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Disability Journey: through Mom’s eyes

While I was working on my autobiography about my life (still a work in progress), Mom contributed the following chapter for it; Enjoy. 
” South Louisiana knows how to eat, drink & party.  Life was pretty easy for me growing up. I did my share of partying in my teen years.  Life should be a party, but we’re not always the guest of honor. Sometimes we must take our places in the back of the room. Jamie taught me that life is not fair and we are not perfect. I felt guilty and still do sometimes that my daughter has to suffer so much, to teach me and others about important things in life. 

During Jamie’s 1st year of life, words were spoken to me by a doctor that have haunted me to this day. He told me that he could just look at her and see that she wasn’t normal. I am thankful for these words, though, because they opened my eyes. We have all been created to be different, but we are normal. What we are is what God intended us to be, therefore, it’s our normal.

Jamie has such a strong personality with the ability to win hearts, but unfortunately, trying to fit in has made her heart somewhat hard. I always wanted her to be tough. As a female, I knew she would have to be strong; being female with a disability, she needed to be extremely tough. I never wanted her dependent on anyone. She learned well, she hates to ask for help. She hasn’t learned to balance her strong personality and independence with her ability to teach people as well as she has taught me.

A lady that had a hurt back shared with me what Jamie did for her life. During the time Jamie was in swim therapy, this lady was also receiving therapy, but she was having a tough time adjusting to her injury. She was angry, in pain, and feeling sorry for herself. Then comes Jamie, this little ray of sunshine with a smile that would light up a room. It was because of Jamie’s disability she found the courage to not give up. As the saying goes, “She put on her big girl panties and told herself, if this little girl can have such strength to deal with her pain, shame on me for the self-pity.”

She had such an outgoing personality when she was young. Ronald & I brought Jamie to a wedding for a pool playing friend of his. Ronald knew the bride, groom and a few of other people. I knew the bride & groom. Jamie didn’t know anyone. She worked the room like a politician running for office, going from table to table at the reception. By the time we left, almost everyone in the room knew her name. How does society take you from the point of being a social butterfly to the state of almost wrapping yourself in a cocoon? I hope one day, I can see the self-confidence she once possessed shine through again.

Jamie started preschool at 3 years old. She still often tells her preschool teacher, she would like to go back to that time in her life. She was so happy; rarely did she complain about pain. She was in preschool for 2 years. The coordinator wanted her to stay for another year. Ronald and I decided she needed to be pushed through to kindergarten.

She adjusted well with a fantastic teacher. At the end of the school year, her teacher shared with me, how she was apprehensive to have Jamie in her class. Unsure how Jamie would handle the class setting. With tears in her eyes on that last day, she said, “It had been a tough year, the class had challenged her, but because of Jamie’s smile, she had the ability to not give up. Jamie’s disability helped carry her through the year.”

When Jamie was about 5 years old, we took a trip with my niece and her children to Texas to visit my sister. We stopped for fuel. Jamie was told to stay in the car with the others while I went inside to pay. My niece needed the restroom so she came in and Jamie followed her. Jamie asked for a snack cake, but our plan was to eat when we arrived at my sister’s house. I told her, no, but a little lady looked at me & said, “Let that child have a snack” and she bought it for her. I realized at that time, the world was going to spoil my child.

On separate occasions, years after Jamie went to Jr. High, I met up with former principles of the elementary school. Both shared with me, Jamie would give them a hug, every afternoon before leaving school. Sometimes they may have had an extremely hard day, and her hug would lift their spirit.

In Jr. High, the assistant principal would give her such a hard time. He gave Jamie the name “Jasmine” and that is what he called her every day. She would stomp her feet, saying, “My name is Jamie, not Jasmine.” He would laugh. Getting Jamie frustrated seems to be what most of her friends and family like to do.

Most people go through their entire life not knowing their purpose. Jamie’s smile so often would lift a person’s bad day when she was a child. Being an adult, she finds it a little more difficult to be happy and carefree as she was in childhood. Her pain has gotten worse, therefore, it is more difficult to smile. Sometimes she needs someone to give her that smile and hug her that she so easily gave as a child. The great job we did making her independent also makes it more difficult to ask for help from anyone; even when she needs it!

  Why do we try so hard to fit in? We are all created equal. We have different hopes, dreams, and talents. It is when we try to fit in, we are put into a box. Thinking outside of the box is what makes us truly become what we are meant to be.  Ourselves.

People often tell me what a wonderful job Ronald & I have done raising Jamie. I feel we have been blessed to have shared in her great little life. Her life hasn’t been easy, no life is. Dealing with a disability for a child is more challenging, but the rewards I’ve received, far more outweigh the challenges. Sometimes, I still feel guilty, because the struggles with her disabilities have taught me so much about life. Although I do realize, we didn’t raise her alone.”

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Happy Birthday, Dad! Youtube Video- May 2019

To My dad: For some fun times and those rare occasions when we don’t fight. You gave me my personality, blonde hair, sense of humor, and my ability to live as independently as possible; thanks for pushing me, despite having a disability.  Thanks for everything Dad. I love you.

I know I give my dad a lot of grief, but he has actually taught me some pretty cool skills. As a child, he would take me outside, and I’d watch him do wood-working things with the hammer, saw, etc. HE even let me work the saw sometimes! I practically grew up going to Lowe’s or JB Sandoz Hardware store, quite often! Another thing I remember doing often was when he’d be “on call” for work, and he’d take me with him; at his office there was this “magic dry erase board,” that would print whatever was written on it, and it could move to a different/clean board; I just was so fascinated by that board! We also went to Waffle House quite often for breakfasts and went eat at Deano’s Pizza a lot too; I still joke with mom, “We can’t go to Deano’s without Dad; that’s blasphemy!”

Another thing I remember doing with dad was the first time that he took me “crabbing”. Crabbing is where you go catch crabs, and no I don’t mean the STD; I mean, Crabs, the seafood.  We had to leave really early in the morning, so just like for Shriners trips, I would pack a bag the night before, and just change in the backseat. I remember we had ham sandwich supplies to eat lunch, and the darn seagulls were chasing me for my sandwich; finally, I just threw the sandwich and let them have it. I had so much fun, 10 years old, running on the docks to check the crab traps; getting all excited and jumping up and down, “DAD, There’re some crabs in this one!”

Another favorite memory with dad was when we’d go to go kart places; like the Kart Ranch in Lafayette. We’d ride go-karts, Dad always had me ride with him because we are both super competitive; I could trash talk the other people while he drove super-fast, making the hair blow in my face. While there, we also would do mini-golf and I always got a pink golf ball.

The funniest memory was when we were at my Aunt Sandra’s house in the country, somewhere in Texas. We went 4-wheeler riding and went fishing. I don’t mind the fishing, as long as I don’t have to touch them and they don’t flop around near me. I was scared of fish, for Pete’s sake! (What wasn’t I scared of as a kid?!)  Anyway, Dad had caught a fish, and it was on the back of the 4-wheeler and I was sitting on the 4-wheeler; the fish starts flopping closer to me, I scream! It’s funny now, but I was scared to death when it happened. Another memory was when we were riding 4-wheelers (ATV); Dad kept jumping the hills on them, and he lost his glasses in the fields after he had jumped one of the hills. I liked riding the 4wheelers: The wind in my hair, the thrill of jumping the hills; although the landing afterward, made my stomach jump into my throat!

Yes, Dad and I have a…Complicated relationship, but when we get along, it’s golden. I love him, even if he does work my nerves, and I do treasure these memories and things he’s done with me. I will never forget them because they are always in my heart, and I ask for some repeats now and again, like crabbing, which we should be going do again real soon; yay!  

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Two youtube videos dedicated to Mom on Mother’s Day-May 2019

Love you Mom, happy Mothers Day!

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Update- March 2019

I legit have the best mom, hands down. She gave up some of the time she could be doing stuff for Heather’s baby shower to calm my anxieties and took me to wound care. Good news, it’s not an infection, it’s just a little red and that is “common when healing,” and I just need to “try to keep it covered as much as possible to keep infections out.”
She then asked if I had anything to eat at my apartment, which I did, but I told her “yes, but I am so tired of leftovers.”

Her: “Well, what are you hungry for? Sonic? Burger King? McDonald’s? Taco Bell?”
Me: “Taco Bell”
Her (continues listing, which was a mistake): Chick Fil A
Me: Oh my goodness, yes! My weakness! Chick Fil A!
Her: oh my! What about your stomach?
me: I am hurting in my back which means I don’t give a flying flip about my stomach’s issues. when I hurt, I eat junk. its my comfort.

her: Okay.
(so yes, she got me Chick Fil A nugget meal).

Then we went to Target, she needed some things for Heather’s baby shower, but didn’t find anything of what she wanted.
Her: Need anything before we leave?

Me: Well, I’d like some snacks so I am not stuck eating creamy peanut butter out of the jar till my food stamps come in.

Her: Like what?
Me: Just some popcorn, a thing of chips, some real coke cola and not the no-name brand cheapo one me and David been getting at Fred’s, some fruit roll ups, and some type of cookies.

Her: okay. I’ll get that for you.

So I legit have the best Mom in the world! and a great Dad who works hard to pay for it 😛 ❤ #Blessed

anyway, I am home now, and going try to rest despite my back aching.