my life before mexico

Thankful..

noreply@blogger.com (joyboytinkertoy) — Thu, 05 Jan 2012 15:46:00 +0000

This christmas Im Thankful..I realized it today, during a mini sad moment..I was standing outside emmas class room looking at the pictures and I realized she's the disabled one in the picture every picture was in a differnt piece of equipment and I thought omg my child is disabled really..here's were I feel guilty.

growing up I lived 2 blocks from the library I lived there not always to read but crafts and such.. well when I was about 10 a class of older special needs came in. well not being the understanding, not so scared person i am today.. one of the boys took a liking to me, I didnt realize that then but he chased me all through the library yes I was scared I didnt understand why he was the way he was or why he was chasing me. fast forward to my 1st job another special needs boy blurted out I had zits and use medicine..lol.. so growing up not really being around the special needs community I was hurt.. so getting to my point..

I was looking at my lil sweet innocent angel sitting in all her equipment and said so what.. SHES FREAKING ALIVE AND THRIVING, MY GIRL IS SMART..tHE MEDICAL community and the world has deemed her as SEVERLY MENTALY RETARTED> NOPE SHE CANT TALK MAYBE THE OCCASIONAL YEA OR A JUMBLED ILOVEU.. BUT RETARED, MY GIRL CAN WATCH A SAD MOVIE CRY WHEN THE SAD PART, BE HAPPY WITH THE GOOD ONES AND SCARED DURING THE BAD TIMES.. that shows alot of inteligence.. To this day I have guilt and am still afraid I will freeze with older disabled children, but I dont! My girl has changed this whole family.

we rejoice in small miracles such as touching mommy or daddy with her ipad.. we rejoice emma falling in love with Rapunzel, I have longed for the day for her to love an object and just not beat it.. she can push a baby stroller a couple feet at a time of course with us holding her under her arms.. but shes doing it.. shes taking a liking to food recently we rejoice.. dont under estimate your child I know theres alot more she can learn and do and I will fight for it..

So my realization on my own life is that I love to help others find equipment or resourses.. so mama must save for a new computer so that I can help..I cant believe my life is like this growing up, NEVER would I have dreamed of being in these shoes but yous know what I fill them well.. yes life is hard but thinking back of all my friends, i was probably the most sensitive honestly I think this life was chosen for me.. all i want to do is get along with everyone, love and be happy..SO HERE IT IS THANK YOU GOD FOR BLESSING ME WITH MY 2 ANGLELS ON EARTH AND THE 2 IN HEAVEN. I KNOW LIFE IS LONELY, STRESSFUL,JOYFUL, HEARTBREAKING BUT I WILL TRY MY BEST TO BE THE BEST MOM AND ADVOCATE FOR MY CHILDREN .THANK YOU FOR TECHNOLOGY THAT HAS KEPT MY CHILD ALIVE FOR ALMOST FIVE YEARS, SOMETIMES i FORGET WITHOUT A FEEDING TUBE MY CHILD WOULD NOT BE ALIVE.I WILL FIGHT BEG WHAT EVER IT TAKES TO HELP MY CHILD even if i do get on my FB families nerves. THANK YOU GOD FOR LETTING MY CHILDREN BE ALIVE AND HAPPY AND HEALTHY, YES EVEN WITH A GTUBE..IM GRATEFUL IM GRATEFUL EVERYNIGHT WHEN I LAY IN BED AND CUDDLE THE PRINCESS, I THINK OF ALL MY DEAR ES, MITO, ETC FRIENDS THAT WISH FOR ONE MORE DAY.. I HAVE SO MUCH TO SAY TO YOU ALL THAT MY HEART BREAKS FOR YOU, I DONT KNOW HOW YOU GUYS DO WHAT YOU DO BUT IM THANKFUL YOUR IN MY LIFE BECAUSE I CHERISH ALL THE MOMENTS NOW.. SO KNOW THAT MY SILENCE IS JUST I DONT KNOW WHAT TO SAY.. KEEP FIGHTING FRIENDS..

SO BE GRATEFUL WEATHER IT BE YOUR NORMAL LIFE OR YOUR LIFE FILLED WITH GRIEFE WE ARE ALIVE AND WE ARE BLESSED.. I KNOW WITHOUT MY ES FAMILY I WOULD BE LOST IN THIS WORLD..

BOOOOO

noreply@blogger.com (joyboytinkertoy) — Tue, 19 Jul 2011 17:07:00 +0000

Well we had our big appointment at childrens.. im conflicted on how i really feel.. There are no words on how I feel about my lil princess.. To me she is so smart and funny... everything she does is truly a miracle.. dare I say I asked the dreaded question.. Do you think Emma is considered severe MR like her diagnosis says..Yes.. she says.. well did I cry no really I wanted to just booo her.. not my princess..
My girl is smart.. why do I have blinders on I dont know why.. She loves to read, interact with others plays ipod, goes potty.. is this really the brain of an 8 month old baby..
So a foundation has paid for emmas and mine new bike were just waiting to pay the 300 for shipping I feel so blessed to have people help us.. but at the same time feel like a forever begger.. Some people may be conflicted on weather to help emma with an ipad.. should a lil one have an ipad is for just for fun will mommy steal it..lol.. no mommy is getting a new computer the 1st week of august..
honesltly to beg for donations is in a way demeaning.. but with special needs being 3 times the cost what choice do i have but to beg and plead for help.. My child doesnt walk talk or eat.. she has so many hurdles in life.. why do we have to fight tooth an nail for everything.. will this life be all about begging for help.. I guess so..
My girl finally got a kidwalk she is crusing like nothing.. my heart has been telling me for 2 years that emma needs this.. and I was right.. so when someone like me asks for donations.. were not going shopping.. My girl is fighting for her life to walk, to eat, to learn to prosper in this life she needs help.. please donate to help emma get an ipad.. please give my girl the chance she desperatly needs..

Walk to Talk Fun Run - LoudMommy - Joy Caffrey

noreply@blogger.com (joyboytinkertoy) — Sun, 17 Jul 2011 22:20:00 +0000

Walk to Talk Fun Run - LoudMommy - Joy Caffrey

noreply@blogger.com (joyboytinkertoy) — Sun, 17 Jul 2011 21:17:00 +0000

Walk to Talk Fun Run - LoudMommy - Joy Caffrey

Fundraiser for a jogging stroller

noreply@blogger.com (joyboytinkertoy) — Fri, 18 Mar 2011 23:07:00 +0000

http://www.adaptivemall.com/emmac.html

under construction

noreply@blogger.com (joyboytinkertoy) — Fri, 11 Feb 2011 23:32:00 +0000

if your missing on my page you will be back..lol.. underconstruction.. thanks..

Pray for alayha

noreply@blogger.com (joyboytinkertoy) — Wed, 03 Nov 2010 03:12:00 +0000

Need urgent prayers tonight for baby alayha.. shes new to our emanuel family and I feel very connected to her and her mother. its amazing how one lil syndrome can bring so many families together. her mother is so young it just breaks my heart so please even if you dont know her just say a simple prayer.. you can do it baby alayha we are all praying and loving you from afar..
My second prayer is for another emanuel family.. one friend is getting ready. to fight breast cancer and has surgery soon.. please keep linda in your prayers..

love your family and hold them tight.. this world is crazy.. :(

summer update

noreply@blogger.com (joyboytinkertoy) — Wed, 18 Aug 2010 13:25:00 +0000

life has been slow this summer I had big plans to live at the pool all summer and be tan.. here I am vampire white as ever an only been to the pool 2 times.. for all that doesnt know I had breast reduction surgery this summer something ive wanted since the 9th grade.. they took almost 10pds.. I know wow..well Ive had alot of setbacks, stiches poppin open I mean wide open, staph infection..its been a fun summer.. on top of that emma had phemonia twice this summer. Nick off his meds has been nuts. . although george lopez on tv taught what an upstair outsidey is and hes very excited for the future..lol hes been on his meds for 2 weeks now and so far I dont like them he just seems so sad. im sure they will kick in and hell be back to his normal fun loving temper tantrum self..
Emma is doing really good right. Her standing is awsome but she still relies on us all the time to catch dont know how to break that bad habbit. She is getting more personality everyday. I still dont feel she will ever talk, although I dream all the time of hearing mama from her mouth.. I even day dream what her lil voice would be like..she is still getting all her therapies which can be tiring for all of us.. school is going great with her she doesnt even know i excist once we reach the class. Its almost like she throws her arms up ready for her toys and she knows nothing else. horse therapy starts next week for nic so add another day to add my schedule..fun times people..

overwhelmed

noreply@blogger.com (joyboytinkertoy) — Fri, 23 Apr 2010 02:51:00 +0000

You know somedays I handle my life really really well..somedays..most days I guess.. but this week..wow..am I over whelmed..I long for the normal life..

I am depressed..
My husband is bipolar/crazy..lol
Nick is asbergers/adhd and now being tested for an auditory processing disorder..plus he has my gene and will probably have an emanuel baby.
Emma emanuel syndrome, 1 ear, tube fed..

can we see why I'm stressed and depressed..

Today me and my big ole GENES are depressing me..I love my children more than life and sometimes it really bothers that my genes have done a number..I dont regret having them but today I want more for them.. I want them to be normal..

So today..I dream of mexico..no drs and specialist..daily just one normal freakin day..

pics

noreply@blogger.com (joyboytinkertoy) — Thu, 01 Apr 2010 23:10:00 +0000

just an update

noreply@blogger.com (joyboytinkertoy) — Thu, 01 Apr 2010 22:46:00 +0000

So many changes for emmster this coming month.. we are transitioning to the real school.. emma will start on monday.. i'm happy but terrified..I know in my heart its what best for her.. I jsut hope they feed her right and put her on the potty..lol.. emma is loosing her therapist..shes moving on to bigger and better things..Its really tearing me up because she has become my friend in alot of ways, plus she was a kick ass therapist..

So new things with emma.... she got dafo's they are feet braces.. she got this suit called theratogs..which work great..BUT..have quit..its like putting on tree lights that are tangeled 10 times aday..so I quit.. emma is pinching and pulling hair and she throws a pretty awsome temper tantrum..she fully thows herself backwards..so its kind of good because it is considered milestones.. emma has discovered her tongue and she loves to stick it out.. she even likes to lick people..lol.. gross I know.. but at the same time its hilarious when she continuely licks you none stop.. shes just a charecter..she has 1 million facial expressions.. I wish I knew what they all meaned..

so here are some pics from her last day at her preschool for early intervention.. these ladies are great.. and the best thing is they all love my princess.. especially her clothes..lol..oops couldnt get the pics to download will do later..

Dear God..

noreply@blogger.com (joyboytinkertoy) — Thu, 25 Feb 2010 21:41:00 +0000

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

noreply@blogger.com (joyboytinkertoy) — Sun, 27 Dec 2009 21:15:00 +0000

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

noreply@blogger.com (joyboytinkertoy) — Sun, 27 Dec 2009 07:41:00 +0000

Make photo slide shows at www.OneTrueMedia.com

noreply@blogger.com (joyboytinkertoy) — Sun, 13 Dec 2009 05:25:00 +0000

Make your own Countdown Clocks

having a special child.

noreply@blogger.com (joyboytinkertoy) — Tue, 03 Nov 2009 05:43:00 +0000

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

noreply@blogger.com (joyboytinkertoy) — Tue, 03 Nov 2009 05:18:00 +0000

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..

noreply@blogger.com (joyboytinkertoy) — Wed, 28 Oct 2009 06:12:00 +0000

Make your own Countdown Clocks

emanuel syndrome sucks..

noreply@blogger.com (joyboytinkertoy) — Wed, 30 Sep 2009 22:31:00 +0000

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

noreply@blogger.com (joyboytinkertoy) — Fri, 21 Aug 2009 02:32:00 +0000

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

noreply@blogger.com (joyboytinkertoy) — Fri, 07 Aug 2009 04:32:00 +0000

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..

nicks genetics are back...

noreply@blogger.com (joyboytinkertoy) — Mon, 27 Jul 2009 19:08:00 +0000

Well I got nicks genetics test back and all is well with most of it.. but unfortunatly he does have a balanced translocation like me.. Can I just say I am so sad. I always dreamed of having kids, doing the normal adolesant things that they do, girlfriends boyfriends heartbreaks. now I may not even get grandchildren. I feel like a bad egg.. Why did this happen to me.. Dont get me wrong I LOVE MY KIDS MORE THAN MY LIFE.. but couldnt this have just skipped him. why can he just have a happy normal life. You know we dont have family not really everyone lives away. So one fear we have is who will take care of our children, especially emma will this fall to nick if he is old enough, now will nick have children or children like emma..doesnt he have enough to worry about than to have this now..so my moto for the day...BLA BLA BLA....PS SORRY FOR THE CUS WORDS BUT i NEEDED IT..

the meaning of emanuel

noreply@blogger.com (joyboytinkertoy) — Sat, 25 Jul 2009 20:02:00 +0000

I thought this was neat..because as you all know emma has emanuel syndrome.

E•man•u•el

Pronunciation: (i-man'yOO-ul), [key]
—n.
a male given name: from a Hebrew word meaning “God is with us.”

I love the meaning of names.

Emma means whole, universal.

So heres my point of view. emma who has lots of problems, maybe because she is a lil broken, maybe..since god is with us, she is whole..this is emma..she is supposed be.. did that make sence.. emma also is a form of emanuelle. I think that is neat since i had no clue she had emanuel syndrome.. Its like a lil circle.. ok.. yea I have my crazy brain on today..

emma's new swing

noreply@blogger.com (joyboytinkertoy) — Sat, 11 Jul 2009 01:03:00 +0000

PS CAME BACK TO UPDATE BEEN 3 DAYS AND SHE STILL LOVES IT THIS THING IS AMAZING

IF YOU HAVE A SPECIAL NEEDS CHILD HECK JUST A BABY.. THIS PRODUCT IS AWSOME..
NEVER HAS EMMA LIKED TUMMY TIME UNTIL NOW..ITS CALLED A WINGBO.. IT IS PRICEY..200.00 but if you say your from melissa's group on special child exchange you can get 10.00 off. from the second I put her in it she was happy.. I have to say I did cry a lil..I never thought she would do tummy time.. that has to come before walking.. i think the website is winbousa.com.. so get one people..

bound by chains

noreply@blogger.com (joyboytinkertoy) — Thu, 02 Jul 2009 02:28:00 +0000

New Graphics

So this post is kind of in reference to so you think you can dance..They did a dance tonight that reminds me of my life. the couple was chained together with a chain. GOOD GOD.. this week I feel I have 3 attached to me. I seriously need a break, a breather alone time and not in the middle of the night..
I LOVE LOVE MY FAMILY. but good golley they are clingey.. alot of people have family an friends around. its mainly us 4. we are bound, by love, stress. I live for them.. but I really just need a break..emma loves so you think you can dance.. If I hold her up she will dance like a crazy women its so cute.. I would get it on video but mommy so is not gonna be in it..I think this week i'm gonna take a break from everything. Im just not feeling well..My back hurts,my head I keep getting dizzy spells and IM REALLY FREAKIN STRESSED. So now I will go back to my lovely chained life..and hope the stress will go away soon.. maybe being lazy this week will do me some good. who knows maybe a miracle will happen and my hubby will let me go to the movies by myself..ha ha...seriously people if I'm gone for 1 hour..the world as they know has come to an end..

Get more Graphics and Twitter Backgrounds