In the End, we will remember not the words of our enemies, but the silence of our friends. - Martin Luther King, Jr. at BrainyQuote Mobile

In the End, we will remember not the words of our enemies, but the silence of our friends. - Martin Luther King, Jr. at BrainyQuote Mobile

What life is like now in 2014

Well its been a couple years since I've blogged. let me start by updating you on emma and how she has been these past couple yrs. She has a few new conditions. Eplilepsy which scares the bejusus out of us. Encopresis its a fear of using the bathroom. This fear comes from her having a rough go with CDIFF. It was a horrible time. Her sensory processing disorder has gotten really bad this yr. We need so many trips to Vanderbilt but cant afford them. I write to the ellen show daily in hopes of a handicap van. My husband was blessed with a good job. But for people who have been behind a year its extremely difficult for us. I would love to talk about my son but he is 13 now and deserves his privacy.. My little boy is young man now. he's 6'1 and 180lbs. Man does he make me feel old. I wish he knew how much we love him.. So we just got back from Emma's make a wish trip. I would like to thank Middle tn make a wish for making my dream for my girl come true. This trip was amazing. We saw and experienced things we've never got to do before being a family on tight budget. Emma's favorite thing was just to sit by the pool at night and watch cartoons on the big screen. She finally got Woody and Jesse from toy story and really loves them. Emma got to feel the ocean for the first time, ride a huge ship like they do in her cartoons. It was nice not to worry about groceries for the week etc. We feel blessed to have to gone on this beautiful trip. So now the ugly. I haven't really spoke about our vacation. I dreamed of a magical time for us all. But when your family is filled with mental illness's and disabilities not all of your dreams can come true. It seems the whole family was misplaced with being so far from home and our comfort. Emma slept a lot on the trip because her absent seizures are picking up, so there was a lot we didn't get to do with her that I have dreamed for over a yr. which broke my heart a little. Seeing your child on trip like this isn't easy, we didn't win a vacation we got it because we don't know how long we have with our girl. There's no time table on Emanuel syndrome. Honestly I feel quite ashamed that I wish we could do it over. Maybe worn ourselves its not going to be a miraculous beautiful occasion. To make the best of it because it may not ever happen again. Well update on me time.. this has been the worst yr yet on my depression. I don't know why it's spiraling out of control. maybe lack of sleep emma sleeps 3 hours at time. Maybe its not feeling worthy that I cant work and provide for my family. Before children I had a lot of jobs. I liked working. Now my time is spent taking care of my disabled child, she miss's a lot of school and we have no help so we compromise. on everything. I think I write to ellen so much because if I did get that van it would be me contributing in a way. I shouldn't feel ashamed for being a stay at home nurse mom but I do. I don't know how to help us when we get in trouble. like now. we are way behind on rent and all utilities have shut off notices. with no local help. This is when the depression and crying gets the worst. Sure I can get a nurse for my child and work at mcdonalds but why? I can move to several states who would pay me to take care of emma instead of a stranger.. but life isn't that fair. I don't know how to help myself or my family. This year I just want my kids to be healthy and happy and us get out of debt. please god help me with all our problems. and Thank you for blessing me with a beautiful family.

Joy Caffrey | Mobility Awareness Month - Vote For Me!

Joy Caffrey | Mobility Awareness Month - Vote For Me!
PLEASE VOTE FOR US AND SHARE THIS WOULD CHANGE OUR LIVES AND RELIEVE SO MUCH STRESS PLEASE ENTER CODE 823 THAT GIVES US 5 EXTRA VOTES;; IF YOU CAN FIND IT IN YOUR HEARTS PLEASE RALLY FOR US WITH YOUR FRIENDS FAMILY PLEASE.

Thankful..

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

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

Walk to Talk Fun Run - LoudMommy - Joy Caffrey

Walk to Talk Fun Run - LoudMommy - Joy Caffrey

Walk to Talk Fun Run - LoudMommy - Joy Caffrey

Fundraiser for a jogging stroller

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

under construction

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

Pray for alayha

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

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

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

just an update

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..

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..