Still life?

You know all those "Still Life" paintings that were painted with artfully placed bowls and fruit and such? 

Yeah. 

Not happening if you have kids. 

I can barely catch something with a camera. 

Yesterday I made a plate of pancakes for lunch (breakfast/lunch) and put Kayla in her high chair. I put the plate down on the table, turned my back for a second to address an issue Evan was having involving a toy and a too-small hole, and turned to find my plate of pancakes had magically slid onto Kayla's high chair tray. 

Thankfully, it was a paper plate (yeah, I got class).  Taking that towering plate of pancakes away from my daughter was like trying to convince a cat to go swimming. I swear her hair stood on end. 

And Evan was all like:

Kidding. I just love that picture. 

I am sleep deprived thanks to the usual Mommy routine.  Kayla has had some issues the past 4 nights. 

She's mocking me here. 

In other news, Evan gained 4 pounds in just a month. All without using his gbutton at all. 

I'm exhausted for multiple reasons, and chasing him around trying to shove food into his mouth is one of them. 

This is reason #80

See how I can't even take an un-blurry pic?  These kids are always moving. 

It took me 30 tries to get this picture. Evan has pudding on his shirt. 

Who needs a "Still Life" when you got a kid that is able to run forward, turn around and tell me to "go get up" (his version of "hurry up") 

I'll take that any day, despite my obvious exhaustion. 

Goodbye 2013

Goodbye 2013!  You brought many good things and many difficulties. 

Here's hoping for a smoother ride in 2014.  

In the meantime, look how cute my kids were at Christmas. 

It's the most wonderful time of the year

It's the most wonderful time of the year! 

At least that's what the Christmas songs would have you believe. I do enjoy Christmas, though. 

I do feel that this Christmas season has been dampened a bit by circumstances. 

There's not a lot going on in regards to Christmas cheer. 

Don't get me wrong, we've got our tree up, and took the pictures of the kids in Santa hats. 

They were adorable. 

I've been baking cookies like crazy, and though I've found a form of therapy in that task, I find my cookie decorating skills sadly wanting. 

Tasty, tasty ugly cookies warm from the oven.  Mmmmmmm. 

We've had a few interesting things occur recently.  

A major ice storm rolled through and dumped a lot of sleet and ice on us, so we were kind of stuck inside for quite a few days.  It's no fun playing outside when all you do is slip and the wind bites. 

Kayla is crawling everywhere. The determined little thing will quietly crawl to her goal, grab whatever got her attention, and like a minature ninja, will sneak up on me when my attention is elsewhere.  She's pulling up on everything, frustrated with the indignity of crawling and wants to stand like everyone else does. 

Evan is doing good. He caught a stomach bug and we had a couple of terrible days of spontaneous vomiting and little to no eating/liquid. It got bad enough I considered taking him to the ER because he didn't take any liquid for so long. 

But he got better. 

We haven't had to use the g-button, at all. 

I'm hoping to get it removed with no fuss in the spring. 

Evan is doing okay. He is always such a sweet boy.  He comes up to me and says "hiiiiii" in his own particular way, and hugs my legs, then walks off. 

I've debating taking the kids to see Santa this year. I want to, but feel like the mall with all it's noise and pack of people would make Evan feel a bit overwhelmed. I notice he tends to do better when we go shopping for groceries at less popular hours than when the place is packed. 

He's become very intently interested in letters and numbers. He'll point to a letter or number and say "This?" So I tell him what that letter or symbol is.  

I've been having a hard time with certain things though. After my initial burst of activity after his diagnosis of autism, I have done nothing. 

I mean, we still go to therapy, we still do all the things we normally would do..... But I have yet to make contact with other parents. I haven't quite gotten up the motivation to start calling and inquiring about other programs we can take advantage of. 

And that's okay, I'll get there. 

In the meantime, I'm going to bake cookies, take the kids to the park, take Evan to his therapy and try to have a very Merry Christmas.  

 It won't truly be that hard to be merry. 

Thankful

Every year, I am so thankful. I'm thankful for my family, immediate, extended and in-laws, and thankful I am alive and with my kids.  I am thankful I was given the opportunity to be a mother at all, that Evan was born, that just when I was getting used to being everything being his Momma entails, Kayla came along and shook things up. I am thankful she was healthy and has such a big personality. 

I am thankful to have a roof over my head, to have reliable transportation, and to have food in our bellies and clean water. 

I am thankful to have been given all  the opportunities I have.  And that I have been given the opportunity to learn from my (sometimes monumental) mistakes. 

I am thankful for all the wonderful people who have helped care for Evan through the years. From the day he was born til today, he has had so many people care for him, I have lost count. 

I am thankful for my life. It's not perfect. It's not traditionally beautiful. 

But it's my life and I love it. 

How much information is too much?

In the wake of the terrible and well-documented hoax involving Brad Paisley and his wife and a stranger who stole pictures of a real child with cancer... (Read more here: http://news.yahoo.com/blogs/nightline-fix-abc-news/elaborate-hoax-lures-brad-paisley-kimberly-williams-paisley-153350254.html?vp=1 ) 

I feel the need to question- How much information should I share about my child online, accessible to everyone?  It is a parent's responsibility to protect our children, but at the same time, some of us desperately want to share the beautiful story of their lives. We want to create awareness, to show mothers who are going through a terrible time that there is hope and beauty and joy that can come from their journey. We want to show that there are enormous obstacles, but in order to overcome our fear, it helps to take away the unknown factor. 

To help our children and to help families everywhere and to help others understand, we sometimes share photos that are heart-wrenching and show the worst moments. 

This isn't shared for sympathy, but because we know that if we share these images, it might help someone down the road, if only by taking away the fear of the unknown. 

You all have likely seen the images of children with cancer or birth defects on Facebook, with the message "Like= $1" or "Like if you have a heart, ignore if you don't".  

These images are most likely part of the public domain, released as part of a news story.  And someone totally unrelated to the child in question is simply using the image to gain likes on their page. 

Beyond that, there are the people that use these images for far more sinister purposes, such as the story above. 

Now, I actually have sympathy for the people who feel the need to use such images to garner attention and public sympathy.  They are sad individuals that really need help, and this is a way they are reaching out. 

However, it doesn't excuse the fact that they are fabricating a person using someone else's very real pain. 

Things like this hurt the cause of so many parents who are only trying to bring awareness to the world. To make the world a better place for their children. 

I've often witnessed mothers being told that they're lying to gain sympathy, that they're making too much fuss out of nothing.

We see this happen a lot. Sometimes because people are more prone to think that stuff like this doesn't happen to real people. So they say we're lying. 

It hurts. 

So here is my statement in regards to all posts and pictures on my blog: 

These images are mine. These words are mine. If you use any part of my blog without my permission, you will be subject to what laws apply. 

In addition to that, if I find ANYONE profiting either monetarily or emotionally from images of my son's pain, I will not let it go until I track you down, personally.  

Consider this statement my copyright. 

Autism

Okay, so the subject is stark and unadorned.  Just like what I have to say. 

Because of Evan's still-significant delays in speech, and some behaviors that alerted me, we requested an assessment by a developmental pediatrician. 

After she did her assessment, her conclusion was that Evan exhibited mild to moderate signs of autism. 

Even though I was prepared for this diagnosis, I am currently trying to plan for all that comes next. 

Luckily, he's not yet 2 1/2 and early intervention can be a big help. 

<3 

<3

The reality

I joke a lot. I mean A LOT. It's my way of dealing with stress.  

Example: As I was getting my latest c-section, I noticed if I looked hard enough, I could see the reflection of what they were doing (I.e. cutting me open to extract my child). Did I crack a joke?  Why yes, yes I did.

It sounds crazy.   My doctor commented on it months later, so it must've made an impression on her.  

But it's how I deal with tough emotions. 

I joke a lot about Evan and his medical issues.  

Here's the reality: I am incredibly lucky to have Evan with me today. There were times his life was in the balance and I didn't even accept how bad off he was. 

I've seen him stop breathing, I've seen him struggle, I've seen him slowly decline, and I finally saw him thrive. 

The memory of him struggling to survive will never leave me. I will always worry about him.

He is doing fantastic, and I anticipate he will continue to do so. But there is no guarantee. 

Our support group lost another baby yesterday. This child fought and was beautiful and really joyful and sweet. She was two years old. And something went wrong. 

My heart hurts for her family. Hurts so bad.

I've recently seen many beautiful children pass away, some from cancer, some from complications associated with their omphalocele.  I loved them, and I ache for their family. 

The reality is that each and every person needs to realize that every day you have with your child is a treasure. It's a gift, it's phenomenal.  Yes, it's tough and it's trying at times. But I can't help but feel grateful for every second.