Tuesday, December 23, 2008

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. :)


Kelley said...

Thank you for sharing that, Nicole. I wish I could do something to help, but know that I pray for you, Emeric, and your family every day.

karri said...

you amaze me!! you have so much to think about! you always amaze me. you seem to have such great strength. i pray that god continues to give you what you need daily! i know you have shared with me before and i want you to know that you can share anytime. i usually do not know what to say, but i am hear to listen and support you! your family means alot to our family and we love you guys! those pictures of emers is so cute!! have a super snowy day!

MJ said...

I think one of the hardest things in life is learning to accept the changes of how things "should be". Leaving our expectations behind and just living with what we have, knowing any day it could change and never be the same again. Most of us never even have to think about it, as our lives go along according to plan. If things go along a normal path we are never faced with such struggles. We get married, some of us anyway(=, we have kids, our kids get older, our parents get older, everything goes along just like everyone else.

Then some of us are faced with changes, parents that die before we do, kids that die before we do, kids that will always need their parents and might never live up to what we would wish for them. It is hard to accept it, to move on with your life which is no longer just like everyone else. You don't feel the same as everyone else, you feel forever changed, seeing things in a different way.

Good luck with your journey I hope the sorrow of what is lost gets easier to deal with and that you can find some peace with the uncertainty of what might come.

John and Melissa said...

Hello Nicole,
I don't even know how I ran across your blog, but I have a child with a mitochondrial disease. Our situation is somewhat different than yours, because we are older parents (52 & 53) and our son is adopted. He is almost six. We also have grown children. We are very "involved" (for lack of a better word) at Texas Children's Hospital in Houston, Texas and have some wonderful doctors there. I know from just the tiny bit of your blog that I read that our son has struggled with some of the problems that "Emeric" has. If you ever have any questions or I can help you in anyway please feel free to contact me. I have not used our google/blogger in a very long time, so there is nothing on our page. My husband and I also do some part time photography for family and friends. I see you have a camera!!!
Melissa A Lively

jswiers said...

I'm so glad you wrote this entry.

I wish I knew how to be supportive, honest, realistic and still love the pants off him and accept him for who he is. Sometimes, it feels like if we all laugh and play and get excited about Emeric's progress, that its frustrating to you that we aren't being realistic. How can we do both? Because I think that's really important. For you and the rest of Emeric's family. Do you have any suggestions for how we could do both better Nicole?

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