Tag: support
Planning a Q and A video…with mom….Need questions!
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.
A wrecking ball of bad news; my heart broken and demolished into a zillion pieces.
Today, while in the waiting office of my pain management dr, I was scrolling through facebook, when I suddenly saw something that ruined my entire rest of my day; A friend of mine in St Louis, Missouri, Mr. Mike James, passed away overnight.
I met Mr. Mike James in 2012 while I was in halo traction at Shriners Hospital for Children-St Louis; he worked at Cabela’s and the company would come to the hospital once a month for “Cabela’s night” where their volunteers would bring educational things about Native Americans, animal trapping, hunting stuff (no weapons) just pictures or like duck calls. It was a highlight of the month for all of the patients to enjoy.
I was one of the oldest patients there, so the adults would often talk to me about “Where I was from,” “what I liked to do,” “If I had ever been to a Cabelas,” stuff like that, and a few of them got close with me because of my “spunky attitude,” these included Mr. Mike James, his wife Nancy, and our mutual friend Beverly Duval. They were there through it all- my surgery, my recovery until I went home, when I went back for checkups, when Beverly hosted me for a week for spring break, my first boyfriend, and they had just met my fiance’ and he approved of him, even liked him, and planned on attending the wedding next year. Now he’ll just attend in spirit.
One week and a day ago, we were having dinner with you and your wife. One week and a day ago, we were laughing and chatting and catching up, you and my fiance’ were talking “hunting, guns, Trump, politics, all kinds of things.” Plans were made to attend my wedding next year, talks of us thinking of possibly moving near you and your wife, plans for you and my fiance’ to go hunting together.Â
Now you are gone, back to heavenly home and everyone left behind are in mourning.Â
You were one heck of a guy, Mr. Mike James. I will miss your comments on my facebook, I will miss seeing you when I go up to St Louis. It feels like a bad dream that I cant wake up from. I wish I could just wake up and this nightmare not be real. It feels like someone punched me in the stomach. it feels like a giant lump in my throat. It feels like my heart has shattered into a zillion fragmented pieces.Â

đĽ RIP Mr. Mike James. I know you def. earned your angel wings.

â¤Â Fly High.
another sleepless night; chronic pain and tears.
A bad storm passed through Louisiana this week so it has been quite a bit of sleepless nights for me lately and then add in the dreaded once a month bullshit us females have to deal with, adding in stress, anxiety, hormones, emotional roller coaster, all that (sarcastic tone) “fun.” Tonight, I tossed and turned for 2 hours while my fiance’ just lays next to me snoring; sure, I could wake him up and make him suffer with me, but that is selfish plus he works to provide for us, so I guess he needs the sleep more than I do, but it sure would be nice to be able to talk these things out instead of blogging them.
I have a mattress that can elevate the head, it helps with migraines and sometimes my upper back (then I gotta deal with my lower back and hips hurting), but tonight my upper back is hurting and I am not even gonna use the head-elevation because lately it has been making my fiance’ back hurt in the morning; which sent me down the dreaded “rabbit hole” of the uncertainty of a future together: What if I become bed-ridden, what if he has to help me with everything more than he does now? That isn’t what he signed on for! It isn’t fair to him. I know he made a commitment to me and he constantly reminds me of it anytime I start crying and freaking out about how much pain I am in and the fears that sends into me about how uncertain my life and future are; I just don’t want him to have regrets or resentments. I love him, I really do, but when these fears kick in, I go into flight mode and tend to push him away, thinking I am saving him from being stuck in a sucky future with me and my damn disability. How can I expect him to accept it and what it does to me, if I cant even accept it completely myself?
If there was a pill created to make me “normal,” like everyone else in society, I would take it! Even though I also feel like having my disability has made me a well-rounded, wise, empathetic, compassionate, supportive, loyal, passionate person. Does it make me a bad person? Why is it I can be a support system and cheerleader for others with disabilities but yet I cant even accept myself completely? Does it make me a hypocrite? Maybe its just the pain talking; well the pain and the damn devil. I need to really work on myself and loving myself for me; whole-y and completely. Maybe after my surgery to fix my rods, maybe my pain will be better, and I can start being happy again. One can only hope.
Haters can “move along,” (older youtube video)
AntiBullying Rant (youtube video, Posted 2018)
End bullying now!
Our Crazy “Twisted” Rollercoaster Love story=David+Jamie (old written piece)
Once upon a time, there was a young woman named Jamie. Jamie thought she would die alone because she wasn’t normal; she had many medical disabilities and low self-esteem as a result of being bullied most of her life. She ended up dating a guy with spina bifida who made Jamie realize that love was possible, but she thought it would be with someone with disabilities because they were the only ones who understood that majority of the world was against them. However, Jamie had been raised to be independent and the young man with spina bifida relied and blamed everyone else for his problems, so Jamie, for the sake of her sanity, ended it because she was constantly nagging him and trying to change him, which wasnât good; she didnât like the person she was becoming.
Once again, Jamie thought she’d die alone. One day, she decided to muster up courage and see what would happen if she put herself out on the dating sites; and when someone would message “hey beautiful,” she would reply, “are you blind, being sarcastic, or just crazy? I am not beautiful.”
              During one of these encounters, a young man from Simmesport, Louisiana; an hour from where Jamie lived, contacted her. They talked via message on the dating site for a while and then he asked her if they could meet. They met face to face, at La Hacienda and it was a good date, however, Jamie was still hesitant and shy; she would check her rearview after the date to make sure he wasn’t following her…Talk about paranoid!
On their âsecond date,â they went to a production at Opelousas Little Theater; Rocky Horror Picture Show. Neither Jamie nor David had seen the movie and didnât know what to expect from the showâŚletâs just say it was Interesting, funny, and a little disturbingly awkward (at least for Jamie, not sure what David thought.)
              He took her to meet his family and they instantly fell in love with her; especially his at the time, 7 year old Niece, “Skybaby”, which Jamie and David try to include in stuff ocassionally to get her out of the house. (and now his other two nieces “J bird,” and “Ru-Ru/tator tot”)
They continued to hang out and soon a love started to blossom. The young man was named David. David made Jamie laugh and smile, and some of her âquick wit come-backsâ had returned; something her mom commented that âJamie had lost over her years.â He was a great cook and baker, like Jamie. He was motivated, and went to church with her (something TJ did not do) . He was most, if not all, the things Jamie had dreamed of when she dreamt of love, but once she realized she was different than other girls, she gave up that dream. She had always thought âif guys only want dream girls with hot bodies, then I am their nightmare.â David changed that point of view somewhat, although Jamie still questions why he is with her when he could have anyone.
              Now the question of this journey will be whether David can break Jamie’s shell of low confidence and self-esteem, and make her see her “true beauty,” that he sees in her? Only time will tell or he may never break her out of it completely; a year later and she still questions why he is with her, why he loves her, and she is constantly worried that their future will be bleek and david will have regrets later on. What if she can’t give him children? What if she loses her SSI because they get married? what if his paycheck isn’t enough to support them until she can get her degree and make money herself?
Worry, worry, worry, sometimes I wish I could turn my mind off! I love David but when that doubt gets into my head, I push him away because I worry I am not good enough for him. I need to stop and realize Love can conquer much, and doubt is death. Maybe One day I will. When I am not worrying and letting it get in the way of our relationship, the relationship is great fun for the most part. David loves to cook together in the kitchen. Sometimes, he will come up behind me and hug me or sometimes tickle me while I am doing something in the kitchen (cooking-wise or doing dishes or laundry- our washer/dryer is in part of the kitchen.) We play fight, Iâll play-punch him, and he will hold me and hug me, or sometimes pick me up and hang me upside down or over his head (I am terrified of heights) but I never âsurrender.â I keep âfighting him.â Other times, we enjoy snuggling on the couch to watch movies together, and play âpopcorn catch (which I suck at)â but it is a great excuse to start a popcorn fight (throwing popcorn at each other, which Beignet enjoys cause she gets to eat the popcorn when it hits the floor.)
After a year we are still learning each other; our views (that sometimes differ which cause some arguments but we end up âagreeing to disagreeâ whether it be his patience level with his niece, Beignet sleeping in the bed, politics, religion, etc.), what things he enjoys/what things I enjoy, favorite foods, ideas for our future, etc. Our summer vacation in Hot springs was so much fun and I am glad my parents let me bring him along to our condo. It was a great bonding experience, especially when we went to the superhero and star wars museum! That was fun; dressing up in the Jedi robes and playing with the light sabers, hitting each other with them. HAHA! It is so funny how he was able to get me into star-wars, something TJ tried and failed to do. Guess David just had something a little more special, I donât know.
One thing that really gets on my nerves though is that I look so young and he looks so much older (even though in truth it is only 6 year gap), people think he is either my dad, my older brother, or worse, a sexual predator; âAww what a great dad,â âwhat a sweet older brother,â or âwhat is that old man doing with that young girl?â It is even worse when my mom is with us, people then think him and my mom are married and I am their daughter. I am tempted to wear a sign or make t-shirts for us that read âI am over 21, he is not my dad nor is he my older brother and he is most definitely not a sexual predator. Mind yâall own business and stay out of mine (maybe add a middle finger for effect Ha ha.)
All I know is I truly am happy with David ž, (if not more) of the time with him. I canât see my life without him.
We got engaged in December on Christmas Eve when he proposed to me at my parents house. đ The wedding date is set for May 23, 2020 unless it has to be pushed back due to medical recovery from my surgery.
The last week-Stomach problems-May 2019
The last week or so, I been having stomach problems. First, my fiance’ niece was over here and any change in routine and my stomach routine goes out of wack (constipation). I was hurting more in my back and hips, lots of belching, bloating, nausea, decreased appetite, and gas; so I thought maybe it was due to constipation, however, once I did get back on my bathroom routine, I still had problems continue.
when I am hungry, I get nauseated, and once I eat, it chills out for a little while, unless I overeat, and then nausea comes back. I still have decreased appetite, craving more sweets, still belching a lot, still got a lot of bloating and gas, and at least my pain in my back and hips has returned to its normal-pain levels.
Yesterday and Today, it was BBQ lunch I had yesterday and then I also had red velvet cake today, so my stomach is really hurting and gurgling đĽ
August cannot come fast enough. I think that is a lot of my issues- the broken rods, my Kyphosis getting worse again, putting pressure on my tummy. đŚ
I’m sorry! an Open letter to my fiance, David- May 2019
Sometimes I wonder why my fiance stays with me: mean I never wanna cuddle/love on him because I am either hurting or it tickles (I’m really ticklish); I am always on my phone/computer/or tablet(The same things I got annoyed with my ex over- not spending time with me), then I get angry at him for the stupidest shit. Tonight I lost my anger with him over a joke.
We had been “play- bickering” before the “joke,” and I guess I was already a little irritable from that and then he was teasing me because I had deflated my helium balloon from my birthday and had sucked the helium and he said “you already act like you don’t have any brain cells. You killed them all.” That is a trigger for me, because I already feel like I don’t measure up because everyone I graduated from high school with has already gotten multiple degrees or have careers and I just have associates under my belt, struggling to get my bachelors, and I struggle very badly with math; So when he said that I lost it. I got so mad, I threw a can at him, I don’t even remember what the can was, maybe it was canned Air that he uses to spray his computer to dust it- I don’t remember, but he got his feelings hurt and lashed out at me for it and I totally deserved it.
We made up now, but still I feel so guilty about It. I mean all he does is try to love and have fun with me, and I take things the wrong way. He cooks for me, he helps me when I am hurting, he even started a go fund me for my surgery. He just says stuff without thinking sometimes He’s human and flawed like all of us, but at heart, he is a good person. I do love him, but my anger, anxiety, low self-confidence, and depression get the better of me. I will continue to try to do better in the future, David, and I am so sorry. đŚ
Love,
Jamie â¤
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.
âAinât nobody got a mom like mine. Her love to the end, she my best friend.â My mom is and always has been one of my most loyal best friends. She is there when I have âgirl drama,â when I am âhating on myself,â because of my disabilities and pain, and sometimes she is just there to make me laugh or get me out to go have fun.âAll the times that I cried, she made me feel better,â itâs true, whether it be spiritual guidance with my questioning Godâs motives for my disabilities, girl drama, relationship drama, etc.âShe taught me how to love myself,â she always told me, âNormal is overrated,â âThis is your normal,â âGod didnât make a specific mold for people, that is society trying to fit everyone in a mold,â and the most important, âlove yourself first, then friends will come, and after that, eventually relationships. You should always come first.âThe second song, âMother like mine,â by The Band Perry; âThere’s no safer place I’ve found
than the shoulder of her white night gown,â 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 wouldnât clown me like my peers, cousins, brother, and even dad, might have done.âSo the wars would all be over
‘Cause she’d raise us all as friends,â rings true because she always taught me âtreat others as youâd like to be treated,â and didnât spout off any type of negativity towards certain religions/races/ethnicities/ other differences like some families shove down their offspringâs throats.âDon’t go away, don’t go away from me,â 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, âBecause you love me,â by Celine Dion. âFor all those times you stood by me,â 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.âYou’re the one who held me up, never let me fall,â when I was a weak tiny baby and didnât meet my walking milestone on time, she wouldnât 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, sheâd carry me. When I would âdump on myself,â she was the one who would âhold me up,â and bring me back out of âdepressionâ because she suffered from depression and didnât want me ending up there.âYou’re the one who saw me through through it all,â no matter whether it be something related to my disabilities, challenges, illness/sicknesses, fights with friends, etc., she always saw me through it all.âYou 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 meâ â 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 donât 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 couldnât reach, she would pick me up at times (when I was little, now she really canât 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.âYou gave me wings and made me flyâ- whatever my dreams, she supported them and would do whatever she could to help execute my dreams and hopes and wants.âI lost my faith, you gave it back to meâ- when I struggled with my faith and questioning God about my disabilities or my purpose in life, she was there to help me.âYou said no star was out of reachâ- she always told me I could do anything that I put my mind to.
âI’m grateful for each day you gave meâ- I am grateful because some people would have aborted me, she didnât.
âI was blessed because I was loved by you,â and she taught me how to love.The last song doesnât really describe our relationship, but I have to include it because of the memory attached to it and that song is âBrown Eyed Girl.â It is mom and Iâs favorite song because when I was really young (I think 3 years old or so,) when Iâd get home from preschool or days I didnât have preschool, Mom would put on the song and weâd dance together in the living room and even today I tell her, âI will always be your brown eyed baby girl.â
As Iâve grown older, Iâve come to realize that not everyone is lucky to have wonderful mothers, in fact, some peoples families are so dysfunctional that by adulthood, theyâve pretty much cut off their families completely; Even now, my mind is completely blown away by this and canât 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 ânormal,â 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 Motherâs Day!!!