Thursday, November 3, 2011

Can I hate life? I feel like I do, right now. Just had a fricking eye appointment for Edward. I was sooooo hoping/praying that we would be spared eye problems. NOPE. Turns out, Edward needs glasses, a mri, and maybe surgery. I really don't want to talk about the details for some reason. Nothing terrible but just don't feel like it. I am fighting off the anger that I am feeling and don't want to stir the pot, so to speak. Man, I hate the world. I guess I shouldn't have expected anything different. Edward does have Freeman Sheldon Syndrome. It's funny. I never see or even think/remember that he has FSS. He is just Edward to me and I LOVE him soooooo much. Last Sunday, I was looking up more info on FSS and I just got sooooooo freaking depressed. It reminded me how much I f*ing dislike/hate that my sweet boy has it or anything for that matter. So, I called on some people to help 'set me straight.' I guess it helped for like a minute or two but it really didn't get the job done. I need a slap/hard hit from the 'humble stick...branch...more like LOG'. I have soo much to be thankful for but can't seem to crawl my way out of this. This eye thing didn't help any. Plus, I feel all alone in all of this. Adam is great and loves Edward to pieces, don't get me wrong!, but we are not on the same page. He is not quite where I am at. So, I feel all alone. (I can say this because he doesn't read this anyways. haha) I will probably regret writing all this bologna but right now I don't care. Whatever. Don't worry, I will get over this. My stupid hormones are just getting the best of me. Next post I will be happy as can be....promise.

love of my life

cookie monster
little skeleton...thought it was appropriate 


  1. Random internet stranger here. From my point of view:
    #1, I think that is one of the most beautiful/stressful/heartbreaking things about motherhood - being able to see right past any imperfections (because our children ARE perfect, they are just as they should be right?), but knowing that those are the first thing that anyone else will see and focus on, when there is sooo much more to any child than a diagnosis.
    #2, Getting diagnosis after diagnosis, even when you kind of know that there's a good chance that your child would or could have these problems is never easy to accept. It's so much easier to think 'why my child? what did he do?' or 'why me?' And I think for our own sanity after the initial diagnosis, we always want to think, 'well, my child will be different, mine will not be as severe as others, mine will still function 'normally.' But when that doesn't become reality, again, it's so easy to be disapointed. The ship is continually being upset. When (and maybe this is [gulp] an 'if') things calm down and settle into some sort of a routine, you will start to feel better. Right now, I imagine, this looks like a massive mountain to climb.
    #3, My husband chose not to think and involve himself in the nitty-gritty details of our son's heart defect. I on the other hand immersed myself in any and all information I could find. My husband took the ignorance is bliss route, I went with cold hard facts. He slept at night, I laid awake fretting about little things. But there was a blance there. When he didn't fully undertand something, he came to me. When I really needed a rosy outlook, I went to him. I can't quite tell from your post where the two of you are at, but I hope that despite the different coping strategies, you can find a balance and find strength from the other.
    #4, Don't feel bad about your feelings and what you are writing. You won't always feel this way. Your feelings are valid and this blog is an outlet making a time and place. I sincerely hope that in two months, six months, a year, you'll be able to look back at this and see how much better things got.
    #5, Edward is as cute as ever.

  2. Holy cow, that turned out a lot longer than I thought. Sorry for eating up so much space!
    Hang in there momma, you can do this.

  3. Thank you! That really was a nice outlook. It is exactly how you say it. Even though I should have expected all this, I was sooo hoping that 'my baby' would not have to deal with it. 'My kid' was special and less severe. You totally nailed it. So, it was just a big blow to my ego. Thank you for your comment! Ps....i am ashamed to admit it but the whole glasses thing hurts my heart because of the superficial aspect. i hate how it will make him look...but like you said...he is soooo perfect in his mom's eye's/mine that i wish everybody who sees him can see the things i see! Thank you again...i feel better!

  4. Oh Janessa. Hugs and prayers right now. I do understand a little bit ... every time we got "another" diagnosis for Matthew, it was SO hard. ...when he DID have sleep apnea, when he DID have severe speech delays, when he DID have ear problems ... and Noah & Alyssa are absolutely right - the last thing you need is to beat yourself up about how you are feeling. You feel how you feel, and that's o.k. right now. You are such a wonderful and loving mother to both of your boys, of COURSE it breaks your heat every time there is One. More. Thing.

    I want to tell you what Micah said the other day. He read a book where one character was teasing another because the 1st guy looked different. He didn't "get it" at all! He couldn't understand why someone would be mean to this guy just because he looked different! We talked about how we would never do that, of course, but there are people who do ... and that some people might not be nice to Matthew since he doesn't talk as well as other kids (and this just broke Micah's heart.) We talked about that baby Edward looks a little bit different than other babies, but he's just he same on the inside ... and Micah replied:

    "Mommy! I don't think Edward looks any different! I think he's just as cute as any other baby! I think he's just as cute as ME when I was a baby! He's perfect!"

    So... that's how his cousin Micah sees him, and always will. We love all of you.