Love you Mom, happy Mothers Day!
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!!!
the “latest and not so greatest”- May 2019
the latest update from my Scoliosis Journey: St Louis (Dr. Kelly’s office) called. He still bouncing around about the simpler (just fixing surgery) or the bigger surgery. I told them Dr. Lenke said he was gonna talk to dr kelly and how he (Dr. Lenke) suggested the smaller surgery. Apparently, he hadn’t talked to him yet, or the nurses weren’t updated. 🤷♀️The nurse made a note and said if we do the smaller surgery, the date she has is Aug. 14(two days before the anniversary of my surgery in 2012) and the pre-op appointment would be July 16. They want me to do a pulmonary Function Test (I am having them fax the orders to my gp- because my Respiratory Doctor said and I quote “didn’t see it as a necessity” because more than likely they would “do one before surgery,” and I “have my CPAP machine this time.” 🙄
in other news, I went to a pain management appointment on Monday, April 29. It was okay aside from spending all day there. It was just a consult. Typical dr. appointment- xrays, weight, and height, looked at my back, tested my reflexes, all that boring medical stuff. lol. I go back on May 28.
Also, Still fighting with that stupid wound on my incision- it opens, almost fully closes, then reopens. It’s oozing bad the last few days, going to wound care today at 1. The wound probably will keep giving me issues until I get the rods fixed. 🤷♀️🤷♀️🤷♀️
Latest update in “my twisted journey” called Life- April 2019
I’m just got off the phone with Dr. Kelly’s office in St. Louis. They offering two surgeries. One to just revise surgeries. And one to take a bone out of my spinal column area and make me straighter. Longer surgery would be Sept. Smaller surgery would be August.. Longer surgery would give better balance. She’s gonna talk to dr Kelly again.hes out of town right now, so it’ll be sometime next week. Smaller surgery , if I’m not balanced enough, rods could break again. But longer surgery is messing near my spinal column and could paralyze me #decisionsDecisions 🤷♀️🤷♀️🙏🙏 I dunno. I mean id like to be straighter and not risk rods breaking again, but also like being able to walk and stuff. And also don’t wanna risk another trache.
My thoughts on “Touched by Grace” Movie- April 2019
My mom has amazon prime for a while and gave me her account info so I could watch some movies. One movie I had been wanting to see was “Touched by Grace,” a movie that I consider a cross between “Carrie” and “Wonder,” because the mean girls of the movie pull the same kind of prank on Grace that they did to Carrie, except they didn’t pour blood on her like in the mean girls in Carrie.
The movie doesn’t end happily. Even sadder is there are people like that out there in real life who bully those who are differently abled and can’t help being differently abled. It teaches good lessons though. But the saddest fact is this is something that people of different races, religions, nationalities, disabilities/non-disableds, face bullying each and every day. Even Jesus was “bullied” by those who thought differently and were jealous of him. He was wrongly persecuted and sentenced to death. Those who are differently abled usually have multiple problems along with their main diagnosis, whether it be seizures in addition to their autism ordown syndrome, bad hearts and in need of donors, asthma, etc. We never know what could be a consequence of our actions. A “harmless prank” (bullying) could end up costing someone their life. #EndBullying#EndHate#StoptheViolence#WeareAllHuman#TouchedByGrace#Wonder#TreatOthershowYouWanttoBeTreated#GoldenRule
update from last post- April 2019
Just got off the phone with Dr. Kelly’s nurse person (dawn). She said that she hasn’t gotten the CT CD in her possession yet, despite that the tracking on USPS said it was delivered Friday. She says not to worry that it doesn’t mean it wasn’t delivered to a wrong spot, she said more than likely it has arrived, but the mail department has to sort through the mail and then bring it to them. She said as soon as she gets it, she will bring it up for Dr. Kelly to look at and then call me ASAP.
Will keep yall posted. If I haven’t heard back by Wed or Thursday, I will call them back again
Gonna be 28 in 13 days!!! ahhh!!! – April 2019
I cannot believe that my birthday is in 13 days and counting! I cannot fathom that I will be 28 in 13 days. It came too quickly. All I want for my birthday is a simple little get together at the apartment pool (If I am not in St Louis having back surgery yet.) I hope I get it done soon though, and I hope I am in and well enough to go to my cousin’s wedding in June (but his fiance and he both said they understand if I can’t.)
Just playing the waiting game; I called the hospital this morning and left a message to see if they received the CT scan disk. According to the USPS tracking, it arrived at its destination Friday, but that doesn’t mean they’ve checked their mail or anything yet; So just waiting for a call back now.
Don’t know how much longer my pain meds will work, they are starting to require more doses; David (my fiance) used the wrong word the other day. He used “Addicted” when he meant “immune” oooh boy did I give him an ear full! That is one thing you never ever ever use with someone who suffers with Chronic pain. That is one thing we constantly worry about when we have to take pain meds. People thinking we are “Addicted.”
Yeah, if I could let people feel what I feel on a daily basis with just a touch, we’ll see how many people think I’m “lucky” because I get to use handicapped parking, hover-scooters, etc. We’ll see how many people think I’m “addicted” to my meds.
we’ll see how many think I am just “lazy”.
…great now I wish I had that ability. darn it!
Who says we don’t live in an ableist society? *warning:Rant!* -April 2019
Who says we don’t live in an Ableist Mindset society? Those people are either in guilt or denial or just too blind to see it. Society considers Ableds the norm. Look around:
1.) PreBirth Screenings: what is one of the first things said after the diagnosis. Usually, options to abort the pregnancy. The ones not in prebirth screenings and are later diagnosed: doctors tell parents to institutionalize, medicate to the point some kids are zombies or some therapies like shock therapy or the like. or what about school- when some with disabilities are segregated off to “special classes” all day away from mainstream “Normal” children, which results in isolation, lack of social skills developing, the “normal” kids aren’t exposed to differences which result in teasing and bullying, we are “labeled” and Limited. We get that diagnosis and suddenly people are like “oh how will she be a functional adult citizen when she older?” “She can’t work” “probably doesn’t have a good mind.”
2.) Media- TV, Movies, Magazines, etc.: how many portray disabilities? And the ones that do, are they portrayed by people with the actual disabilities, usually not, usually they hire someone without the disability and put them in makeup..as great as the movie Wonder was, it was portrayed by an actor without a disability and put into makeup. How many magazines or books feature disabilities? YES There is more than there was back in the olden days, but it’s still a minority compared to others.
3.) Accessibility: Yes, they have elevators, but what’s one thing always said when a fire breaks out.. Don’t use the elevators.. so are the disabled suppose to just sit up in a burning building and wait for help? We need backups- A ramp that goes up or one of those chairs that go along the stairs or something! Look at the Cracks in sidewalks.. some are almost as bad as potholes in the road. Some people in wheelchairs without seatbelts can get “dumped out” due to cracks. Or older buildings that don’t have “accessibility.” It is 2019, you can apply for grants to get the accessibility.
4.) Bullying/encouraging suicide- those with disabilities get on social media and express themselves on Youtube or something like that and get “trolls” and “cyber Bullies” who encourage them to “kill themselves” or “how their families would be better off, ” “how we should have been aborted,” etc. Stuff a lot of us have heard our entire lives. People getting rude to us because we are: Walking slow, not really paying attention and “in their way,” drive slower than other people, struggle to drive the hover-carts in the stores, etc. Whispers behind our backs, teasing to our face, staring at us like we are some sort of “Side-Street Freak Show.”
oh and lets not forget how alot of people can abuse the system, but a disabled person stays honest and they can lose benefits by getting married (which should be a basic human right for anyone), trying to work and be functional to the best of their abilities (can’t have more than $2000 in the bank or you get knocked off and cant have a lot of assets,) just living with my parents, I only got $86 in food stamps. I get more now living in an apartment and having very little money for any fun due to bills and when i am in college- tuition. #AsifLifewasntHardEnoughwithjustDisabilities
So yeah, keep telling yourselves, we don’t live in an ableist society. 🙄🙄🙄🙄🙄🙄🙄🙄🙄🖕🖕🖕🖕🖕🖕🖕🖕🖕🖕
#DisabledsNeedaVoice #WeareHumanToo #FuckSocietysStandards
Another Twisted Turn in “my Tale”-April 2019
So for many of my followers on Facebook, you probably are aware of a wound I have been fighting for over 1.5 years and if you don’t follow me on Facebook, then you aren’t aware of much since I just started really keeping up with my blog.
Anyway a little backstory, May 2017, I awoke one night with my back feeling swollen and hurting. I thought a rod had penetrated my skin and was broken (turns out there were broken rods,) I had an abscess (boil) on my back, which, a day or two later popped, and ever since I been fighting with an open sore wound that comes and goes. For two months, I saw my GP, after a few rounds of antibiotics and it not healing, she referred me to Wound Care.
Wound Care has packed it with mesalt, cauterized it, packed it wound-gel, and even surgery to clean out/take out the “sinus tract.” The wound still comes back. Thankfully, we don’t think the rods have been infected (hopefully they aren’t wrong).
Anyway, It had behaved for over a month or two and I thought for sure it had decided to finally start to heal up. Then tonight, I noticed the area around it felt swollen around it (fluid build up) and was oozing slightly with a tinge of blood too), and that it itched, So I had my fiance’ look at it and sure enough, as usual, the hypergranulate tissue poked through the wound and reopened it. AGAIN! So will call wound care in the morning and try to get in. *SIGH*
#NeverEndingStory #StoryofMyLife #MyBodyHatesMe
Random Thought after watch sixth-sense clip–March 2019
Rethinking about #TheSixthSense and knowing now about #MunchausenSyndromeByProxy, what if that’s why that mom was poisoning her kid? Not to kill her but to get attention from having a sickly ill child? Like Dee-Dee Blanchard did with #GypsyRoseBlanchard ??? #OMG #MindBlown
It all makes sense now!
Jamie's Twisted Journey 