This afternoon at 3:30, my family packed up the car and headed to Magazine St. to park the car and have a picnic while we waited for that night’s festivities to begin. This is our first Mardi Gras and. unfortunately, my husband has to work for much of Mardi Gras in the French Quarter, so this was really our only chance to spend Mardi Gras together as a family. It was one of those special days that create memories that you will always carry with you, sharing the story with your children’s children, and with anyone else that will lend you an ear to listen.
Cleo and I spread our blanket out, brought out books we were reading, and spend our time basking in the beautiful February New Orleans sun, watching as preparation for the festivies began. People walked passed us, wishing us a Happy Mardi Gras, and police officers made small talk as they were preparing to take their stations for the parade. We watched as people made their way up Magazine Street, returning to their homes from work or driving to meet up with friends to partake in the Mardi Gras celeration together. My husband wandered around Magazine Street, looking for a Daquari chain for me, with no such luck.
People next to us, a man named John, was up from Belle Chase with his two boys, Logan and Joshua. Cleo joined the two in a game of catch. He offered made small talk, shared his experiences of living in Southern Louisiana his whole life. Emily met another little girl and they played sidewalk games together, dancing around the cracks that are infamous in the New Orleans sidewalks and playing an impromptu game of hop scotch without the traditional number grid. The parade began and we watched in anticipation, Cleo holding up her sign declaring herself a novice minion of the Krewe D’ Etat, hoping to get something that lit up the night sky in alternating flashes of light.
As D’Etat reached their mid-parade point, we met a couple named Karen and Dave, who split their time between Colorado and Louisiana. Dave and Karen split their time between Louisiana and Colorado. We shared with them that it was our first Mardi Gras, told them about moving from Wisconsin to New Orleans, and talked about Cleo. Karen and Dave were so full of life, welcoming us into their Mardi Gras experience. Karen held up Cleo’s sign that declared it was her first Mardi Gras. As the floats passed by, we would make as much noise as possible and before you knew it, Cleo had learned the coordination needed to catch the beads. Dave gave Cleo some beads, telling her that if a boy gives you beads, you need to give him a kiss. Cleo got a kick out of that, and gave Dave a kiss on the cheek.
During our time at the parade with Karen and Dave, I forgot about how much pain I was in earlier in the day. I forgot about everything I was worried about just a few hours earlier. I forgot about what I was doing this time last year and just how difficult the year had been, one plagued with disturbing revelations, familial drama, and the lethal combination of worry and stress. Karen and Dave showed us what being a New Orleanian really is about. They laughed, they smiled, they enjoyed life. They didn’t just enjoy life, they really lived life. Their kindness, not only to Cleo, but to The Viking and I, was unbelievable. I felt so fortunate, so lucky, to have had this experience – an experience that came after dealing with rudeness and greediness – to instill in our whole family is that looking out for one another is what New Orleanians do, more so here than any other place, because the people here in New Orleans have learned what the important things are, and how to be grateful for the blessings they have, not angry about those things that they don’t.
The Viking works the rest of Mardi Gras. Today we are taking a much needed break away from the parades and festivites. Tomorrow we may meet up with Dave and Karen again. Whether we do or not, they really presented us with an amazing gift. Thank you, Dave and Karen, for showing us what carnival season really is about.
“What can I do to help?” my husband asks me, seeing exactly how much pain I am in when I attempt to walk from the couch that I have made my home to the bathroom, five feet away.
“Take me out back and put me out of my misery, ” I respond, thinking of how we took care of ailing livestock back on the farm in Wisconsin.
“There is nothing you can do, honey, just help me.”
Unfortunately, in my life, this exchange takes place quite frequently. Sometimes it takes place daily, sometimes weekly, but it is a constant in my life.
For me, it is apart of living with fibromyalgia.
Fibromyalgia is so much apart of my life that I have a nickname for her, Fibro, just like I call my husband Papa Bear or my daughter Pumkin or Peaches or Baby Girl. I don’t have the affection for Fibro like I do for my family, but the thing it has in common is that it is just as much apart of me as they are – it is always here, even when I wish it would go visit somewhere else.
Fibromyalgia affects different people differently. For me, when Fibro is at full flare up, I am essentially immobile. To walk from the couch that becomes my marked territory during these days to the bathroom, a whole ten feet, tears are in my eyes and I am crying because it hurts to even walk. This isn’t an exaggeration. Every step I take causes a shooting, burning, and electric pain to course up my legs from the time that my foot lands on the floor to take a step until I attempt the next step with my other foot.
There have been times when I have walked and my legs completely give out from under me and I fall. This is especially inconvenient when you are out in public and you fall down hard on the cement. This also leads to a plethora of fire trucks and EMS trucks being dispatched to your location, to make sure you are ok, and you have to look at them, humiliation on your face, and tell them that you are just fine, that your legs just gave out for a minute and you will be ok.
For me, Fibro means planning my days and activites on a day-to-day basis — needing to know exactly how i am going to feel that day. It also means not being able to work outside of the home — I obviously can’t get a labor job (although I LOVE labor jobs), sitting for extended period of times causes my tail bone great pain, sometimes my arms hurt so much that lifting them is nearly impossibly, and then there is that whole walking thing. This means that our family’s survival lays firmly on the hands of my husband, who although he has a law degree, hasn’t been able to find a regular job. So, on top of the pain that I feel, I have a whole hell of a lot of guilt, too.
Aside from the pain with my legs and hips, it is rare day when I am not plagued with a headache. I pop Advil and Aleve like it is candy. I lay down at night and I can feel my head throb. At times I ask my husband if he thinks that I have a brain tumor or if you thinks the thing that will get me is a brain aneurysm. I know it is all apart of the Fibro, but I worry. A. Lot. I also experience non-cardiac chest pain, which is good when you want to go out and live a normal life with your girlfriends. The looks you get are horrifying, though you know they aren’t horrified by you, but worried about what this means and what they should do.
I am thirty-two years old. I should be going hiking. I should be out wandering around this city.
Instead, I am living in pain almost every single day. And nothing makes the pain go away, it just fades into the background and pops up at the most unappropriate times.
Oh, and if my words get confused, or I am having difficulty understanding something that you say, it isn’t because I am a thick person. It’s because “the fog” and memory loss comes with Fibro too.
I went to the Krewe of Muses parade last night with Cleo. I had been told by a variety of people that this was THEE parade to go to and I would love it. All day, I rested, suffering from foot and leg pain, hoping that staying off my feet and taking a nap may dull it just enough. I forced my body to go, even though it was begging to just stay at home. A few hours later, after I arrived safely home, I could hardly walk. The pain was horrible. And here I am, trying to get the pain to a level that I can do it all over again tonight for the two parades rolling. Tonight, luckily, my husband is home so I won’t be doing this all on my own. Thank. God.
It’s hard, being 32 and experiencing this level of pain. It’s harder being a mom and not being able to take my daughter to do everything I want to because I am afraid of what will happen or the pain is just to much or my husband happens to be working that day. It’s hard not beating yourself up. We would be in a much better place financially if I didn’t have Fibro. We would have a much more active life. It’s hard not thinking that your husband deserves much more than a woman that is broken, him having to play caregiver some days.
A day with fibromyalgia is not a fun day. But it is a day. And at least I have one more day. Alone or not, I have one more day.
I was anxious. Were we going to the right place? Would there be parking? What would we be dealing with? Would it be safe? Ever since I was mugged and had my wedding ring stolen, safety has been a big issue for me. In fact, it has probably been the only issue, causing me to sometimes shut myself off from the rest of the world in my safe little bubble. Then I start to think about how sometimes even bubbles pop and I don’t feel so safe anymore. Being outside, in the dark, doing something unfamiliar – ack.
We arrived early, nearly an hour, parked and walked a couple of blocks up. The street was congested, only because it had been blocked off, and we found a wonderful location, within the first block of the parade. We sat down and watched as the block came alive – a resident was interviewed by a news crew, the police mobile unit moved in, officiers watched the block, the city tow truck met up – and as the sky darkened, the band played, and the parade came alive.
This is our first Mardi Gras. My daughter, dressed in her cowgirl costume, held a sign that read: “Throw me something, Mister! My 1st Mardi Gras!” On the same was a heart with NOLA written in. I became as excited as she did, waving my hands in the air, cheering, screaming to them to throw me something. My daughter caught the attention of the camera man covering the Krewe of Druid parade. She became bashful, then waved to the camera.
We had our hands up, waiting for the coveted beads. Cups, stuffed animals, and doubloons came our way. A football. A little girl across the street came over, handed my daughter a cup with some beads and told her “Happy First Mardi Gras!” Masks were thrown to her.
It was the most amazing experience of my time down here and I now know why I live with the day-to-day stress, the worries.
All you need to do is look around the street during a Mardi Gras parade, and watch the random acts of kindness and know – people here, people here are different.
The people here ARE New Orleans.
You know what I think is fantastic? I think that it is fantastic that for social studies this week, we can do a week worth of lessons on Mardi Gras. I think it is even more fantastic that going to parades tonight, MY FIRST EVER, serves as a field trip for Social Studies. We have learned the history of Mardi Gras so far this week, along with traditions, symbols, and vocabulary. We will be making King Cakes and shoe box floats. And yesterday we went and got our costumes for Mardi Gras Day! Well, Cleo and I did. My husband couldn’t find a masculine plain white mask. He won’t tell me whether he is going as Jason or Mike Myers (am not a horror girl so I have no clue who anyone is except Freddy Kruger), a mime, or some guy wearing a white mask 🙂
It is amazing to me the difference that I am seeing in my daughter. She is now sleeping through the night. She is smiling and laughing more. It is like all of her worries have been lifted off of her and she is a different person. Now, I realize I should have known this was going to happen as she did say going to that school was like being a paper back and having all of the air smashed out of it, but I didn’t realize, really, how deeply this was affecting her. I am really happy for her.
One of the things that I find absolutely interesting, however, is to see that she was getting A’s in math, but she is not at a third grade math level. What I find even more interesting, however is that some of the concepts that she should have learned last year in 2nd grade, where she also earned As, are concepts that she struggles with to fully understand. I find this really disheartening. Really, really disheartening.
So, back to basics we go, because I want her to understand these concepts so she can understand OTHER concepts. It’s important, even when she rolls her eyes at me and asks why in the world she has to review the stuff she already knows.
We went as far back as to telling time. She likes to do the digital thing, and now I know why, because she never fully grasped the telling of time. The concepts get jumbled in her head. I can appreciate this, I am 32 and cannot tell my left hand from my right. It’s the little quirks that make us, right? BUT, telling time is definitely essential because not everywhere she goes will there be a digital clock. Everywhere I go, however, I can lift my hand and find which side makes the L 🙂
Here are two poems that I had Cleo write down:
The Clock Poem
I’m in the clock crew and I’m okay!
I tick all night and I tick all day.
I’ve got two hands, I’m having a ball,
Because I’ve got no arms at all!
My big hand can move sixty minutes in one hour,
I’m the one with the strength and power.
My small hand isn’t quite as fast.
If they were in a race, it would come last!
It takes so long just to get around (12 hours you know),
It’s careful, small, and slow.
Now meet my friends that help me tick-tock,
Half past, quarter past, quarter to and o’clock.
(to the tune of “The Wheels on the Bus”)
The hands on the clock go round and round,
Round and round, round and round.
The hands on the clock go round and round.
To tell us the time.
The short hand on the clock
Goes from number to number,
Number to number, number to number.
The short hand on the clock
Goes from number to number.
To tell us the time.
The long hand on the clock
Goes around by fives,
Around by fives, around by fives.
The long hand on the clock
Goes around by fives.
To tell us the minutes.
Writing these down seemed to do the trick for her!
I am sending off my application for a homeschooling group in the area. They do a lot of wonderful things and really provide an outstanding social environment for the children. Cleo is an old woman in a child’s body. She has been through a lot of rough stuff. I want her to have kids to just be kids with, no matter the age. She needs to learn to like to get dirty and play in the mud and have fun! So that is the next challenge I am tackling.
All in all, though, the decision to homeschool has been a good one. We are all much more relaxed – Cleo not suffering from being the odd white girl out and some of the harassment that goes with that, me not worrying about Cleo all of the time.
I was going to move my blog. I have crazy ex inlaws that somehow found me and decided following my every move was benefitial. You see, I spent nine years of my life with a pretty “involved” man. He was so involved that I never had to worry about thinking for myself. He wouldn’t have wanted me to hurt myself by making something called a decision. But then I did make a decision, a big one, and packed up all of my clothes in a garbage bag and left him, starting over completely. But no one had ever done anything like that before, had courage and left the family. Since then, what I do and who I am with and where I go has become of great interest. I think they were disappointed when comments were moderated. I decided, though, not to move afterall. Why should I have to jump from home to home, literally or in the cyber world, just to find peace? I shouldn’t. I mean, I moved 1,200 miles away, what more should I do? So I am going to put my big girl costume on and take it like a woman.
We now go back to your regularly scheduled program.
I’m 32. I think that 32 is such a weird age. You now find yourself surrounded by adulthood, but yet the free-wheeling and care-free days aren’t so far removed.
I am going through this weird thing where I am trying to find who I am, defining what I am about, and deciding what I want my life to be. I realize most people probably go through this at a much earlier age, or maybe we always go through this, but for me – well, I find myself highly involved in trying to figure this out.
I think that part of the problem is that I have been taking care of people for most of my life. My mom first got sick when I was thirteen, so I didn’t go through a lot of stages that most thirteen year old go through. Or fourteen year olds. Or sixteen year olds. Or eighteen year olds. The day before I turned twenty, my son passed away and life was forever changed. I became apart of a club that no one ever wants to be apart of, a club you can’t really understand unless you are a member. Then more babies came, more responsibilities, a few more tragedies, a lot more triumphs and then I blossomed into someoe who no longer would submit to the cruel words and intentions of a man I had no business marrying or having a life with. And then I left. I started over. And then I met my Papa Bear.
At any rate, I am in this weird finding my own stage. It is hard because I am a gray person, not black and white. I’m not on thing or another, I am kind of a combination of everything. It is confusing. It gives me a headache trying to figure it out. (And no, there are no voices in my head but my own thank you very much!)
One step, right? One step!
My daughter came home from school yesterday with all of her notebooks and papers. I had told the teacher that Friday would be her last day, but apparently her teacher either misunderstood me or received the drop slip and assumed that meant it was now done. At any rate, I am not sending her today because she spent her lunch hour crying yesterday after some fucking asshole decided it would be a good day to target her and called her a bunch of names. Right now I am fighting the desire to go to the school and tell him off. And his mother, who works at the school. And the girl taht pushed my daughter down outside the day before and the other little girl that my daughter said “got in my face” the day before. Or the little girl that told my daughter to give up her supertickets, saying that the Irish killed her grandfather.
I am so relieved that she never has to step foot in that damn place ever, ever again.
“Mom,” I shouted, “we need to hurry up!”
I looked at the clock, growing impatient. I had never driven to Stillwater from Barron before, and knew how important it was that Zachary made his appointment. The day before he had his first surgery to repair his cleft lip. He was required to wear an obtainer, essentially a retainer to cover the split in his palate, and since he was sized, his mouth had grown and shifted. When they tried to put it in place, it came free, causing me to panic. The surgeon gave me a disapproving look when I didn’t know what to do, removed the obtainer from his mouth, and told me to get him to Dr. Donna immediately the next day. And that is exactly what I was doing.
“Mandy, we will make it in time. You worry too much, ” my mother said, putting a few slices of bread in a plastic bag, something she did to always be prepared for the chronic tickle that would strike her throat. She looked over at me, her eyes softened, remembering what it was like being a mother for the first time.
“I just.. Mom, it’s really scary.”
“He looks so different,” my mom said, looking up at me as she leaned over, doting on him. This is something that she did multiple times a day, unable to hold him due to being chronically ill, but refusing to not love him just the same. She started cooing at him, a smile breaking across the faces of them both, him answering her back. It always made me giggle, these conversations they would engage in.
“We really need to go,” I said again, calculating time and distance in my head.
“You are going to go see Dr. Donna today and she is going to get you all fixed up,” I said to Zachary as I held him in my arms, playing with the head of hair he was born with. He looked up at me with his dark blue eyes and smiled, as if he understood what that meant.”You are such a good boy. Mommy loves you Zachary, oh yes I do!” I pulled him in closer to me, hugging him, never having felt so many emotions at one time, but mostly felt love. There were a lot of things I wasn’t good at, but being a mom wasn’t on that list. In fact, it is one of the only things I really felt I did well, funny since having children wasn’t something I ever even considered for my future.
As we pulled away, my mother to my right and my son behind me in car seat, the day seemed so hopeful. The sun was brilliant, autumn was foreshadowing its arrival, and Zachary had made it through his surgery without incident. We drove, listening to Willie Nelson, Johnny Cash, and Hank Jr, exploring new roads and new routes. As we drove up Highway 63, woods and changing leaves surrounding both sides of the road shaded the anxiety I was feeling about getting lost, making it on time, and Zachary’s obtainer getting finished that day. I pulled over to the side of the road, an easy task with the little traffic out that day.
“What are you doing?”
“I just want to check on him.”
“Oh, Mandy! He’s fine!”
“I just want to make sure,” I said, exiting the driver’s side door, moving to the back seat, seeing my little boy looking up at me and smiling.
“Maybe I should move him facing front. I know you aren’t supposed to do that, but I can keep an eye on him that way. Never mind, he will be fine,” I debated and decided, then leaned in and kissed my little peanut on the forehead. He looked up at me, coo-ed, and gave me a big smile. It was different, him smiling at me now, after surgery than before. I remembered that smile, remembered how perfect it was, even though it was pretty perfect before.
I had never been to Stillwater before, though I recognized the name from an exit off of I-94 going into Minneapolis where Zachary’s plastic surgeon was based. Because I had never been there or driven this route, I didn’t know that when I had pulled over, we were only ten minutes from our destination. I looked down at the clock on the radio was was relieved that not only did we make it in time, we were early. I liked being early, and tried to make a general rule of arrive fifteen minutes beforehand for nearly everything.
I went to get Zachary out of the back seat and something was different, odd.
“Mom, I think something is wrong.”
“You always think something is wrong,” she quipped at me.
“No, Mom! I’m serious! Something is wrong!” I said, knowing that this was different than my normal worries. Zachary looked different, not right, not himself. I reached in to grab him and his body was limp. His mouth had an eerie blue gray color around it, sort of like when it is a clear day and storm clouds come rushing in out of no where. I put my hand to his mouth. Nothing. I put it to his nose. Nothing. I put it on his chest. It wasn’t rising and falling.
“He’s not breathing!!!!” I screamed, scooping him in my arms and running into the pediatric center where his orthodontist had her second office.
“My son’s not breathing! My son Zachary is not breathing!” I shouted at the receptionist, panic and fear now controlling everything I said, everything I did.
The receptionist ushered me and Zachary to the office across the hall, where I was met with a waiting room of children and their parents waiting to get vaccinations, physicals, and have that odd rash checked out. Immediately they took Zachary from my arms, and I told the receptionist to go help my mom come in. I ordered her to go help my mom. I needed her right now.
I sat amongst the pink dresses, pony tails, blue jeans, and buzzed haircuts when a little blond boy with a bowl haircut pulled at my pants.
“Your angel is going to be ok,” he said, looking at me and then his mother before going off to play with the Lego set that sat abandoned in the corner. I burst into tears, beginning to upset the children, and was taken to Dr. Donna’s office to reunite with my mom.
“We have to call home, ” my mom said, trying to remain calm and strong while I was falling apart.
I dialed my sister’s number, told her what was happening and heard the phone drop. Her husband picked it up, asked what happened because his wife had just fainted.
The nurse from the pediatrician’s office told me they were going to send Zachary to the hospital by ambulance and after I spoke with the police, we could meet them their. The police? I had to speak to the police? A bad lifetime movie began running through my head. A whole series of young girls killing their children had started to spring up across the country. I knew they thought I did this to him. I knew they were going to arrest me for it. I knew that I was be convicted of killing my son unjustly when all I was trying to do was get him to his orthodontist appointment. After talking with the officer, who just wanted to know what happened, I was able to convince myself that maybe they wouldn’t be making a TV Movie-of-the-Week about me, and was even more reassured when the officer offered to drive us to the hospital, given the state of shock we were in.
We were ushered to a private waiting room. The smell of the ER, the sanitized and disinfected smell, was making me feel nauseous. I had to leave, had to escape, and went outside and found salvation by inhaling deeply on a Marlboro Menthol Light 100. I tried to wrap my head around what was happening, why he had stopped breathing. I knew he was going to be ok. Zachary was a fighter. He was born a fighter. They said he wouldn’t gain his birth weight back, and he did. They said he wouldn’t gain weight, and he did. They said that he could potentially have slowed development, and they were wrong. He was going to be ok. He was.
I went back into the waiting room, pacing, crawling out of my skin. A young nurse, dark hair and just as dark framed glasses, asked my mother and I to follow her. Doing as instructed, we were ushered into a different room, being met by a plethora of medical staff, green scrubs and white jackets surrounding me, suffocating me. It was quiet. Everyone was looking at everything else, anything but me. A nurse with short blond hair came in, looking at me, then looking at everyone else.
“Did you tell her?” she asked to someone, but no one in particular.
“You mean you saved him! He’s ok!” I said with a smile coming on my face. Why else would they create this dramatic moment if it wasn’t because they had saved him and my little boy was ok.
“I’m sorry,” she said, “but your son died.”
I looked up at the clock. It was 1:58.
For anyone interested, I have my homeschool blog up and going HERE
Johnny Cash Live at San Quentin — Folsom Prison Blues
I’m Catholic, not quite non-practicing, not quite practicing. I have issues with some of the doctrine of the Catholic church and it has been quite some time since I have attended mass, though I have sought counsel with a priest when I was facing one of my more difficult times in life. My daughter has religious education free of dogma and I don’t believe that I NEED to gather with a bunch of people of my same faith in order to have a relationship with God.
Another thing that I’m not is an uber-conservative. I am pretty liberal, actually, empathetic perhaps. I don’t really subscribe to one political ideology and have voted both conservative and liberal, but I have no real ties within the religious right that guide me in my decision making process. I don’t agree with the two party system, nor do I agree with bailing out for the sake of bailing out, or voting based on what the church tells you to. That’s just me. Life isn’t black and white, and I tend to live in the gray.
After much thought, I have decided that I am going to homeschool my daughter. There, I said it out loud to someone other than my friends, so now it is real. Why did I bring up my religious and political beliefs? Because I didn’t want the basis of my decision to be lost on the stereotype that tends to follow homeschooled parents around: ultra-conservative and very religious. My decision is based upon the fact that: 1. New Orleans public school system is a disaster 2. More specifically, the Recovery School District is a disaster 3. With the exception of a handful of schools, the schools are a disaster 4. I value my daughter’s education.
Somewhere between the pro and the anti propaganda lies the truth about homeschooling. I’m a middle ground kind of girl – see religious and political beliefs – so I choose to take that as I go into this venture. It isn’t something I went into lightly. I did my research. I compared teaching models and curriculum. I spoke with people who had both positive and negative experiences homeschooling. And I weighed the pros and cons of keeping her in the particular school she was attending while in the Recovery School District, and the pros of homeschooling her far outweighed the pros of not.
There are some things that I am still researching and a few people I plan on contacting about their experiences and recommendations, but to homeschool is the final decision made at the end of the day. I do wonder, though, how many have chosen this option (if it is even an option with the fact that so many families need two incomes to survive) because the schools lack a lot of things down here, the good ones are impossible to get into and waiting lisst extend out what seems endlessly, and private school simply is not an option for them?
Another point of interest, at least to me, is that back in the small area in Wisconsin I spent most of my life, many people I went to school with have opted to homeschool their children and the education system doesn’t face nearly as many challenges as ours in New Orleans. Are more people simply deciding to take control of their children’s education?
I have decided to create another blog, though, to chronicle my adventures in homeschooling. Mostly as a reference clearinghouse for myself, but to share my struggle with the decision and the steps I have taken. I’m not only a list maker, but I’m a chronicler too. 🙂