How do you go on?

When someone dies you know what is expected for the family. The million and one details, then comes the funeral (you dress in all black) the wake (you bring food, serve the guests, clean up aftewards) and then you slowly and painful go on with life. Time marches on and heals the ache in your heart. Not always but you don't walk around sobbing for the rest of your life. 

This is different. This I don't know how to deal. How do you look at your smiley daughter crawling on the floor, feeding herself cheerios and banging toys together, and NOT cry? Cry because you know what's coming. Cry because you want so desprately to stop time. Every milestone, every achievement every therapy session is bittersweet. Joy mixed with tears. I have a pain in my heart that is sharp it takes my breath away sometimes. I know I should cherish every moment with her, not think to the future, pray because God can work amazing things. I know this in my head. But my heart won't stop breaking. My love for God has not changed, my faith in Him has not waiverd, but honestly I am so broken down I have to look up to see the floor.

Answers for Chloe

A mother knows. A mother knows there is something wrong when she looks in the eyes of her newborn. She knows when her precious baby doesn't hit milestones or reach for her in the the "clingy" stage. A mother knows when her gut and instincts all scream "SOMETHING ISN"T RIGHT" And a mother knows when she would give all that she has to be wrong.

Today I got the call that ended the searching phase we have been in since roughly November 2010. I thought I had it all figured out. I thought that I had solved the puzzle. I didn't want to be right. I wasn't. I suppose I should have felt relieved. Some people start the searching phase and end up being in it for years. I didn't.

Rett Syndrome. two words that changed our lives forever. I had heard of it, once or twice I have scanned the symptoms only to quickly dismiss it. The outcome isn't good. But the blood test came back and it's Rett Syndrome. I honestly don't know much about it. I know more about it now than I did 24 hours ago though. Here's what I know, but seriously if you want to know more then I strongly urge you to go to http://www.nichd.nih.gov/ and look up Rett Syndrome.

It's rare: only 1 in every 10,000 to 25,000 live births result in a Rett Syndrome birth
It only affects girls with I think 2 exceptions ever. the reason is long and technical and has to do with X and Y chromosomes.
Unlike Angelman Syndrome which affects the chromosomes, Rett affects a single gene.
Rett Syndrome isn't degenerative but it is regressive. (I'm still fuzzy on the difference)
Rett Syndrome will eventually take my baby's ability to walk and crawl away.
She may learn to talk eventually but even that will be taken from her.
There are 4 phases of progression with Rett Syndrome
Early Onset Phase- she will stop developing
Rapid Destructive Phase-she will lose or regress learned skills quickly,* this phase is the hardest to swallow. It breaks my heart over and over* Purposeful hand movement and speech are the first to be lost......
Plateau Phase- regression slows. Seizures and movement problems are common in this stage. and most girls spend the majority of their time here
Late Motor Deterioration Phase- girls with either become stiff or lose muscle tome and some become immobile.


The reality of this is washing over me in waves of grief. Our life will never be the same. We are thinking about the future and trying not to be scared but we know that we need a house that is more open and handicap accessible. We will need a van that is modified to help us. And we need a communication device so we can communicate with Chloe. the list could go on and on. For now I will just have to take sleep. I will write again sooner than last time.

Crappy Sherbert

Ok so you know how if you're at a fancy dinner and you get that little tiny bowl of sherbert to get you prepped for your meal. I got that once and I was like "ohhh this is tasty!" but then the next course came and I was like "oh that was crap compared to this!!!" I had that experience this past week. When we did the Westboro thing it was great, it was like the sherbert to my otherwise mundane life. Then this week happened. World Changers came and I saw people, men, women, teens on fire for God and serving. Without care for denomination or creed or church membership. There were people that wanted to help and serve just like me. For nothing more than to bring God glory. Unless we all have a heart for service. Unless we pour out ourselves. Unless we make much of Him and less of us. Unless....

Kids don't try this at home....

Ok so I (with the help of my super smart friends who are WAY cooler than me) figured out a medical mystery. Yesterday was a busy day for me (as you can see from my previous post) as were the days (week actually) before that.To keep up I was stupid. Yep, it's not like I haven't admitted that before but I think that yesterday may have been a shining example of that. See, I am on prescription diet pills. They are very effective and they give me tons of energy. Well, yesterday I combined that with a Mountain Dew, followed a little later with a Red Bull and only one meal the whole day. Not only did it give me diarrhea of the mouth (I talk WAY to much when I'm on them with absolutely NO thought filter) but today I actually had a vein in my hand spontaneously rupture. It's nasty looking and it hurts. Did I already mention that I know it was dumb? So please refrain from telling me how bad that is, or how Caffeine is the devil. It scared me, getting on to me now won't help. I like to think I'm not entirely as dumb as a box of rocks so I get it and I won't do it again. However if there is someone out there that reads this obscure blog by this obscure girl and is about to take a Rx diet pill and wash it down with a red bull on an empty stomach I would say... DON'T DO IT!!!!
The good news is that it will heal with ice and rest. (per my super smart friends) so.... lesson number two. If you are going to serve others, don't kill yourself in the process. Just like the flight attendant says you have to put your air mask on first before your kids (yeah right like THAT'S going to happen, lets be honest) maybe before you serve others you should serve yourself breakfast.... Just a thought. But at least they could put on my tomb stone "She blew her heart out trying to help others" hahahaha.... oh come on, you have to think that's a little funny. A little? Ok moving on.....

World Changers and Me

I had the most amazing opportunity to serve for the past several days. A church we attended years ago was the host church to World Changers. Actually 370 World Changers to be exact. I helped prepare for their arrival and then I helped when they descended on the church. They came from all over the country. It was neat. Here were teens and young adults that are PAYING to work for a week helping needy people in the ommunity. They were nice and polite,  uncomplaining and courteous.The boys and the girls. I was also impressed with the leadership. The project coordinator was calm cool and in control every time I passed him.Crisis or not. His assistant was same way with smile always at the ready. And their office manager... DUDE!!!She was the quickest most efficient worker I have ever seen. For real!
  I helped with everything from mixing hash browns with my hands (washed of course) to carrying suit cases up 3 flights of stairs. I cleaned bathrooms and emptied out sanitary boxes (don't ask ....you really don't want to know) I even took a young lady and her mom to the hospital after she hurt her ankle, and a host of other tasks. It was a joy unlike anything I can explain. Serving others with no thought of anything in return was like a long drink of water to my dehydrated soul. I made friends and memories and even though I thought I was giving of myself to them, they gave me a part of them as well. What a great and awesome God we have!!! He made us to serve. Some people don't get that. They think that the only person they should serve is themselves. But when you pour yourself out and try to "out do each other in love and good works" the joy and the "high" that you get is without words. So ask God to give you an opportunity to serve the body , then roll up your sleeves and be prepared to get dirty. Literally. And when you find yourself cleaning out a sanitary box just repeat in your head "I'm a living sacrifice, this will not kill me and it was bring glory to God." My prayer is this: that God provides more serving opportunities like that. And that my children have the heart for service that I strive to have. That they undertand and live as they know that life is not about them. It's about Him and serving Him. Oh! If you see a World Changer stop them and say HI because they changed my world.

Me

Ok so I am opinionated and quick to tell people whats on my mind, and apparently Garden City Ga likes it. I've been offered an opportunity to help out the people of my wonderful city. They like my energy and spunk and are in need of a "hired gun".  A term Bobby used in putting perspective on the situation.  I'm excited to begin this new chapter. It's right up my alley. Politics, Helping others, Event planning, and Defending my city against people who would use this position for their own personal interests and the interests of a select few.  I actually have an opportunity to help make a difference in peoples lives not just now but for their whole lives. I feel like this is a answer to my personal prayer that God would use me to help people  and my heartfelt desire to get into politics. I know life is hectic right now and I know that this will only add to it but when things happen that are tough people are so quick to say God will never give you more than you can handle. So this is the promise that I will cling to. But I know that my whole life has been preparing me for this. I'm so excited.

My week and P90X

So if you've read my blog at all this week you'd know I've had a busy week. Protests, sticking my foot in my mouth and single postedly making everyone in Savannah and the surrounding areas mad at me. Publicly apologizing for said foot. Also we have dealt with a fungel diaper rash, eye appointments, doctor visits, a live rock buying experince and it's only Wednesday!!! But such is life when you are a young family. Anywho, I am really actually writing to tell you about a new found interest I have. Intense workouts. I know, you are like "what? You?" and trust me I'm just as surprised as you. Ok so it all started last week. My friend Sara invited me to this Monday night workout at her churches fellowship hall. It was free and so I said ok. Usually it me talking her into some hair brained idea (think flamingos and 1am) so I said sure why not. I got myself all jazzed up and bought a Gatoraid (which I hated because it's synthetic sweat and that grosses me out, but now I actually like it.). The trainer guy did the P90X video. I did ok but I had to pass on one set of the excersizes. I found out that I am less cordinated than I am out of shape. Nevertheless I was proud of what I did survive. I mean, what I did accomplish. The next day however I was blown away at the energy I had. Ok I was sore. I mean like I had muscles I never knew I had writing me hate mail. My calves literally threatened to go on strike. Negotiations were tough, I had no idea they had joined a union. Fortunatly I put the squeeze on them and they agreed to stay attached to my legs.  
    But the energy I had was through the roof. And this coming from an energy junkie. Caffine, diet pills and ginsing actually turn up in my blood. Just kidding. Please save the pleas to stop and think about my heart. It's a joke. But I do love me some energy. And why not? You ever tried to be a stay at home, homeschooling mom with 3 kids, 5 chickens, a dog, 1 kid who needs special attention and a hottie for a husband? Life is busy. TLC is going to call me one day.  Ok so the energy the next day even though I was sore was awesome. Now the day after that I was a little more energetic but more sore. So then this monday I go back to the class and per my request we did the Insanity DVD. Dude, I'm not going to lie. That was no joke. It was as intense as a Transporter movie. I loved it. However there was a little problem. Apparently my right knee didn't like it at all (old car wreak) and so it was a lot more painful. But the very nice trainer let me borrow the P90X DVD for the next two weeks. So this morning I pop it in at 8:30am.  The boys were amped. Keychain (6 year old) lasted 15mins. Good, but Red (7 year old) lasted 36 out of 45 mins. He's a beast. Unfortunately he's even more uncorrdinated than his mommy. But he tried and stuck with it. I'm so proud. I however was able to stick with the whole thing!!!! I am uber excited! I really like this DVD. It's really hard but it gets results. I need to find some good shoes. Apprently they're important and could be the reason my knee hurt on monday. 
       What really surprised me though was the mental aspect of it. It like trips a switch in my brain and I almost think differently now. I don't really know how to describe it except I feel.... Happier, more in control. Ok I know what you're thinking "its only been three times, it takes a while and once the newness wears off you'll quit" maybe, but I seriously like this. Maybe this is my midlife crisis. I am almost.... I can't say it. The year after 29. But maybe I'll take up this and stay 29 forever!!! Ok wishful thinking I get it, but you never know. I do know that in this really crazy, out of control time in my life, it is so nice to set aside 45mins a day to me. It's something I can control, I can do this. It's empowering. It's P90X.