Dear God..

Today emma has a horrible cold or what ever it is..she is puking and coughing like crazy. Tube feeds are coming like crazy and sometimes I feel overwhelmed and alone. But having a special child has opened my eyes to all the sick children out there. I have so much respect for people that have unwavering faith in god. Because today I'm just confused why he does what he does.. Reading blogs from all over the US, I just dont know why. why do lil ones get cancer or mito or battens or all the other horrible things that take these lil angels from us. It breaks my heart everytime, my husband doesnt understand why I would read all these stories sometimes I wonder why too. But I have some type of conection with all these families.. I would take tube feeds, puke, diarea any day over any of all these.. emanuel syndrome is nothing compared to the other options.. please love your children and remember life could be worse.

heres a couple kids that need prayers..
http://laylagrace.org/
http://65redroses.livejournal.com/
http://momentswithmoriah.blogspot.com/

hearing

Well we have had a fairly good christmas. Emma got her hearing aide! I had no idea how bad she was hearing until I say her face light up with her hearing aide. The best way I can describe it is to say it was like and is like watching an autistic child wake up. everything has been exciting for her and for me to watch. Dont run out of meds when your child gets a miracle..lol I have been a mess.. nicks insurance got cut off so he is out of meds till the 1st of the year so its been fun with him too. he had good christmas with getting a wii. its holiday time that we realize how alone we really are. In south carolina we always ate with neighbors. we are happy just being us but sometimes it gets to be to much. like right now nick is laying in the floor crying I hate my life. How many times must a child jump from bed to bed and fall before he stops. maybe when something is broken. he doesnt cry like a normal 9 year old. his autism or what ever it is is getting on my nerves. this boy will not wear clothes. whats that boy on snl thats in his undies all the time..stewey? It can be overwhelming at times and i'm tired of begging for clothes.
I'm trying to pick out schools for emma my choice is between 2. I have to figure out full or part day. Im so conflicted. no one has ever taken care of emma. will she handle being away that long will they feed her right. I know that I need the break. I have lots of excersise planned when she goes. but its all very stressfull. well. I will keep you all posted on her hearing and all. its a true miracle..an expensive one..thanks insurance..lol..happy holidays to you all. if you have not seen the video of emma hearing yet. the link is right below..

My Montage 12/26/09 at OneTrueMedia.com

Make photo slide shows at www.OneTrueMedia.com

Make your own Countdown Clocks

having a special child.

you know one thing I hate to hear is bless your heart or i'm so sorry..when i tell them what goes on with emma..it just erks me..kids on the other hand have been awsome. they are starting to notice her ear now.. so it makes for unusual conversations..like where did her ear go..I just told her god kept and shell get a new one in a couple years. then another lil boys came up and said aaaaaaaaa look at her lil ear its so cute.. can i hold her..I didnt let him hold her..but it was so sweet..I just wish adults would ask questions instead of staring..im gonna find a bib for emma takes a pic it last longer. or do you think your stares will cure me..

Life

So first off I lost my super women cape..I have been a sack think I need to go back to zoloft..or I hate driving or something. take nic to school then go 20 minutes to another town and either drop her off and come back 2 hours later or do therapies this is 4 days a week. plus nick was doing horse therapy for a month. which he really enjoyed thought he was the king..of riding.. he has been a handful.. I forgot to get his meds appt on thurs. so fri they dont do those appts so we were with out meds for like 5 days it was HORRIBLE..it was like watching someone come down off happy pills or something.. I really thought he lost his mind one morning we were at the car place getting my car fixed.. he was nuts.. came out of the bathroom with what appeared to be his tshirt and under wear.. I really went into a life before my eyes kind of moment..then quickly what the heck r thinking nick put your freakin pants on..he had his pants pulled all the way up so i couldnt see them..so my life has been fun..it was emmbarrasing and hillarious.
growing up I always thought when i have kids they are going to mind me, when I have kids i will loose all the weight..hmmm guess life is showing me know..
emma is doing great..still really no talking just her usuall yea..I wait for it but it doesnt come. I find it ironic that my favorite books of all time was hellen keller i read them all the time.. now i have a child like her in ways..
so we are getting ready to set up and plan for next year..school for emma.. I have to choose between two schools one with more money and a title or one with a very small class and a great teacher.. its going to be so hard to go to 2 schools. its going to be so hard to turn my life over to someone else. the what ifs will they feed her properly will they put her on the toilet..i'm gonna freak out when the time comes... shes not been doing so well in her walker she jsut wants to sit in it. if she wants to walk she wants you to be holding under her arms..princess..we had fun at halloween loved the pics of the kids..actually got to be a family day for us.. well emma has ear tube surgery on wed and an abr hearing test while shes sleepin. so pray it goes ok..

Make your own Countdown Clocks

emanuel syndrome sucks..

emma got her report where the do the what age she acts like in this and that.. She was basically from 6 months to 9 months. she did have a 1 month it was in communication. I wish she could just talk to me..I miss baby babble..although Nick does make up for her in the speech dept.. lol..i'm pretty ok with her disablilty. I dont grieve it to much when I see other lil girls its like i'm numb to it. but theres times I do get sad. other than that she is loving school..she has a lil girlfriend at school who is disabled also, they always pair them together they both dont talk but will smile at each other.. they have a rice box full of rice they always play intogether..well anyways.. her mom bought emma a lil neckalce. its a best friend necklace and they each were one. I thought it was just the sweetest thing ever to do. If she would have caught me on the right day I totally would have cried.. So on my behalf. my social anxiety seems to be getting worse. dont know whats that all about. I have alot to say but some how it only comes out in my head and I just am silenced. I know it must seem awkward, hopefully people jsut think im shy not rude..

Nick is doing good he has started horse therapy. of course he loves and thinks hes the best rider in the world..plus he's getting a lil conceited its really hillarious. he got a hair cut yesterday and picked a celebrities and now he thinks he looks like the guy..funny..other than that not much..still dreaming of an extreme home makeover..lol..and an alone vacation..

our vacation

Thank you to camp new hope for giving us a great vacation something we could not have afforded with out your help. you are awsome.





So are vacation was so awsome.. I cant wait till the year is up to do it again. The boys tubed down the river over and over they fished, we got to swim in the river, thats really the only hing i got to do . I could have done more but I feel I play with emma best when it comes to the both of us. not to mean to him he is a great dad. but I just am more fun for her and I figured nick wanted daddy anyways. We got to drive a bob cat everywhere which was fun emma loved the that. My favorite part was the 5 bedroom 3 bath house. No toys everywhere, equiptment.. we live in a 2 bedroom duplex, so we are lacking on the room. so now my dream of being a homeowner is even worse now. so now we have to really file bankruptsy. It was great to see my family even if I am a cow..I didnt want to go home being so big but its life I guess..

emma is still doing really well with her swim therapy its so cute..shes got so much personality for such a quite child. and shes gonna have to join tvs anonomouse{how ever you spell that} she has really regressed alot on eating but with her feeding therapy is actually trialing peanut butter..which is great but i cant bring myself to try it. it just seems dangerous. Her chair got approved just waiting for it to come i'm very excited shes never had anything new. shes a second hand gal. weve realized lately that she loves her bed..she will not fall asleep almost at all now. but you put her in her bed and she rolls right over grabs her bars and passes out its the cutest thing ever..so next i'm gonna try for a new bed again. of course after we fight the potty chair..fight fight bla..

ps my friend michelle is still fighting her health issues, shes has yet to be taken care of properly by a doct, with her cancer. she was getting ready to have a hysterectomy and now shes pregnant with twins, but one them have passed on. so if you could pray for her. she is in a really tough spot. pray for healing and strength.. I love you michelle ..i'm so sorry all this is happening to you. I wish I could be there for you..

going out of town..woohoo

well im kind of excited to be going out of town.. not so excited about the 7 hour drive to get there. we are going to nc,wv and va..ow thats alot of traveling.. we are getting a totally free vacation. These 2 brothers have a big ole cabin on the lake an let people with special needs kids stay there totally free THEY EVEN BUY YOUR FOOD.. how awsome is that..even more awsome for me is they cook one meal a day for you..WHAT jj does not cook so we have to go out to eat..so im excited..

its a 5 bedroom cabin on the lake it is fat people, fishing, swimming, deer, bobcats what no thanks on that one.. but we will have fun.. it has been 2 years and 4 months since ive seen my parents. and about 3 since weve seen all the families..so were happy..im not to happy about going home big as a house..but owell shit happens..

so say a prayer for us for safe travels..for emma not to get sick like i think she is starting to..and pray we do not here are we there yet 1 million times..lol.. so dont miss me too much..if there is someone out there that reads this..later.. did i mention its for almost a week..haaaaahaaa attached are some pics of were we going so beatiful..