Ode to Mom on Mother’s Day- May 2019

Ode to Mom.
There are many ways to describe my Mom; the best way is through several songs lyrics.The first song, Mom by Meghan Trainer. 
“Ain’t nobody got a mom like mine. Her love to the end, she my best friend.” My mom is and always has been one of my most loyal best friends. She is there when I have “girl drama,” when I am “hating on myself,” because of my disabilities and pain, and sometimes she is just there to make me laugh or get me out to go have fun.“All the times that I cried, she made me feel better,” it’s true, whether it be spiritual guidance with my questioning God’s motives for my disabilities, girl drama, relationship drama, etc.“She taught me how to love myself,” she always told me, “Normal is overrated,” “This is your normal,” “God didn’t make a specific mold for people, that is society trying to fit everyone in a mold,” and the most important, “love yourself  first, then friends will come, and after that, eventually relationships. You should always come first.”The second song, “Mother like mine,” by The Band Perry; “There’s no safer place I’ve found
than the shoulder of her white night gown,” when I was a little child and scared, she was always there to dry my tears or rock me/cuddle with me. I always felt safe with her. Safe to be my true self without judgment- I could be silly, dance, sing, whatever, and knew she wouldn’t clown me like my peers, cousins, brother, and even dad, might have done.“So the wars would all be over
‘Cause she’d raise us all as friends,” rings true because she always taught me “treat others as you’d like to be treated,” and didn’t spout off any type of negativity towards certain religions/races/ethnicities/ other differences like some families shove down their offspring’s throats.“Don’t go away, don’t go away from me,” definitely rings true because from a very early age, I was always scared of Mom dying and leaving me all alone (even though I had other family-dad, my brother, etc.) I love my other family, but nothing beats the love and support of my mother.The Third song, “Because you love me,” by Celine Dion. “For all those times you stood by me,” she has always been there to encourage and support me whether it be through my medical tribulations, my dreams, struggles in school, or whatever. She has always supported me unconditionally.“You’re the one who held me up, never let me fall,” when I was a weak tiny baby and didn’t meet my walking milestone on time, she wouldn’t give up; she would get on the floor and massage my legs, hold my hands and help me. When I was tired to walk and until my legs almost dragged the ground, she’d carry me. When I would “dump on myself,” she was the one who would “hold me up,” and bring me back out of “depression” because she suffered from depression and didn’t want me ending up there.“You’re the one who saw me through through it all,” no matter whether it be something related to my disabilities, challenges, illness/sicknesses, fights with friends, etc., she always saw me through it all.“You were my strength when I was weak
You were my voice when I couldn’t speak
You were my eyes when I couldn’t see
You saw the best there was in me
Lifted me up when I couldn’t reach
You gave me faith ’cause you believed
I’m everything I am
Because you loved me” – When I wanted to give up and throw in the towel, whether it be schooling, friendships, or other obstacles, she was my strength. When I was too scared to defend myself, she was my voice. When I don’t see things, but she does- she is there to give me advice and help me see things, but also she leaves the ultimate decision up to me. She always sees the best of what I could be.When I couldn’t reach, she would pick me up at times (when I was little, now she really can’t because we are about the same height LOL!) She gave me faith because she has an unwavering faith and belief, where as I tended to struggle. She is the reason why I am who I am.“You gave me wings and made me fly”- whatever my dreams, she supported them and would do whatever she could to help execute my dreams and hopes and wants.“I lost my faith, you gave it back to me”- when I struggled with my faith and questioning God about my disabilities or my purpose in life, she was there to help me.“You said no star was out of reach”- she always told me I could do anything that I put my mind to. 

“I’m grateful for each day you gave me”- I am grateful because some people would have aborted me, she didn’t. 

“I was blessed because I was loved by you,” and she taught me how to love.The last song doesn’t really describe our relationship, but I have to include it because of the memory attached to it and that song is “Brown Eyed Girl.” It is mom and I’s favorite song because when I was really young (I think 3 years old or so,) when I’d get home from preschool or days I didn’t have preschool, Mom would put on the song and we’d dance together in the living room and even today I tell her, “I will always be your brown eyed baby girl.” 

As I’ve grown older, I’ve come to realize that not everyone is lucky to have wonderful mothers, in fact, some peoples families are so dysfunctional that by adulthood, they’ve pretty much cut off their families completely; Even now, my mind is completely blown away by this and can’t comprehend it but it is because I was always surrounded by love in my family.
I love you Mom, you taught me so much, gave me such a wonderful and enriching and somewhat “normal,” childhood and I hope I can be at least half as great a mom as you were to me, when/if I ever become a mom. ❤ ❤ Happy Mother’s Day!!!

Youtube ideas- March 2019- *haven’t done yet*

Gonna do a YouTube video(s) with my fiancé (eventually- when I am not hurting or in pain or drugged up on pain meds). Send us any questions or dares or something fun and we’ll answer/do on the video. #truthordare#QandA#fiancetag#bfgftag#jabberjawingwithJamie#youtube
#JabbinJamie #JamieJabs #JamiesJoy #JamiesJoyfulLife #JamiesJourney

Update: didn’t do, due to no one sending questions for us to answer and no “good days” as far as pain goes.

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.

Update (Feb. 2019)

 So I was “in twitter jail, “suspended from Twitter, but I made a new account because they wouldn’t restore my old one.

I won a free Mary Kay pampering session for me + 8 people (only 7 showed up- which some weren’t even the people I invited, The ones I invited didn’t show up, etc. Oh well, it was still fun! 

Then the last thing, I got a $1000 donation on my go-fund-me-page from the person who wrote the book, “Wonder” turns out she had spinal issues too! ❤ 

Other than that, same old story= PAIN! March 5 can’t come fast enough

Could my problems finally be solved? (Jan.2019)

so update on my twisted medical life: I got into see Dr. Kelly at CAM in st Louis for a consult on my broken rod(s) . He trained under Dr. Lenke, so less chances of my back being screwed up. I have an appointment at CAM center at 8 a.m. on March 5, 2019. I will have to pay $150 deposit , and after they charge for xrays, that should make my balance the $200+ mark to get hardship assistance, since they don’t take out of state medicaid. *Positive Vibes* 

latest update in the winding road that is my life….(January 2019)

 The latest update in the winding road that is my life…. I got a referral to LSU Medical in Shreveport and then also the former care coordinator for the orthopedic surgeon that did my surgery, is trying to get me into the guy that took my surgeon’s position in St Louis, when my orthopedic surgeon moved his practice to NY. Due to neither NY or St Louis takes out of state Medicaid, or Medicaid at all, The only way I can see the Dr. That took my orthopedic’s position in St Louis, is by applying for “hardship assistance.” *Fingers crossed that works.

In other news, my fiance wants to move to St Louis, MO, because he thinks if I am on their Medicaid system, then the ST Louis hospital will have to accept it, plus he is under the impression I’ll get better SSI check (newsflash Hun, the max is $771.00 which I currently already receive.)

I also realized it will be different this recovery time, due to my former physical therapist no longer practicing, I will have to do it through the hospital. UGH!

I also realized I will probably miss my Beignet more than I missed my Mya; If that’s even possible. I love deeply and the thought of once again being away from my own bed, my own apartment, everything familiar and no Beignet to love and snuggle, hurts my heart. I also realized I won’t be in the children’s hospital wing this go-round, so the therapists will probably be tougher, and not as much fun recreational activities to keep my mind off the pain. Well, I guess this is my life punishing me for acting irresponsibly after my first time recovering after surgery. Karma sucks! LOL

Answers Finally! But bad news, another pothole plot-twist: Broken Rods (January 2019)

Due to my wound not closing up, we did x-rays and I sent them off to the surgeon who did my back surgery and he confirmed: broken rods and my kyphoscoliosis deformity was worsening. It would explain my increased pain each year, as well as why this wound isn’t closing or cooperating correctly.
Downside? My surgeon can’t accept Medicaid and it is the only insurance I have. To self-pay would range from 250,000 + dollars, not including transportation costs or lodging or food.

I am blessed, however, with an amazing fiance’ who immediately jumped on the computer to start up a gofundme. He says we will do whatever it takes to get this seen about. We also looked into getting a referral to LSU medical hospital in Shreveport. Also blessed by having the former care-coordinator for my surgeon as a contact, and she reached out to the surgeon who took over my surgeon’s position in St Louis. (The one who did mine in 2012, moved his practice to New York). There is something called “hardship assistance” and I can try getting that. We will still have the gofundme just in case.

So until this is solved, I guess wedding plans are on hold??? I need to get out and start prepping my body for revision surgery.

Link for the gofundme: https://www.gofundme.com/jamie-has-broken-rods-and-other-problems-occurring?fbclid=IwAR1eoT8HJHiIHSc6bX9Ej31bO0mhl5TIETaFEvpw8iXrHhme23ZlKcbbdWk