My Life…

When I was 10 years old I was diagnosed with a rare progressive Nuer muscular disease called Friedrich’s ataxia called FA for short. The past 7 years has been nothing but a journey a long hard heartbreaking at times but I wouldn’t for one second wish the Lord hadn’t put me on the path I’m on! I wondered often why me why not somebody else that isn’t living for you Lord and every time I was reminded of the blessings the Lord has done in my life. the people He’s put in front of me, the encouragement, the overwhelming Love people show towards me, the wonderful memories I have, the family that surrounds me. I wouldn’t trade it for anything! Yes I’m in a wheelchair but it’s temporary, yes I have a critical heart but it’s temporary, no I can’t stand without falling but it’s temporary, Everything in this world is temporary. But my Love and Strength in The Lord isn’t 

A month ago or so I was in the hospital cause I was having problems with my heart. And on the third day I was there after having tests done. I can’t really explain what’s wrong but the doctor started talking and I was listening until I had heard him say my life might not be as long as we’d hoped…. and at that moment I could not hear anything else he was saying I just looked around at the family and friends that were there and started thinking about the ones that weren’t there and my heart shadred I screamed and cried with my family. I had no fear at what he just had said but yet was sad at th thought I would not be able to be at my sister wedding or the birth of a niece or my little brothers 18th birthday sad I would be not able to see what the future holds with my lil siblings. I know everything in my life is in the Lords hands and I’m grateful my Jesus has taken the wheel in my life!


March!!!! ūüíõūüíö

I am so excited for march to start its gonna be a busy month but a great month!!! we have 2 archery competitions and we have soccer practice every monday tuesday and thursday and co-op every friday ( co-op is something all of the home schoolers do we do computer class writing class science class an biology ) And we still have school all through the week……… And we have just 2 regular archery practice.¬†On march 17¬†my friends the vandurbergs the napps and the waggners are putting on a poker run to help raise money for the bike ride they put one on every year and the money goes towards the friedreichs ataxia research alliance to help find a cure for friedreichs ataxia ūüôā and¬†on march 23¬†me and my friends will ride our ¬†bikes in the ride ataxia i am so looking forward to it. ūüôā I


my day :)

Today¬†I woke up my hair was horrible¬†I repeat horrible!!! It was oily any way so¬†I took a shower washed my gross hair and got dressed. Ate frosted flake’s and we have a bible study every¬†morning we have been studying in proverbs this morning we studied¬†in proverbs 19: 1. And then I did school and I cant wait til tonight i am staying the night with my aunt Lisa! ūüôā

¬† ¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬†¬† look¬†I have awesome sun glasses!!! lol they r naya’s


My Scoli surgery…

Ok so i know i have not written a blog lately but here is what has happened.
Many of you know that i have a rare disease called Friedreich's Ataxia that is a
neuromuscular disease which means that its only going to get worse. It affects
my balance and i have....well....had scoliosis and i also have a heart disease
called hypotrophic  cardiomyopathy.
The scoliosis made me lean to one side and because i had a very bad curve it was
a 64 degree curve they said i needed spinal fusion surgery. I have tried to
avoid it for so¬† long and i couldn’t avoid it any longer.¬† They scheduled it for
july 31  2010 but i would have to go in on july 30 to get settled in and then i
would have to go in to surgery @ 8:00 AM  on july31.
First they put iv’s in me about 5:30 am, then they gave me medicine to go¬† to
sleep and then i would not go to sleep so they  gave me a stronger medicine. My
parents prayed for me and i fell asleep right after that. They took me back and
when they put me on the operating table¬† i woke up and said ya’ll said i was
going to be asleep! why am i not asleep! They said to lay down and close my
eye’s so i did and i fell asleep.
The doctors took 2 metal rods and 13 screws and straightened my spine. They
placed 1 on each side of my spine and an then screwed them together and a’ll i
remember is waking up and it being so dark and screaming where’s my where’s my
mom??? I remember hearing a voice saying i am right here you are ok and the
first thing i noticed was that i could breath a lot better.
On the 2nd  day i had to get up and sit in a big chair and then on about the 5
day i got up and walked with a walker. In the hospital i had so much fun with my
siblings we played the wii together. 4 people playing the wii you can imagine
how that went LOL…….. and playing basketball. ok i beat the most athletic
person in our family Naomi and she plays basketball!! lol of course it was the
one where you stand in 1 spot and throw the basketball’s into a hoop. I also¬†
had a therapist named Hun she was very nice.
I left the hospital 12 days later and i came home walking with a walker Amanda
Dreama and Mike all came to the hospital to help us bring our stuff home because
I had so much stuff and then they came to the house and visited for a while.
Dreama and mike left and Amanda stayed. Then Luke and Katelynn came over and
stayed and Gina Trace and Faith and Grace Emory came. and visited and i got to
hold Emory she is so precious. And then everybody left they dropped mana off @ 
That Monday I went to Physical Therapy to get Evaluated so i could start doing
PT. Well i went to PT¬† on Tuesday and thee fun began for you that don’t know i
like to be sarcastic with Aaron which is my therapist he is so fun!! We do all
these laying down exercise’s an then we do the total gym and the nu step and the
pulley’s and throwing a big ball over my head. I have¬† to go to Physical Therapy
every singe day @ 2:00 and oh if your reading this Aaron John is still my
favorite therapist LOL.!.! And today i am walking without a walker ūüôā¬†
I’ll write about the rest of my time home in the next post…..

friday and sunday!!

Okay so friday was a party benefit for my family to raise money for my spinal fusion surgery scheduled for¬†July 31¬†i am ready to get it over with but i am not looking forward to it. So anyway at the party on Friday at floors 4 U they did a raffle. they raffled off a area rug and a blender and coupon for one Free year at complete fitness and ¬†iPad 3. Okay so I was drawing the name for the winner’s. Okay so i was drawing the first one the the name for the winner for the blender and guess who’s name i drew NOAH NEWMAN in case ya’ll don’t know he is my brother and then I drew the name for the coupon to complete fitness guess who’s ¬†name i drawled this time NATHAN NEWMAN LOL……. he is my little brother so Noah has a blender and Nathan has a coupon for complete fitness. and then I drew for the area rug and i drew ¬†someone that I don’t know so ya. And I drew for the iPad 3 and guess who got that i drew Britney Sanford and she announced¬†that she had already told Abdel that if she ¬†won the iPad 3 she would give it to guess who if you guess me Natalie Newman you are right I was so excited she gave me the iPad 3 that she won oh and by the way the food there was amazing. And then¬†on Sunday at 5:30 PM¬†we went to my Nana church and they had another party to help raise money for my surgery¬†on July 31¬†it was so fun there was a lot of people there and they had a jump house 2 water slides and a dunking booth and diffrent kinds of games and there was a boy there that walked up and gave me all his birthday money it was like $250 his name was covy and he was 12 years old he was so sweet and i had to give a short speech and we ate hot dogs and my awesome cousin DJ sang Christian rap you should look him up on itunes search true disciple transformation and then the pastor preached for about 5 min and then brother steve announced that they raised $2,500 it was amazing and a huge blessing it was fun to well i guess ill talk to you later bye!!


An awesome day!

WOW!! Today was an awesome¬†day!! First well last night¬†I went house sitting with my aunt Delores and we stayed the night there with my aunt Delores. And this morning me and my aunt went and had breakfast and I¬†got hash browns a omelet, a piece of bacon and toast. My aunt had 2 pancakes and bacon :). Then¬†I went to miss Genie’s house and we tried¬†to crack the recipe for spice tea at the tea room. We got pretty¬†close but we didn’t¬†crack it. ūüė¶ all well we will keep trying to crack it LOL………. Then we went to the tea room and¬†ate lunch. ¬†yummy yum!! It was so good!! Thank u Genie and then we went and got some beads from the bead shop ūüôā to make a necklace. ¬†I¬†made and it is so cute! It’s a purple one I love it. Then Naomi¬†and Mom went to soccer practice and I stayed here with Nathan and¬†Naya¬†and¬† we watched Jeremy¬†Fink. It’s good. They got home and we ate dinner and watching¬†a movie right now so I got to go!!

Bye thanks for reading my blog comment if u have time