Monday, November 28, 2011


When it rains it pours. The day after Edward's eye appointment we had some xray's of Edward's spine. Unfortunately, his spine is worse then the doc had expected. Boo. Then I was told that Dr. Song from Seattle Children's', who was going to do Edward's hips and feet, is leaving and going to LA. That was a tough week. Such is life.
One year ago tomorrow was when I found out about Edward. It has been one frickin hard year. I will never forget how oblivious I was to the ultrasound tech coming back and forth needing more pictures. I just thought she was doing it for me so I could know the sex. Finally, she had said, "you probably know by now that something is not right." Lol....NOPE! I instantly burst into tears. I tried to gather my emotions so I could make it to the elevator and Adam. Went home, cried. Came back for the meeting with my OB. Cried some more. My OB told me that she believed it was Trisomy 18. I didn't know what that was. Adam's reaction to that was so profound that I instantly lost it. The rest was a blur. The next day, Harv and I went shopping and I remember just walking around wondering if people knew that I was carrying a 'sick' baby.  I also remember driving and coming to a conclusion with the Lord that I could handle this...I got this I told Him. I told Him that no matter what happens with my baby that I would always love Him and that He has me. The next day we met with our geneticist and made the tough decision to have an amnio. When we sat down with our geneticist the first thing I told her was, "do not even mention abortion." But, stupidly, I asked her if it were her, what would she do. She said terminate. This was a Thursday. Friday, the results came back and they couldn't find anything! No Trisomy 18, aka Edward's syndrome! Then the next Monday, I got some sorta food poisoning and spent the night in the ER. I never vomited so hard in my life. I can't believe that that was only one year ago. Such is life.
In the spirit of Thanksgiving, I just want to say that I am so thankful for God's grace. I know that it is grace and grace alone that I am saved. There is NOTHING I can do, no amount of niceness that I can exude that will get me to heaven. If I thought that being 'nice' would get me to heaven, then Lord have mercy. It is God's gift through faith so that I can't take credit. It is so simple. I don't understand why people have to muddy it up.
Edward's spine

sweet thing
Guess what! Edward says momma! I have proof!

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