Category: Relationship

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Fortitude and what it means in my life

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over the last couple of years,
I use the word fortitude a lot. I will tell yall why:

Back in 2017 I had subbed for my mom’s CCD class and they were learning about the virtues and the one for that week was fortitude- doing it in fear. It was my first time doing the CCD class by myself so I was nervous- nervous the kids would try to take advantage or not-take me seriously. Which it went fine.

The next day– I had been on an online dating site and got a message from someone who would now be my fiance. asking to go on a date. Again, I was nervous and scared. But again Mom reminded me of the virtue of fortitude -doing it in fear. (and yes we did go on a date, public – La Hacienda.)

So now anytime I do something outside my comfort zone and I’m nervous as heck–what word rings in my mind. Fortitude. And if it doesn’t on its own, Mom is right there to remind me of the word.

The latest thing I have had to do with fortitude is I started public speaking. Now don’t get me wrong, there have been times I have had to public speak before learning about fortitude. Even though I was nervous about it, opportunities continually pop up as if it is like God saying “HELLO THIS IS WHAT I WANT YOU TO DO.”

In the past, before learning about fortitude, I would still do the things but I didn’t know what “doing it in fear and nervous” was as far as virtues, and after the events I did, I never pursued or looked at public speaking as a career, further.


The first time I ever did any type of public speaking was in college for my Communications class- I made C’s because of nerves and read off my cards too much.

The next time was when I was asked to do what’s called “familiarity visits” with patients coming into Shriners for Halo traction- while I was in halo traction. Familiarity visits are telling the incoming patient what to expect: pain-wise, the routine during the week, how to do “pin care,” etc. That was easy because it was just like chit-chatting with peers; was I still nervous? yes! I worried I’d forget something important to mention or something, but still, I did it.

Another public speaking opportunity while in Shriners hospital during the time I was in halo traction was when the Respiratory Department Director asked the different patients to come to say a few words at the conference about how Shriners Hospital, the Halo traction, and especially the respiratory department affected us and helped us. I was nervous and with no filter, I told everyone there about my first weeks in traction and how I compared the respiratory department director to “Hitler of Respiratory” and the consequences once word had gotten back to her about me saying that! I had the entire room in giggle fits. The director and I may have had a rough start, but now we are best buds, and it’s our inside joke now.

In 2013, one summer while my godson was down from Texas, I happened to be wearing a tank top and he saw my scar sticking out from under my straps; he then proceeded to play “20 million questions” and I answered most of them until I got tired of answering and said “okay, that’s enough. go play, you’re giving nanny a headache!”

In 2015, one of my cousins at 4 years old noticed my spine sticking out during family Christmas eve and he was sitting behind me. I feel him feeling at my spine that was sticking out (The hump) and then suddenly feel him starting to punch it. His mom freaks out “_ Don’t hit jamie!” to which baby boy replied tearfully “I’m trying to push her back back in!” So that Christmas, he got the gift of learning about Scoliosis and why “cousin Jamie’s back sticks out.”

Also in 2015, I “tested the waters” of my comfort zone when LSU-Eunice hosted a talent show, where I read an original poem titled “Don’t judge by disabilities” and got a standing ovation as well as many compliments in the halls the following week. I was so proud that I had conquered my stage fright and even placed 3rd, which I don’t blame them poetry is nice, but music always wins!

Years passed and in 2021, I was a guest blogger on someone I only know online @Ami Ireland who has a blog “Undercover Superheroes” and talked about my disabilities there and it was posted in May 2021.

Now we are in 2022, and more opportunities have popped up without even really trying to get them. In March, I went to a church function and the CCD director’s granddaughter who I taught in kindergarten for VBS had finally noticed my back and how I was shorter than many adults, and she asked questions, so I explained as best I could at a 2nd-grade level and showed her pictures, she was shocked and just hugged me “Miss Jamie I had no idea. I remember you were always smiling for VBS and you spoiled our class!”

Next came when I was talking with Guns down Power up founder and director, Eric Williams. He had mentioned he was in special ed and had mental problems or something and I messaged asking if he minded talking about what disabilities/ why he was in sp-ed. I told him I had physical disabilities, and thus he asked if I minded coming to talk about my disabilities at his program. Which will take place on May 28, 2022, at Opelousas Police Department from 11 a.m.- 3 p.m.

From there, I was just talking to another program founder, the founder of BullyBox A passion Project to combat bullying in schools and such, Ms. Shauna Sias and she asked me to go on her and her co-host Nina Irving Williams Podcast/Live TV Livestream thing on Weds nights (Which Mine was April 13- I attached my segment of the show on my Youtube.)

So God keeps giving me Opportunities and in the past, it was just “one and done” but lately they have been more frequent, so maybe it’s time to come out of the shadows and do this more. These opportunities could open more doors as I have lots of passions and ideas but don’t know who to talk to or how to implement them. Who knows what God has in store around the corner for me?

God is good all the time. Sometimes we got to practice fortitude- doing it in fear!

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

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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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Life in Slideshows

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I made more slideshows about my life in pictures. I added all my slideshows to a playlist on my youtube. 

Link to playlist: My Life Slideshows – YouTube

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Disability update- Scoliosis Update: St Louis check up appointment

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 On September 22, 2020, I had my appointment with Dr. M Kelly at CAM Center in St Louis, Missouri. He didn’t seem too worried about the broken rod at this time. the rod is broke but it’s still got some support from other rods and such, we not doing anything at this time (if rod gets worse or something, then we’ll see our options. Not really wanting to go back in at this time because the wound I had previously s finally behaved and “quiet.” So he’s like “let the sleeping dog lie,” to which I translated “don’t poke the bear” and he agreed.The “rod pain.” Is not rod bc the broken rod is on other side of my back, but it’s probably “muscles” or nerve pain instead. Which thinking back after my surgery in 2012 I did have similar pain but this round feels worse than last time. Idk. Maybe my fall made it worse..idk. 🤷‍♀️🤷‍♀️🤷‍♀️ anyway that’s the update.

other than that it was a great visit. I spent over a week (September 20- September 29) at a friend’s house; her family tried to convince us to move out there. LOL.

In other news, even though the infection has cleared up in my back, they still want me on infection meds. Also in other news, the rib pain that used to plague me before I had that wound issue start (after 2012 until the wound started,) is back. UGH. wish that would’ve stayed away.

Still no word from the geneticist about an appointment for my EDS- UGH!

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

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 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: Broken rods again..What does it mean?

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As we know, my rods are broken once again, but until Dr. Kelly receives my Xrays from OGH and I hear back from him and go to my appointment in Septemeber, we do not know what will happen. Will I have another surgery? More than likely- I mean my rods can’t stay broken. What does that mean?  Well, more than likely it means another surgery, recovery all over again, push back college again, postpone the wedding again, having to raise money or apply for hardship case again since St Louis Barnes Jewish doesn’t take out of state Medicaid, and the talks of David and I starting a Food truck business will also be put on the backburner. 

I am tired of the rods breaking; this is the 2nd time! Maybe I should just put myself in a plastic bubble or “ground myself” permanently into a wheelchair and say “Fuck walking” – maybe I won’t injure myself, since I can’t seem to not be a klutz. I don’t know what the answer is. 

I am just dreading it. Dreading facing my parents about it, dreading facing doctor kelly about it, I know accidents happen, but I feel like I am a disappointment and let everyone down even though I did everything right this time: I didn’t get on inflatables again (I learned my lesson from last time), I was cautious when picking up on my niece or stuff, I was cautious and didn’t bend- instead I squatted or got on my hands and knees,) and yet, I still broke my rods. I wonder if my Ehlers Danlos has something to do with it? Hmm. Guess that’s a question for when I do see that EDS genetics doctor. 

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Disability/Scoliosis/EDS Journey: Ended up in ER

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 8/12/2020

So earlier today, I had my appointment with my GP who agreed to refer me to an EDS geneticist that I had found in New Orleans- Great news, right? Right. 

later that evening, I was outside helping my fiance’ do some yard work around the backyard and he asked me to go get him some bottled water; should be a simple task, right? Wrong. It ended in me having to go to the ER. 

I went into the house, got the bottle waters(1 for him, 1 for me), and started back out the backdoor: Now our backyard door has a drop about 1-2 ft and then the first step. I don’t know if I missed the step or if my ankles/legs decided to give out; it all happened so fast- All I know is next thing I know, I am losing my balance and falling forward and landing face-first onto the concrete sidewalk. 

Landing forward, should spare my rods right? Hmm. well, I’ll get to that…

When I fell, I hit my legs and knees and felt like I couldn’t stand right away, I busted my head on the concrete and had a big gash and later a knot, scraped up my right wrist, and had landed on my left ring finger that had started to already swell. 

I waited for a little while to see if the headache would subside and I’d feel better. No luck. So we went to the ER. They did a CT Scan (to look at my head to make sure no damage) and a Xray(to look at my rods and back). 

The Drs said the finger wasn’t broken; it was a busted blood vessel and ice and rest should bring down the swelling. The CT revealed no signs of any damage or concussions. However, the Xrays were not as lucky: My rods that I just had fixed almost a year ago, from being broken previously, were broke once again! Now the rods could’ve been broken before this incident- After all, I was still taking pain medication on and off as needed and I had an experience months ago while still in the apartment where i had stood up and it felt like a popping shockwave down my back. The timing just really sucks, so now I have to call Dr. Kelly and tell him the bad news about my rods. I feel like I let everyone down again, but I did everything I was supposed to- I wasn’t straining, I wasn’t bending, I was being cautious,, I didn’t get on inflatables this time and I still end up with broken rods. I wonder if my EDS could be a contributing factor to the rods continually breaking? I suggested it to one of my fellow Scoliosis friends who is in a scoliosis group and said there was a girl who kept breaking her rods and getting infections and was later diagnosed as EDS and ended up having her rods removed, so it could be a contributing factor. Hmmm….I don’t know. Seems like I try to do everything right and then something still f** it up and I am back to being a disappointment. UGh. I hate these voices in my head and feeling like I am mentally unstable. Will things ever get easier? 

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disability Journey: Thought of the day- Medications and side effects…

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 thought of the day…8/10/2020

like for real why do medications cause side effects? Like pain meds help with pain but in the same token, you might end up adding in depression, anxiety, mood swings, agitation,etc. (to which I already have some.)

so it’s like okay..do I wanna deal with pain and possibly just cry to the point of wanting suicide…or do I take the pain medication and stop the pain, but end up depressed or miserable and still wanting suicide for a different reason other than pain- because of emotional impulses and acting like a toddler throwing a tantrum? hmmm.

oh and then lets not forget when I am on pain meds but not sleeping, I tend to “go down the rabbit hole” and spiral emotionally- like right now, I am convinced I have Borderline Personality Disorder.

guess the saying is true, “Idle time is the devil’s playground.”

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Disability Journey: through Mom’s eyes

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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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Very rough Emotional day

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technically it started last night. It was a bad pain night and I couldn’t sleep. I stayed up till 2 in the morning before sleep finally overpowered me.

I slept on and off. Woke up to feed the cats, stayed up a bit, went back to bed and slept again. had joint and head pain most of the day.

Then the icing on the “crap cake” of the day-

poor david just witnessed a “Jamie Disability Meltdown” Adventure

it started with him asking me to put mayo and mustard on his bread for his hotdogs while he was microwaving the hotdogs…so I did it my way, on the plate and just spreading it with butterknife.

David: why you don’t hold a bread in one hand and use the knife to spread with the other hand?

Jamie:(a bit sarcastic/snarky) because if I hold it in one hand, it doesn’t hold flat, ill squeeze/bend my hand and then you will have squished bread..

David: you can’t hold your hand flat?
Jamie: (again, snarky/sarcastic) No, I cant. its called Ehlers Danlos..remember..that thing I have that makes my joints loose and weak.

David: come here. I’ll show you.
Jamie: (getting annoyed and flustered because I been living with this 29 years, does this dude seriously not think I’ve tried multiple ways to do things?) No. *voice starting to shake and fists start to clench*

David: come on Jamie, just try my way.
Jamie: (finally breaks down and flood gates open) David, I’ve had this shit 29 years, I’ve tried every way I can think of. This was the easiest way.

David: okay. okay. I wasn’t teasing you. *trying to hug me*

Jamie: I know. But still, if you had something for all your life and parents who taught you to be as independent to the best of your abilities, you think I’d just give up? no. this was the easiest and most accessible way for me.

David: I didn’t know. I only been with you 3 years. calm down. its okay. i still love you, you’re still beautiful. calm down. you gonna give yourself a headache.

Jamie: *sniffles and trying to calm down* I already had one to begin with.

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hey if he wants to be future husband of someone with a disability, he might as well see all the ugly sides too. 🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️ he wasn’t there for the 2012 episodes-poor mom had those episodes and she didn’t trigger them…she was just in the “crossfire” lol

and then later on another incident involving David happened: we tried to make waffles breakfast for dinner but no cooking spray, so tried to use regular cooking oil, but they stuck and didn’t cooperate so I was put back in that “i can’t do nothing right.” Mood.

I hate days like this where my disability and the side-effects of it, feel like the world is closing in around me and I cant breathe. *sigh* just another day. Things will get better. Tomorrow is another day.