When it rains, it pours. Well, I can see clearly now the rain is gone! Cheesy, I know.

Christmas pic 2011

I was really having a terrible time with myself this past month, month and a half. Just going in and out of pity parties and feeling bad about my situation. I think I was slowing down in my daily routine and I was scared to feel my hurt. I realized that I had been keeping myself super busy so I wouldn't feel the absolute heartbreak that I feel from time to time. (Just writing that makes me cry.) When I have time to think about the reality of my situation, my heart hurts, kinda like a bad breakup times a million. Then, Harv was watching a Veggie Tales movie and I had walked into the room during the 'lesson' part. Bob the Tomato was telling Larry the Cucumber that a thankful heart is a happy heart. hahaha That did it. Snapped me out of it! I have my days and my heart still severely hurts but with time it will heal. God is good and I am very thankful for my beautiful family.
So I have been obsessed with couponing lately. I have become an addict who needs to get stuff on the freap. It keeps me busy.

love this one!

Get this. Just yesterday, I was seriously obsessing over how to get Edward an ipad. I was calling, asking around if anybody had any good ideas on how to get one on the cheap. That morning, I was reading Edward a daily devotion entitled "Grace-filled waiting." Trust God through your struggles and have faith that He will provide. My favorite verse was, "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." 2 Corinthians 4:17 Sidetracked, anyway, so while I was at physical therapy, asking my pt about the ipad, Adam calls me and says that his boss just bought him an ipad for Christmas! Are you kidding me?! Unreal how the Lord worked right before my eyes. What an absolute blessing! Adam was telling his boss how we were saving for an ipad because we thought that Edward would really benefit from some special needs apps on it. Then he went out on his lunch break and Adam finished with a patient and it was sitting on his desk! Isn't that crazy nice?!

Blows

The blows just keep on coming. We had a bunch of appointments in Seattle the past three days and each one seemed to be pretty depressing. Edward had xray's of his hips and feet. We met with a new orthopedic doctor, Dr. Mosca, who is a foot expert, and he talked with us about his opinion on his feet and hips. In short, Edward's feet have kinda broken down and the bones are not in the right place and are not formed correctly. He also said that surgery on his hips might not be an option because they are extremely tight. Then we had an appointment with our cranio-facial doc and he was concerned Edward's weight. He is still only 9.12 lbs. Of course we had pt and ot appointments, then our last appointment was with Dr. Song. He thinks that Edward needs an mri done of his spine and hips. (tentatively scheduled for the end of December.) The story with his hips are that we need to make sure that he has an adequate socket or even a socket to begin with. (They formed out of socket at 9 weeks gestation.) So, if his hips were able to move down, they would have a place to go. Does that make sense? And as you know, his spine is progressively getting worse. If it continues like this, then we will need to do bracing right away. SUCK. All this is SUCK. I am seriously trying to truck along with all of these blows. I just want Edward to be ok. I just want him to not have to deal with this stuff. Lord, just let one thing be perfect for Edward. I know God's will is perfect, but I just want to suggest a couple things He could fix that could make His will even MORE perfect. :)

he makes me feel better

In the end, if you would like to pray, which would be wonderful, you could pray that his spine gets better, his feet surgery goes perfectly, that his hips will be able to go into his sockets that are, Lord willingly, there, and that I am able to keep my fake "everything is great" smile plastered on. 

It could be worse. I have tons to be thankful for. No really, I got this.

Need I say more?!

 

They are a little big, but couldn't you just love him to pieces? I can't get enough of him.

Life?

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!

http://vimeo.com/32811933

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 

Regression/broken

Well, you will never guess what. Edward has a hairline fracture in his knee. He was super-duper crabby yesterday and whenever I picked him up or moved him, he screamed. When I taped his feet, I knew something was wrong. Then I noticed that he wouldn't move his leg. And...I think I remember what happened...Harvey threw the controllers or a toy, I can't remember which one, and it hit Edward. Unreal. If it's not one thing, it's the other. Dear Lord, help me help Edward.

splint up to his waist for fractured knee

Month one, broken arm. Month six, broken knee. Month ten?...hip and feet surgery. Oh joy. Poor baby. I will remember, "in all things give thanks." The devil will not defeat us and we will count our blessings. No biggie...we got this...what is a fractured knee, anyway!?

I am much better now. Life gets overwhelming, at times, but nothing worth having is easy. Jesus loves me and won't give me more then I can handle. Even though, many times last week I told God enough!

oh boy

sweetest thing

sweet boys

The book I am reading is pretty good. It makes me realize how important prayer is and how it can make a difference. I was going through a stage, weeks back, about not knowing the purpose of prayer. My rationale was, since God is omnipotent then what is the point? My prayers don't matter. For example, I prayed and prayed and prayed when I was pregnant with Edward and God didn't change the outcome. God has His will and knows what is best for us, right? So, no matter how hard I prayed, He still did what He wanted. I don't know. Prayer is confusing. So many pastors tell you how to pray. Is there a specific way to pray that I am not getting? But, also, in the Bible it says that sometimes we don't know how to pray and that the Holy Spirit will intervene for us and ask what we cannot. "In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans." Romans 8:26   This is a verse that helped me when pregnant. This is why I prayed and prayed. "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" Philippians 4:6-7.  Don't get me wrong here. I believe in prayer. It says in the Bible that prayers are powerful and effective and that God hears all prayers. "And I will do whatever you ask in my name, so that the Son may bring glory to the Father. You may ask me for anything in my name, and I will do it" John 14:13-14. I believe that the words in the Bible are true. I guess my thing was, if God's will be done and He knows what is best for us, then why should I ask for the things that I think I want?

P.s. Happy SIX months to my sweet Edward! (seems like years ago..)