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.
2-The number of legs colored on with permanent marker
Posted by Nicole at 3:22 PM
Posted by Nicole at 9:07 PM
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!
Posted by Nicole at 2:19 PM
Posted by Nicole at 12:51 PM
Posted by Nicole at 7:16 PM
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.
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. :)
Posted by Nicole at 7:16 AM
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.
Posted by Nicole at 5:22 AM
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.
Posted by Nicole at 10:53 AM
Posted by Nicole at 10:18 AM
Posted by Nicole at 8:52 AM
Posted by Nicole at 8:51 AM
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!!
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.
Posted by Nicole at 9:04 PM
Posted by Nicole at 2:14 PM
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.
Posted by Nicole at 1:00 PM
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.
Posted by Nicole at 8:14 PM
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. :)
Posted by Nicole at 8:26 PM
Posted by Nicole at 11:39 AM