Category: parent

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I’m Backkk!!!!

jamiesjourney0591

Hey Everyone, Sorry for the “hiatus”. Things got chaotic but in a good way for the most part.

In March 2023, I returned to Baylor in Houston and got the results of my bloodwork – My “Chromosome Microdeletion” is on the Chromosome(s) 15.21.1-15.21.2 (its rather small) and very rare. There is no other deletion exactly like mine; there are some that are similar, but I am a medical anomaly (as if I didn’t know that already LMAO!)

Somewhat Sadly, In July 2023, My (now ex) fiance of 5 years and I broke up. There were many issues and TBH I think I mostly stuck around because I adored his family. I was sad about our relationship ending at first, but shortly after, his true colors of his personality showed up, but I am not going to air his dirty laundry on here- all I am going to say is what he did after we broke up (Despite trying to stay friends, I had to eventually cut him off for my mental health well being), but, he “shot himself in the foot” of any chances of us getting back together. I am happy to say however that his family still keeps in contact with me and his sister even still lets me see her kids who still refer to me as “aunt Jamie”.

In Other News, Around April of 2023 I got the vision of doing a “podcast” (Sugar Spice and Everything Nice- St Landry Parish) of Promoting Opelousas/St Landry Parish- events, hidden gems of stores/restaurants/etc, good news, etc. as all that makes the news is “bad news” and I don’t agree with that- why only see the bad when theres so much good also? (That’s another thing about my Ex: when I told him about him, he didn’t support it “Why you wanna do that? There barely is anything ever good that happens around here? It wont change anything,” meanwhile I always tried to support every idea he had, But, whatever.)

Shortly after I started my “podcast”, Parish President Jessie Bellard had reached out to me to attend a meeting of a board to help “Push/Promote St Landry Parish.” Shortly after that happened, Guns Down Power Up Founder Eric Williams reached out and asked if I’d be interested in becoming the new Vice President on the organization Board (I made a year as VP in July 2024). Finally, by going out to these events and networking with the community, I am meeting pillars and leaders in the community- other organizations, etc – that could help guide me towards accomplishing some of my biggest passions and dreams that I have had for a long time!

Finally, Guns Down Power Up, thanks to Superintendent Milton Batiste and Marshal Paul Mouton, got some classrooms at the old North Elementary school campus and we were able to do our first ever SUMMER CAMP, which was an amazing success, and I can already see it getting bigger and better with time. #TeamWorkMakestheDreamWork

While yes, my pain is unbearable sometimes and there are days it’s very hard and I just want to “give up,” All the blessings I see in my life, I can’t wait to see what other exciting things await. Now if only my body pains would go back to what they were in 2013-2017, and I’d be on cloud 9, but we can’t have it all.
I will just take one day at a time, that is all any of us can do.

God Bless Everyone!!! ❤

-Jamie

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Planning a Q and A video…with mom….Need questions!

jamiesjourney0591

I am planning on doing a Q and A type video with mom for my youtube channel sometime this week. Is there anything yall would like to know?

Any questions about raising a child with disabilities?

Any questions about what I was like as a child?

Any questions about me in general?

Her thoughts/ feelings/opinions about raising a child with disabilities?

Her thoughts/feelings/opinions about society now a days? 

Anything…There are no Dumb questions.

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disability journey: Broken rods – facing my parents and such…

jamiesjourney0591

 As we are aware, I had re-broke my spinal fusion rods and was dreading facing my parents about it. This weekend, my parents came in off the truck. As soon as they saw me, Dad asked “what happened to your forehead” because that was the first thing he noticed. “Well, you see, there was a incident in the backyard on the steps. I fell…and re-broke my rods.” They didn’t look happy, but didn’t say anything, later they mellowed out and we joked about it. Then I gave them some candy bars I had bought at the store on Thursday after the incident, before they came in, with the joke to David, “I’ll get their favorite candy bars so when I deliver the bad news about my rods, it will be less of a blow…Like…’look, I got yall favorite candy, oh by the way, my rods are re-broke. Oh just eat your candy bars before you reply.” hahaha. To which I recounted that story to them and they laughed. I am so lucky to have understanding and supportive parents with good senses of humor. 🙂 #Blessed. 

I also sent the Xrays to Dr. Kelly on friday through “snail mail” with post office saying it should be delivered/recieved on monday. So I will call monday to tell his office and hopefully by tuesday or wed, I will have some news on what Dr. Kelly had to say. I also hope I hear from the genetics doctor soon as well. 

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Disability Journey: through Mom’s eyes

jamiesjourney0591

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.”