older ladies who give me judgemental looks.  No, I'm not wearing these compression shorts for attention.  I don't want to be stared at.  I wear them to avoid chafing.   Isn't that sexy?
I'm not running to fit into some cute outfit, or impress someone. It's hard and I'll be honest, I don't care enough about either of those things to really stick with it. I figure that's why I don't see many of those gussied up girls/guys out for a second run later on.  They figured out there were easier ways to get what they were running for.

The thing I run for is a constantly moving target.  No matter how fast I run or how far, the target keeps moving.  I run to be strong.  Not just regular strong.  I run to be strong enough to do this:

(Isa was making faces in all the other ones so I figured she'd rather have the back of her head;))

Strong enough to pick her up when she can no longer carry herself.  That amount of strength is constantly going up as she grows.  Eventually I wont be able to do it. I've had to add more variety than just running to help my muscles keep up.  But while I can I will.  I want her to play outside, go to the beach, see the view from the top of a mountain, and a million things other kids can just go do without a second thought.  All these things are hard for her and even if she tries she will get tired quickly and need help to reach her goals. It's motivating and heartbreaking all at once. 

So creepy sunglasses guy and little old lady can suck it.  I have my reason.



I ran across this little gem today on Facebook. It tells the story of 13 year old girl and her phone.  It is, in one word, heartbreaking.  This girl is living the life I fear for Isa.  Not that she is a bad kid.  She is academic and involved in sports.  She has a loving family and has all of her life necessities readily available.  It's just that dang phone.  There is too much at her fingertips and the fingertips of people who's brains aren't developed enough to handle or be responsible with it.  Oh, that damage they do.

Isa went through a time where she was actively trying to convince us to get her a phone.  I read the news, yeah no.  We got her an iPad mini.  Everything she does on it backs up to my iPad (including messages). She can't download anything without my password.  She can also only use it while on wifi so it limits her time. Does that make me too controlling?  Maybe in 4 years it will but now, not so much.  I watch Law and Order SVU people! Kids aren't capable of understanding the ramifications of their actions. Being a teenager is hard enough without worrying if your selfie is good enough and if you are getting enough likes.  (You know what I love?  Blogger just underlined the word 'selfie'.  It doesn't recognize it as a real word.  Yay blogger!). 

When I was Isa's age I spent quite a bit of time in a large holly tree in our backyard.  I would pretend I lived there and would climb to the top to see all the undiscovered wilderness I imagined was around me.  When the neighbor kids were home we would play, softball, soccer, steal the flag or build a hotel in the woods behind their house. We were outside using our imaginations.  It was liberating.  I felt independent.

Even with just an iPad, Isa can be like a zombie.  Always looking at something.  I talk to her and 5 minutes later she looks up realizing she never responded.  She has to check her score on a game or see if so and so messaged her back yet.  It makes me sad.  Sometimes I get excited when she misbehaves and I have an excuse to take it away.  After a while she isn't mad about it and actually spends time with me. We have real talks, or make something together.  I miss her. 

It's hard at school though.  Everyone has a phone and I guarantee if they knew I could read the messages they probably wouldn't txt her anymore. I wonder how many of their parents if any check their phones?  This is the time your kids are changing the most.  They are figuring out who they are and if you don't help them someone else will.  Do I really want someone on her electronic device teaching her what she's worth? Highly unlikely. Their brains are growing and learning so fast. Help them fill it with imagination and goodness!  There is so much time for all that grown up stuff (which is totally overrated).  childhood is so, so short.  Make them play outside, run in the sprinkler, ride their bikes, climb trees, dig in the dirt!  Hold on to it, they can't go back.



I have a dear friend who is in the hospital with her child.  It's hard to watch. The memories come back like a flood.  Being in the the hospital wears on you.  It's like as soon as that admit paperwork is processed you pick up this 50 pound bag of rocks and carry it with you everywhere.  It's exhausting and sometimes there seems to be no end in sight.  You might be there a day, week, months or even a year. The thing is, when you have a medically complicated child that bag never really goes away.  When you get to go home you just set it down for a bit, and as you slide it from your shoulders to the floor you know,  you will have to pick it back up again.  Maybe sooner rather than later, but you will have to carry it again. But next time it will be heavier because you will remember the last time.  The trauma builds.  When you come back it's like you never left. The fight is never over.

When Emmeline was a baby I didn't have any idea what was going to happen.  I didn't bond with her really.  That's not to say I didn't fight for and protect her.  I fought for her hard.  I didn't want to get too attached though.  I think deep down I thought she would die and I knew if I truly fell in love I wouldn't be able to handle it. Stupid I know.  I would have been a wreck either way but it was easier if in my mind I was merely her advocate and not her Mother.  She smelled like medical tape and antiseptic, not my baby. But someone had to fight for that tiny body and I did. Eventually I gave in to how much I loved her and made sure she knew it every second.  Just in case. She was there for so long and has been in and out of the hospital more times then I can count, wracking up 14 surgeries.  She's 7.

It's expected now and sadly feels normal.  When things happen with Emmeline and I tell people, they are concerned and worried.  When it doesn't land us in the hospital it seems like nothing.  Emmeline fell last week and cut her head.  Isa brought her into my office with blood flowing down her head and neck.  When I told people they were all concerned and shocked. They had nice, normal responses.  My response?  No big deal.  Clean, apply pressure and get her in to be glued.  Emmeline's response?  "Mommy I need to go to dance!  Just put a band aid on it!" Our reactions come with memories. 

For someone who has an average kid, going to get their head glued isn't a "normal" occurrence and probably freaks them out.

For someone who falls 50+ times a day, only cutting your head once seems pretty good. 

For someone who has stood by their child's bed as they are being bagged because they aren't able to breath on their own, a cut on the head is what I pray for.

I feel like every time we go to the hospital I add a rock to my bag.  It weighs more and more every time I have to pick it up.  But when it needs to be lifted I do.  Because if I can add the rock to my bag instead of Emmeline's I'd add two.


Up To Something

I got a txt and started frantically searching the Internet.  Hoping it was all a hoax.  No.  My number 1 was number 2 in the rule of 3s.  I started getting txts from friends but couldn't really answer.  My breakfast is still sitting on my desk next to me.  I keep flipping back and forth from wanting to eat everything and nothing.  Nothing is winning.  It's awkward at work. My office is a fish bowl so everyone can see me, but today it doesn't really matter. The people who know me know why I'm upset.
I first saw him in Robin Hood where I loved hating him. Then Sense and Sensibility where I loved loving him. After that, it was a done deal. I think that is where my love of the "older man" really bloomed.  His voice is intoxicating in the best way and he has a magical way of making you feel what he feels. Even as a manically depressed robot.
Part of me feels like today would be the best suited day to finally watch Harry Potter 7.2.  The other part of me is like "ARE YOU CRAZY!!! DON'T DO THAT!!! Having him die in reality and fantasy would be just too much.
He made me see that Snape was a good guy even when everyone else thought he was the worst.  He knew the motivation and even though it wasn't known to the reader then, you could see it. So complicated yet so simple and he made it look effortless. It was some of the best casting I have ever seen. He was exactly how I pictured it.

Josh got me these for Christmas and this was how I arraigned it first thing. It just felt right. Magical.

The hardest part for me about someone dying is that this is all you have to hold you over.  Nothing new. You can redo what you've done but don't get more.  And once that's it, it's hard. Especially when that someone is insanely talented and you know there was so much more in there...