2017/10/08

'Tis The Season

Early October is always hard for me.  It has become my scheduled extra worry time.  Today marks the morning of Emmeline's first of many surgeries.  It's hard to think back on what I thought my life would be like then and what it has turned into in reality.  When you're told your baby needs surgery, you assume it's just the one.  That they will fix whatever minor problem there is and you'll be able to get back to your "normal" life with a newborn. 

For us, this was just the beginning of a long, rough road.  Just 2 short days after this first surgery, we would be admitted to the hospital for 6 weeks after Emmeline stopped breathing. I would live 2 hours from home, half of the 6 weeks at the hospital and half at the Ronald McDonald House. Emmeline would endure 5 surgeries and countless test during that first hospital stay.  In the end they only sent us home because they had no idea what else to do for her and were afraid she would get sick if she stayed in the hospital during flu season. We settled in at home with a portable hospital room.  The only thing I couldn't do was start an IV.

That time was such a blur. I remember a lot of tears, anger and sadness.  Watching your child struggle to breathe, eat, and feeling just plain miserable was beyond heartbreaking.  She hated to be held by the time we got home because she basically only got picked up at the hospital for tests, so she associated begin touched with pain. Holding her while her little body flailed, trying to get away, was shattering. 

To date, Emmeline has had 14 surgeries and has probably been sedated close to 50 times.  It's been a rough road, for all of us.  She's the toughest person I know. I wonder if she even knows that? To her this is just her life. She's never known anything different.  I know though.  I know how much harder she has to try to do pretty much everything that just comes naturally to her peers. I still get angry about it.  Why her? Why does her life have to be so hard? She has the same dreams and desires about her adult life as any kid.  I hate that I know some of those things are impossible.

For some reason October triggers all these memories and fears about the future. As the leaves fall, so does my sanity. Thankfully,  Emmeline isn't having acute near death experiences on a regular basis anymore.  She can walk, talk, cuddle, draw, run, skip!, ride a bike and so many more things doctors told us she likely would never do. Like I said, she's the toughest person I know.  I just wish she hadn't been put in situation where she proved that at such a young age.

2017/05/17

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.

2017/05/15

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.


2017/05/11

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.