My days are numbered...

At this point in the day I wish I were talking about the soap opera "Days of Our Lives" because at least I'd be getting paid.

3-The number of times Emeric stood on top of the table and touched the hot light bulbs(It takes him roughly .01 seconds from the time he leaves the floor until he's on top of the table.

4-Number of times Emeric went to his crib for "time out" which consists of sitting quietly in his crib for a minute or two and laughing when I come to get him.

20+- Number of times Emeric SHOULD HAVE went to his crib for "time out"

1- The number of chairs colored on with PERMANENT marker

2-The number of legs colored on with permanent marker

0- The number of times Emeric seemed to care that he'd done something he shouldn't do

The number of things I've lost track of:

The number of times Emeric stood at the kitchen gate crying:

The number of times the girls have screamed at Emeric for stealing their toys.

The number of times Emeric has pulled Kaydence's hair.

The number of times Emeric has climbed onto the counter, the back of the toilet bowl, or the sink.

The number of times Emeric antagonized his sisters.

The number of times Emeric told me "unt to" when he didn't want to do something.

2,348- The number of times random screaming and crying has been heard

It's really all in the editing. I took these pictures the other day but really they didn't look this cool until my sister edited them for me. I could fiddle with them more but truth be told I need a major tutorial before I really know what to do with them. I did a very minimal amount of editing to the last one and as you can see, her face is purple, so I obviously did something wrong there. LOL

Whirlwind weekend

We've had a very busy weekend. Jake's sister got married on Sunday so since Friday we've hardly been home. Saturday we went up to the church at 10:00 for a brunch, played ice hockey, went on a sleigh ride, ate supper, performed a song, and ended up home around 9:00pm. Sunday morning we had church and then practiced for our songs we had to perform at the wedding after church and then ran home, changed and headed back to church for pictures. The wedding went well and I actually wasn't nervous singing for a change! We were home a bit earlier last night and the kids were exhausted! Jill and Ben headed back for Oregon this morning and the girls were pretty sad. Although they held it together for Jill which was good. :)

I posted a ton of pictures on Facebook if you want to take a look. If you're on facebook and not my friend well, add me. If you aren't on facebook then I guess you're out of luck. :) I might post some pictures later but for now the kids are all yelling at me for something so I better go!

Christmas Pictures...

Gingerbread houses

My nephew Axton... I just love this picture. :)

Kaydence loves her new MP3 player

Merry Christmas!!!

I hope you all had a wonderful Christmas! Pictures to come. :)

My thoughts...

So, I have this other blog. It's pretty much private. There are a few people that read it but they're mostly friends online, a few family members too. I started it because I felt like I couldn't be really honest about my feelings with Emeric here. Or anywhere really. I have a few people I can talk to that really listen but most people tend to want to only hear the positive side to things. I can tell people get really uncomfortable when I'm honest about how I feel. Especially when that honesty shines light on the not so great things about this disease.

I don't enjoy complaining or want pity and I don't pretend like I have it horribly because I obviously don't. There are times when it's hard to believe Emeric has this disease. I know he really does but he's also fairly healthy and he looks good and that's where it stops with most people. Most people assume that because he looks this way that he'll stay this way. And that might be true. I'm not trying to imply that he's going to get very sick one day or anything like that because no one knows that. The reality of the disease is always in the back of my mind though because I know the possibilities. It's always in the back of my mind that he could get sick and die. It isn't some far fetched, impossible idea. It's a reality of Mitochondrial Disease.

I don't say all of this to make everyone depressed or even to make myself depressed. I say it because it helps me to be honest.

Something is wrong with Emeric's brain. Yes he's smart and he's starting to talk and he's funny and all that but there's something I cannot put my finger on, some missing connection. I've mentioned this before and people tend to say, "But he's so smart!" or something equally positive. And I know those things, I know he's smart but I also know that he's different. He isn't just delayed. This is something I don't think he'll outgrow or "catch up" with. It's hard not to compare him. I think we all compare our kids with other children, especially their peers.

Sometimes things really strike me in a way that I just feel this pit in my stomach. It's usually something seemingly insignificant to everyone around me. We were at my in law's the other night eating dinner and Jake's sister is home for Christmas and she was sitting at the table and Emeric was standing on the chair next to her and he was trying to count... "1, 2" he'd say and it was cute. And then he said, "1, 2" and just jumped. She wasn't paying attention but she caught him. And everyone laughed and it was funny. And then she would go back to eating and he'd do it again. And it just hit me that he didn't know to make sure that she'd catch him. He just jumped. She wasn't paying attention or looking at him or holding out her arms but he didn't care or know to care.

And I felt my stomach knot up because it was something so simple but such an obvious reminder to me that something is wrong in his brain. Something that prevents him from understanding. Sure he understands if I ask him to bring something to the garbage or to tell me where his belly button is but he doesn't read people well. If you scowl at him or you're crying he wouldn't be fazed. He'd probably laugh and maybe hit you in the face.

The thing is, as he gets older it's more obvious to me. In some ways he's made such huge progress and I think most people tend to associate progress with how much he's talking. But language aside there is something very different from him. I'm not saying it's bad or wrong, just different. And as with everything different it takes some accepting. And I'm not there yet. It's hard to accept things when you don't know for sure what to expect. When you're told that over 90% of children with Emeric's type of seizures end up mentally retarded I don't know how to feel or act. Do I stay optimistic and think he'll be in the 10%? Or that he's smart so there's no way he'll ever be retarded? Or do I try to be realistic knowing the odds are very, very high? See, that's my struggle. I don't want to live in denial not ever accepting the reality and I don't want to think of him as a label and underestimate him either.

I think what I most want from people is to accept the reality. Nothing is for sure and I know that and Emeric can beat any odds, I realize that. But those are the odds and I want people to be ok with knowing that.

Mental retardation is something most people don't understand. The majority of MR people are teachable, can hold jobs, etc. but I don't think people think of mental retardation that way. They think of people that are severely retarded and that isn't the norm.

And still...

Despite how "mild" it's still a very, very hard pill to swallow. Because it's a loss. It's a loss of normalcy, of what you expected. It's the realization that your child might face a lot of cruelty and hurt. Or it's the realization that your child might never understand the cruelty, might never even realize they're being made fun of. Maybe it's better that way?

I feel like I have to continually explain myself for fear someone might think I have no hope or that I'm never positive because that isn't true. These are the "back of the mind" thoughts. A big part of me doesn't think about these things all the time, or even frequently and a big part of me doesn't think of Emeric any differently a lot of the time. So, please don't think I don't know that he might be completely fine. I know there's that chance. But I'm his mother and so I think about these things. :)

Pictures!

We went to Grand Rapids this past weekend as my aunt and uncle had dinner planned at their house. I actually went up on Friday night and my sister and I got together with Angie and Lesley and played cards. Katie gave me her old camera so I've been taking pictures like a mad woman. Plan on seeing a lot of pictures. Unless of course my arm falls off first from carrying the thing around.

Kylie refused to be my subject and the ones I took of Kaydence didn't really turn out so here are a couple of Emeric. I don't exactly know how to use the camera well yet and I didn't do any editing but nonetheless here they are:

For some reason I like pictures with the head cut off I guess... I thought about editing out that tuft of hair that's sticking up. Yeah right.

I like this picture even though there are shadows, his head is cut off, he's drooling and he's having a seizure.

I think this one's a bit blurry.

Yes, now I realize the head is very much cut off here. I intended it that way. The camera isn't THAT heavy!

Take a few minutes and sit down...

I wrote another post below this today that I don't want to be missed so please read that too!

I'm copying a post written on a blog that I love reading because I know if I link to it than less people will take the time to click on the link(that takes a lot of time ;) ) and actually read it.

There are just some people that have such a way with words that you can read what they write and REALLY get it. In an actual, life changing way. And that's what this blog has been to me. I've told everyone I know to read this blog because it's been so meaningful to me. So, if you ever have a few hours and a few boxes of Kleenex go to Bring the Rain and read back from the beginning. It's really not that long and it's more than worth it. Just trust me. :)

But, until you have time I copied a post she wrote because it's nearly Christmas and this is related to Christmas. If you've never read her blog she is the wife to Todd Smith who sings in the Christian group Selah. They lost their daughter in April after she lived for 2 hours. They named her Audrey.

The Gift Giver

I was talking to a friend recently, and she reminded me of one of my favorite "Abby and Ellie" stories. I want to share it with you in the hopes that it brings a big smile to your face, and that you will have a chance to know my girls a little bit better.

On December 2nd, 2006, the girls turned 4. We decided that instead of a traditional birthday party, we would take an opportunity to teach them about sacrifice and generosity in a very concrete way. We asked guests to choose several "small-cost" items instead of gifts, and at the party, we packaged them all up as a group and later sent them to an orphanage in Africa. My in-laws are missionaries in Congo (Todd grew up there), and we thought that Abby and Ellie were at a level of understanding that would allow them to experience this as a true offering. It was an amazing night. The girls had so much fun while our house overflowed with friends and giving that I really don't think they noticed there were no gifts for them.

Fast-forward a few weeks. It was almost Christmas Day, and we decided to do some last minute shopping. I wasn't even going to bother trying for the "Santa's Lap" photo, due largely in part to the fact that we had made the mistake of going to the closest mall the year prior, and had gotten stuck with the chain-smoking Santa who weighed 115 pounds and decided that a good way to get children to like you is to run after them from behind and tickle them while laughing like a deranged jack-in-the-box. If you live in Nashville, you know the mall and the Santa I am referring to. My children are still convinced that the reindeer need to be fed every 20 minutes and that their food smells like Jack Daniels. We had to explain that he was a "helper," and would most certainly not be popping into our chimney on Christmas Eve.

I digress.

As we walked around the upper floor of the mall, Abby and Ellie spotted Santa downstairs. They stared at him for a few minutes and then (much to our great surprise), announced that they would like to meet him. Todd and I stared at each other. Not only was there about an hour's wait, but they weren't exactly "camera ready." But, if they wanted to meet the man, we weren't going to stop them. If you know them, you understand why this is a big deal. They practically dissolved when the Chick-Fil-A cow approached them with a balloon, and the Easter Bunny at our local Easter Egg Hunt didn't make it closer than 20 feet from us before he started calculating therapy bills.

The kid standing behind me in line had the kind of mom that came prepared. He was decked out in this little corduroy jumper with a giant hand-sewn reindeer face on the chest and real jingle bells on his antlers. Every step we took, he jingled menacingly while I stared at my children's uncombed hair and ripped jeans.

And then, in my moment of feeling like the loser mom who didn't create a fashion statement for the occasion, Abby's voice broke out above the crowd as we practiced what they were going to say to Santa Claus.

"I am going to tell him that I don't want any toys. I want him to give mine to the poor kids instead." She stared at me intently, like a girl who has made up her mind. My heart almost burst out of my chest.

She had redeemed me. I shot a glance at the mom behind me, confirming my new status as queen of the line.

I bet bell-boy doesn't have a world view.

Smugly (and oh, how Jesus loves this attitude...), I made my way through the line, pondering future nobel prizes and humanitarian work until the moment came to pass the red and gold rope. Abby had been practicing her speech under her breath while we waited, and now had it well-planned. We were ready.

"Next!"

Places, everyone. My kid is about to make Santa history.

At first, she hesitated. After a little prodding, she edged her way to the elf-lady and let her escort her to the big chair. She climbed up and looked at us, starting to panic. He was trying to reassure her as he showed her his stash of candy canes and talked about Rudolph. She wasn't listening.

"Abby, you practiced. Go ahead! Tell Santa what you want!" She looked at me and did the thing with her mouth that means there are tears and screaming on the way, and then, she did the last thing I ever imagined. She raised herself up, taller than she probably felt, and she looked Santa dead in the eye. That's it Abby. Don't give up now! You made it through the last hour and now is your chance to make a difference!
I felt like you could hear a pin drop when her little voice finally spoke. My Abby. My sweet, giving, caring, ever compassionate and selfless...

"I want a pink tutu. And I want sparkle ballet shoes."

My jaw hit the floor. It was loud and it wasn't over.

"And I want the purple barbie with the wings, and the movie about the dogs that can talk, and the tea set that is made of real china, and..."

Darn those reindeer jingles. Now they were mocking me.

Truth be told, I don't remember the specific list of everything that she asked for. I am quite certain that Santa himself couldn't keep up. I remember a flash going off and paying about $40 for a picture that still hangs in our playroom, reminding me of that moment. I asked Abby why she had changed her mind at the last minute and she said that she didn't know.
I have laughed my way through this entire post. I have always loved this image I carry of God as a director of sorts. He always knows what is going to come next, but He must just pop a bag of popcorn every now and then and watch it unfold below Him like a great movie.

Here is what He taught me then, and continues to teach me as I walk this narrow road.
It is one thing to be waiting in line, lost in a sea of faces and noise, formulating a good plan for how you are going to do things when the moment comes.

It is another thing altogether to be sitting on His lap.

There are moments in all of our lives where we have to put the rubber to the road. We have to look Him in the face and rest in the chaos that He has chosen to be our story. And we have to remember that we aren't that different from a four year old who just realized that what her heart wants in that moment doesn't line up with the big plan she had. There is something about asking Santa for toys that just makes sense. It makes sense the way that asking God for a healthy baby makes sense. It's His job. Miracles have been His business for thousands of years.

There have been many, many times on this journey that I have cried out for mercy, not thinking about the eternal consequences or the implications of what this meant for my faith. I just want my baby. I want her breath and her heart and her fingernails. Forget the whole "bigger picture" thing. I'm here with you, looking at you, and I know you can heal her. Do it. That's what I want.

Every day I have to remind myself that if God chooses another way for Audrey, I will be at peace because it is what my great Lord has ordained. I want this to invade my thoughts, to lift me from despair, to allow me press into Him with full weight. I want to really be able to curl up here and forget what I want and just enjoy and trust Him because He lets me get this close to Him.

I have an ultrasound tomorrow, and I feel anxious about it. Patti's supervisor will be scanning me, and I am praying that we will learn more about our girl. It is at 1:00, and then I go for an OB visit directly afterward to discuss the latest developments in her life. I know that your prayers will go before me, and will fill that dark room with hope that belies medicine. Thank you in advance for that offering on our behalf. As always, we are humbled and grateful for each of you...I will post soon to let you know how my appointment goes.
Angie

Asking for your prayers again...

I want to ask anyone that's reading this blog today to please say a prayer for my friend Lesley. I've talked about her before and there's a link to her blog if you want to read it. She's continually in need of prayer. Especially during the season of Christmas. It's not even imagineable to me what she's going through. I try to imagine it, try to feel just a glimpse of what she might be feeling, and it hurts. So, if it hurts for me just to imagine it I cannot even begin to guess how much it hurts for her going through it. The loss of a child is something I can't grasp and yet I try because I love Lesley and I want to carry her burden for her. I wish I could carry it all, just for one day, to take off some of the weight but I know I can't. So, I'm left with the only thing I CAN do and that is pray. Sometimes that doesn't feel like enough but I believe it is.

Gretta will never be forgotten. I have to wonder if that's a great fear among people that have lost children. That everyone else moves on when they feel like they can't. And I suppose it's true that we all move on but we never forget.

I only had the privilege of meeting Gretta once. I didn't live close and didn't get to see Lesley often but I've known her for 18 years. Her younger sister Angie and I were best friends growing up and when we were younger Angie would talk about Lesley in such a way that you knew how much she looked up to her. And because of that I started to look up to her too. As I got older and Lesley moved back I always loved talking to her because she always had such great words of wisdom. She would talk to you honestly. She'd be real with you and I loved that about her. I think of her as a sister because I practically grew up with her family. My dad wasn't around and before my mom got remarried Angie and Lesley's dad was the only man really in my life. He teased me a lot when I was around but I always felt like he loved me and even still there's just something special to me about him.

So the grief that this family has gone through and is still going through is always heavily on my heart. I ask that everyone would please lift Lesley, her husband Matt, their children Jordan, Mason, and Russell and up in their prayers. It doesn't matter if you don't know them because God does and knowing them or not knowing them makes no difference to God.

Wordless Wednesday

Not Me Monday

This week I did NOT let the kids open one of their Christmas presents to give them something to do since we were snowed in.

I did NOT bring Emeric in to speech therapy, drop him off with his nurse, and then drive back home to sit in peace and quiet for 3 hours.

I did NOT tell Kylie that Santa Claus only brings presents if you're good. I despise manipulating kids with Santa Claus so I would never succumb to doing it myself.

I did NOT lie to Kaydence when she found one of her Christmas presents and tell her it was for someone else's birthday.

So Merry Christmas and Happy lying and manipulating. :D

My fish died today.

What's with the animals around here? Are we such bad owners that they need to leave or die?

Sheesh.

So, our dog ran away. We haven't seen him since Thursday. I really wish I at least knew where he was or what happened to him. :( He's the first dog I actually really liked and he was such a nice dog.

*On another note, yes I know Emeric's hair is long and a mess in that picture of the 3 of them.
I had a worker at McDonald's tell me he needed a hair cut. I more or less gave her a dirty look and said, "Yeah." And then she said, "Well, at least his bangs!"

Because surely I haven't noticed his bangs are in his eyes and I'll definitely cut it if the lady at McDonald's thinks it needs to be cut!!

Not.

In reality I'd rather people leave my kid's hair alone. If I want it long and messy then dangit I will leave it long and messy.

Rant over.

Random Picture Post

Emeric's new orthodics

Emeric's drool catching bandana. Works much better than a bib b/c he can't pull it off!
Jake decided to bring the camera to the grocery store where I played piano last Saturday.

Kaydence's Birthday Party

I wanted to share some prayer requests of some families that need prayer right now. Since it's nearly Christmas I imagine it must be very, very hard to be going through what these families are going though.

First is Riley, a little girl with severe Epilepsy. I met her mom a few years ago in a Child Neurology forum and she's in the hospital right now having a very hard time. Please keep them in your prayers: http://www.caringbridge.org/visit/roo

Next, Ian and Evan Dustan. Ian is a little boy who has multiple issues and is suspected of possibly having Mitochondrial Disease. Recently his older brother Evan was diagnosed with cancer and their family is really going through a difficult time. http://www.caringbridge.org/visit/iandustan

Then, for Kelly, Jenelle's mom. Jenelly has Epilepsy and mental retardation and recently her mom was also diagnosed with cancer.

http://jenellesjourney.blogspot.com/

Out of the mouths of brats... Or is it babes?

Kylie told me this morning that from where she was standing it looked like I had a baby in my tummy because it was "getting a little bigger".

Isn't she charming?

She's right about one thing and it isn't the baby in my tummy. The baby makers have been swimming in the dead sea for a while now.

Kaydence's Birthday

Today was Kaydence's 4th birthday! We had a party and she got a lot of stuff she really liked. Lots of Polly Pockets which are always fun while they last(which is approximately 1 day around here! ) She had a Princess themed party with a princess cake. Jake heard her in her bed singing Happy Birthday to herself. LOL She seems like she might be getting sick. I guess we'll find out tomorrow.

I'm too lazy to upload pictures right now so maybe tomorrow. :)

Never say never...

Did you know that there were two planets visible recently and that supposedly we'll not see that again for another 50 years?

Well, I missed it. And so I guess my husband decided to provide me with a sight as equally amazing:

*I must add that Jake does help out a lot around the house but that usually consists of doing the dishes or sometimes laundry. I have NEVER seen him mop the floors or clean the bathrooms. He even intentionally put on work clothes for the occasion because he figured he would get dirty. LOL

He didn't want me to take pictures because I told him I was going to feature him on my blog and he said, "I don't want the whole world to see me!" I assured him that the whole world in fact does not read my blog. :)