Room and Board $3950
Med/Sur Supplies $61
OR Services $10462
EPO/Drugs Requiring DET Code $7088
Self-administered drugs $1335.17
Recovery room $1026
Delivery room/labor $4190
Pro fee/ANES RN $2180
TOTAL CHARGES $39043.17 *
* Note this does NOT include Dylan’s two-week stay in NICU.
November 1, 1896: National Geographic publishes its first image of female nudity.
The picture was that of a Zulu couple from Witwatersrand, South Africa. According to the National Geographic website, “the decision to run it set a precedent to publish photos of indigenous peoples ‘as they are’”.
Tthe first images of white female nudity would not be portrayed in the magazine until 1990, in depicting Yugoslavian nude beaches.
Tuesday, October 23, 2012
What if I’d washed his robe yesterday? Although… I can still smell the grass and the beer and its been five years.
Why has Jackson started putting things in his underpants? Like the plastic bees the other day… WTH?
Dylan is grunting; Jackson is screaming. Fuck Calgon; I need a Xanax the size of my head.
Three-year-old boys CANNOT be quiet. It is against their religion.
Jackson talks to me sometimes and says, “I can’t get it out.” Apraxia is heartbreaking.
Mosquitoes are still biting. Fuckers.
Waiting for Adam to come home is exhausting.
Jackson will NOT stop talking about PopPop’s pants hanging on the clothesline.
What if Dylan is in pain?
So nervous about putting Jackson on the bus tomorrow.
Worried about all three of my boys, really.
I hate Bunny; she is pure cat chaos.
My mother-in-law never called me back today; hope she’s okay.
Haven’t heard from Adam’s dad and/or step mom since Dylan was born; hope they’re okay.
My shoulders are hurting again.
Wednesday, October 24, 2012
I’m about to put Jackson on a school bus for the very first time. He’s so excited; I’m so scared and nervous. My baby boy is growing up … fast.
Getting aggravated that the bus isn’t here yet.
Yes, I cried. And called S. Tried to call C, but she didn’t answer again. I am NOT alone.
Jackson home safe. MAD because he had to get off the bus.
Bunny has pear and spinach sauce in her fur. Serves her right.
Final appointment at USC MFM today … all clear! Yay!
Fixed the torn knee of Jackson’s pants with a monster face. Very cute and felt good to do something creative.
Really wanted to take a bath with Dylan tonight, but Adam is exhausted, Jackson is being an ass and it’s getting late. So disappointed.
God, it’s no wonder I’m bat-shit crazy. Look at my life.
I’m sick of noise — especially barking dogs and loud vehicles.
I need a car. I have no life outside of these four walls.
Thursday, October 25, 2012
The problem is not the problem. The problem is your attitude about the problem. ~ Captain Jack Sparrow
Would love to know why Jackson always goes for black/grey art supplies — paint, crayons, markers, etc.
I just said to Jackson for the first time that his brother has Down syndrome. That was weird, and I was totally unprepared.
Why, yes, I am having alcohol at 3:30 in the afternoon.
Just really realized the leaves are changing color and falling.
Friday, October 26, 2012
Adam came home in a funk last night — problems with some guy at work. He kept to himself and shut me out. I hope he can keep it together. We NEED this job.
Stepped in cat shit this morning. Woo.
Sweet Facebook note from T. Always so nice to know you’re in someone’s thoughts/prayers.
Woke with a headache this morning. Suck.
Jackson and I glued leaves to paper, then played with Halloween stickers and the dry-erase board — all with a giant teddy bear sitting at the table. I love my job.
Had a great morning with Jackson, but the tide turned when I said no to playing games because I need to do other things. Now it’s like he’s looking for trouble, and it’s really starting to piss me off.
It’s raining leaves. Hallelujah.
I’ve been meaning to sit down and write for a while now, but I always seem to find some excuse, some procrastination, some… oh, look! Something shiny! But I am putting the blinders on and grabbing the bull by the balls.
First to catch up on my last couple a posts…
The “Just Eat It” idea was to help me get my health on better track. Still a great idea, but I do not have the wherewithal to deal with it right now. Maybe after the baby is born. (This makes more sense after you read the rest of this ridiculously long post.)
My previous post, F.M.L., somewhat restored my faith in humanity. Friends — old and new — stepped forward with a helping hand. I was moved to tears more days than I can count. Adam and I have nothing to offer in return other than our gratitude and the promise to pay it forward. This reminded me of how wonderful the world can be when we all slow down and pay attention, and what I want my boys to carry forward with them throughout their lives. But it also creates a conundrum, which, again, you’ll understand better at the end of this ridiculously long post.
And now to catch you up on the latest…
Adam was able to finally receive unemployment benefits. It’s not much, but it kind of helps hold things together. Those benefits, however, drastically cut the amount of food stamps we were receiving, so now we’re eating horrible, cheap, processed foods I thought would never, never, ever be in my house again. I try to scrimp every bit I can so Jackson is still getting the best we can afford. We’re still horribly behind on bills, and once again find ourselves scrambling to keep the electricity on and trying to figure out how to come up with the money for the taxes on our mobile home, which is set to be sold in November if we can’t get the funds together.
Adam is applying for jobs every day — sometimes as many as 20 applications go out in a day. But the economy is still shite, there’s a lot of competition for jobs, employers don’t want to pay anything but expect everything in return. One company wouldn’t even accept an application from him because he said he wouldn’t work holidays. It has been nice, however, having him home to help my very-pregnant self with our three-year-old Evel Knievel wannabe.
With some help we’ve still been able to have a little fun this summer. A tank of gas gave us a lovely day trip to the beach — Jackson’s first. Scraps of salvaged wood, a donated slide, a swing and a lot of sweat on Adam’s part gave Jackson his first play set, which he absolutely adores. He LOVES being outside, riding his Gator, feeding and petting his chickens and tinkering with tools. His personality is really emerging and he is something else. So bossy, so challenging, so curious, so funny and even so sweet. He often comes in bearing gifts to “make mommy feel better” — feathers from the chickens or other birds, leaves he finds interesting, a rock, a stick. I collect them all in a bowl on the kitchen table and remind myself these are important. THIS is important. He’s talking more and more, but I’m one of the few who can understand him. He goes to speech class twice a week — once at the Palmetto Language and Speech Center and again at Lake Murray Elementary. His attention span and some of his behaviors continue to be problematic, but he is learning and at least he finally stopped banging his head all the time. He’s looking forward to being a big brother, taking time to kiss and hug my belly and always asking when the baby is going to get here.
As far as we know, Dylan Alexander makes his appearance via c-section on Monday, October 22. There have been days I thought this pregnancy would never end, but now time seems to be moving so fast. Those that know me know I struggle with bipolar disorder, depression, anxiety and more. It’s been especially bad this time around, and my OBGYN has referred me to Lexington Mental Health for help (as no shrinks seems to want to accept Medicaid patients). I’m very nervous about the appointment, but need to feel better for my boys… and myself. I dread going over the same ol’, same ol’ I’ve been over with a gazillion therapists before. I suppose some part of me hopes we’ll discover something new, something helpful this time round. Something to help me keep it together so I can be the wife and mother I want to be.
I’ve been doing a lot of reading about Down syndrome, and the general sense I get from most mothers is the grief, turmoil, worry, etc. they felt when they received the diagnosis. Guess I’m just weird, but those things really haven’t been on my mind. My baby is my baby, exactly how he is supposed to be, and I wouldn’t have him any other way. What does bother me are people’s attitudes. Some make me some kind of saint for not aborting the baby. Others act as though this baby is an extra-ordinary gift from God. Others have pity in their eyes and voices. My own mother questioned whether I’m really going to be able to handle this. But the worst? The worst is the overwhelming loneliness I feel every single day.
It seems (or feels like) many so-called friends disappeared when we announced our child has Downs. I haven’t had any sort of coffee or meal with anyone other than Adam in… well, I don’t even know when. There’s an occasional phone call, usually interrupted by Jackson wanting to talk on the phone. I try to pursue play dates for Jackson, and he usually ends up having about one a month, but because he has them so rarely he gets so excited he doesn’t know what to do with himself. (Frankly, I get a bit excited, too.) I try to strike up conversations with other moms at the playground, at the speech center, etc., but always come up short not knowing what to say or how to relate to people any more. I read other moms’ posts on Facebook and don’t know what to make of their girl’s nights out, mani/pedis, quiet time, hobby pursuing, dates with husbands… I’m happy for them, but envious, too. My days are so much the same, I often loose track of the day, the week. Mostly they’re measured by appointments — mental health, OBGYN, ultrasounds, specialists, genetic counseling, speech class, speech class, WIC classes, LICS, unemployment, Harvest Hope, low-income energy assistance, etc. I LIVE for the fun things I find to do with Jackson, and I look forward to the couple of quiet hours watching movies with Adam each night (except for tonight because I decided I needed to write and he wanted to play Final Fantasy).
And then there’s the other junk. The events I was surprised to learn I wasn’t invited to. Realizing my babe is due in a month-and-a-half and no one has offered to throw us a shower. And even worse realizing I have no one to watch Jackson while I’m in the hospital. I’ve mentioned it to the grandparents and so far have only received a half-hearted response from Adam’s mom who said she might be able to take the day of the c-section off, but probably wouldn’t bring Jackson to the hospital. Realizing our car won’t hold the two of us AND two car seats. Wondering if my husband will miss the birth of our child because he has to watch our other child. And hoping, praying, begging, pleading that none of this is because our child has Downs.
And thus the conundrum I mentioned earlier. There are obviously many people who care about our little family, but I wonder where and why they disappear. Am I just a horrible friend? Do I not show my appreciation for my friends enough? Am I guilty of disappearing, too? Is it only when it’s convenient? I feel very confused very much of the time.
I feel alone, scared, paranoid, anxious. I worry I’m not enough. That I’ll never be enough. That I can’t do more for my family. I’ve always been able to pick myself up, dust myself off and begin again. But this time? This time seems too different. I don’t know how to recover from the things I’ve learned in recent months. Most days I feel like I’ve learned nothing in these thirty-eight years. Suddenly having children — especially children with special needs — reveals the world in a new light. A new terrifying light. I’m left unsure which way to turn, which road to take.
Most folks think we eat really healthy. We do, I suppose, eat healthier than most. We rarely — if ever — eat fast food (most food is prepared at home), we try not to consume only meat and carbs, we munch a lot of organic, local, seasonal, whole foods. But our diet is a long way from perfect. Frankly, my three-year-old son eats better than the mister and I do.
I worry about what our modern-day food systems are doing to our environment, to our children, to our lives. I fret over the junk my child is introduced to away from home.
And most days I feel like crap.
All of this led to my new challenge: JUST EAT IT. I want to consume healthy eating and food habits the way I once scarfed processed foods. But the big picture is daunting — scary, even. So I’m narrowing the focus to just one little thing each week (partially inspired by my awesome sis-in-law). I hope by the end of the week it’s becoming habit as I move on to the next thing.
THIS IS NOT ABOUT LOSING WEIGHT. I’ve been there done that more times than I can count. I don’t care if you are uncomfortable with the size of my ass. I just want to take care of myself and feel better so I can take care of my family.
Also, these challenges are completely random spurred by whatever strikes me. And I’m not a physician or anything so don’t get any wise ideas about using any of this against me. Can’t believe I actually have to write that. Let me put it another way… If this paragraph confused you in any way, you’re not smart enough to be reading this blog. Please move on.
Meet my nemesis: Southern sweet tea. I was one of those stereotypical southern babies with a bottle of tea, so it’s like a life blood for me. Never really been that into sodas like some, and drinking water is a bad cliche about leading cows to water. During my first pregnancy my glucose test was borderline for gestational diabetes, so the mister cut me back from one cup of sugar per gallon to 1/2 cup. I later tried 1/4 cup, but that was just wrong on so many levels.
What better challenge for my first week, then, to DRINK MORE WATER. There are no absolutes with this little challenge of mine. I’m not declaring an end to sweet tea, coffee (although I have lost interest since being pregnant this time round), sodas and/or juice. This is simply an attempt to drink less of other beverages and more water.
Since drinking water is so foreign to me I am trying to make it as easy as possible, so I’ve been looking at different ideas for flavored water. Found some excellent ideas on Pinterest, and you can see those here.
The other part of these challenges for me is making sure that what we are consuming (or insist on consuming) is the best it can be. To that end, I also plan to switch our black tea to white. From my reading it’s my understanding white tea is less processed, has less caffeine and has more antioxidants. And buh-bye white sugar, hello organic cane sugar. Did a little reading for sugar substitutes, and organic cane sugar got the most praise for sweet tea. (I’ll be looking at other sugar substitutes down the road.)
If you’re interested, play along. Can you drink more water this week? Can you find healthier substitutes for your favorite beverages? (If I get enough interest from folks, I’ll even set up a Facebook group so we can trade ideas.)
Where do I even begin? Do I start with the beautiful dream I had the other morning and transition into all of the reasons my life isn’t what I want? Or do I begin with the joke about first-world problems like fitting your fist into a can of Pringles and transition to how angry I am at the world right now? Creative writing classes never covered these kinds of dilemmas.
So, F. M. L. because…
I am 18-weeks pregnant with my second son. I’ve been daydreaming about names, mentally decorating the boys’ playroom, planning all of the fun we’re going to have. You know. The usual hormonal pregnant woman stuff. Imagine, then, the punch in gut when my doctor calls to tell me my first trimester screenings were off, and I’m being referred to USC for more detailed ultrasounds and genetic counseling. Imagine learning the child you carry — the child you feel squirming around — may never make it to the light of day.
My blood work placed me at a 1 in 5 chance of having a child with Down syndrome, a 1 in 5 chance of having a child with Trisomy 18 and a 1 in 5 chance of having a child with Trisomy 13. One in five. A child with Down syndrome can, of course, overcome many obstacles — including the related physical health problems — to have a good quality of life. A child with Trisomy 18 or 13 may only live a few days, if they even survive gestation and birth. A genetic death sentence, if you will.
Following a very long and very intense ultrasound, I had a very long and very intense meeting with the genetic counselor. While she is an amazing counselor, I do not envy her career. Among other things we discussed what all of these things will mean for my pregnancy and afterwards, including terminating the pregnancy in the case of T13 or T18. I had no idea terminating the pregnancy can cost upwards of $8000 here in my hometown, sending most folks to clinics outside of the state. I had no idea I would ever even have such a conversation.
The mister and I decided to have an amniocentesis. Two very long needles later we wait nearly two weeks for the results. We’re still waiting. And hoping. And scared, and nervous, and all of the things two parents should not have to even think about.
I had a very severe case of food poisoning the entire month of May complete with nausea, vomiting, diarrhea, stomach cramps, fever and chills. I missed an entire month of my life. I missed time with my family. It sucked. And it took them forever to figure out it was campylobacter. A couple of trips to the emergency room for dehydration. Not being able to really take medicine because I’m pregnant. You get the idea.
Oh, and let’s not forget the insult to injury when I had to explain to the nice lady from DHEC that I do, in fact, use separate cutting boards for meat, clean my kitchen counters and thoroughly wash my pots and pans. *headdesk*
I’ve lost so many teeth, have so many broken teeth and need so much dental work (last estimate was close to $10,000). My mouth hurts every single day, I can no longer eat anything crunchy or tough or chewy, and I’m embarrassed to smile. I’ve always gone to dentist regularly, brushed and flossed several times a day… and yet I have a mouth that’s a bad joke about rednecks and British mating. One of my front teeth chipped just the other day while I was eating a sandwich, and the other looks like it’s going to break in half any day now.
The mister had been working his rear off out of town. We had missed him terribly, and longed for him to be home again. But we were so grateful for the work, for the income, for being able to *finally* get back to square with our bills… it all kind of seemed worth it. A temporary inconvenience on our road to a better life.
But then the work dried up. Text message after text message from his boss saying, “There’s no work this week.” A month later, no income and we’re right back where we started. We can’t afford to pay our bills, buy necessities like toilet paper or soap, or even get the little guy (who is doing so great with his potty training!) underpants that actually fit. Our cell phones have been disconnected, our electricity has a couple of more weeks, our auto insurance will auto-draft a zero-balance bank account in just a few days.
His boss called the other day to say that “work might be ramping up in the next few weeks.” What the hell does that mean? Even if he works a full week next week, it will be two weeks before we see a paycheck. In the meantime we get around how? On fumes? Wipe our ass with what? Magazines like in the good ol’ days?
Although I was triumphant, it took HOURS on the phone with Medicaid to secure the services the little guy needs. A mother should not EVER have to fight that hard for something as simple as speech therapy for a child with apraxia. Bullshit!!! I SAY!
I have no end to the things I need to do — from cleaning the house (It’s been months. Seriously.) to figuring out how I’m going to get Jack to his new speech classes twice a week. I have no energy, no focus, no drive. I’m just tired. I’m just fucking tired. I’m tired of explaining that I’m tired. I’m tired of idiots and dumbasses and people who seem to exist only to complain about how perfect their lives are. And I’m ANGRY. I’m really fucking angry. I’m angry that there are people in the world who think God has blessed them because they gave up their manicure money for charity and then got a raise. I’m angry that there are people in the world who don’t appreciate their children as the amazing beings and teachers they are. I’m angry that I have to fight so hard every single goddamned day just to get up out of bed and make sure my family can survive one more day. I’m angry at the idiots who have nothing better to talk about then what they’re going to wear to the high school reunion and how much weight they need to lose. I’m angry at the bastards who have turned every form of digital entertainment into a violent and sexual buffet of crap. I’m angry at the bitches who try to step between me and my man. I’m angry at Monsanto for ruining our fucking food supply. I’m angry at the people who are poisoning our skies with chemicals. I AM ANGRY PEOPLE.
And, yet, I sit here with tears flowing because I try so fucking hard to remind myself of all of the good and beautiful things I’ve seen, heard, done, experienced. I try to find the positive beauty every day. I slow down, I breathe, I meditate, I hug my son close, I kiss my husband good night and I do it all again and again and again…
Action Jackson likes to say “happy day,” instead of just “day” (one of the many things I love about him). But today was one of those truly blissful happy days.
We were able to sleep in a little this morning for the first time in forever. Took kind of a slow start, then had breakfast at The Carriage Cafe. The food was good, Jackson was entertained and the flowers were beautiful in the morning light.
We stopped at a garage sale, where I found a self-straining pot set complete with never-used percolator and three books for Jackson including one from Richard Scarry … all for $10.
We visited Grandma Meow briefly, then stopped at this weird little place we often wonder about. I snagged THIRTY-THREE gorgeous vintage children’s books for a mere $5.
We went to Publix to gather supplies for tonight’s dinner, enjoyed a semi-lazy afternoon and then feasted on Beaufort Stew made with shrimp, oysters and crab legs.
Adam and Jackson are in the shower now, after their giggling, laughing, streaking fest before hand.
It was a happy day. :)
Feeling kind of sick as I try to get things ready for tonight. Taking little man to the pediatric sleep institute tonight for a sleep study. We have done nothing but struggle with sleep for 2 1/2 years. The past couple of weeks, of course, he’s had a number nights where he’s slept peacefully through the night. I’m scared this test is going to fuck him up and he will never sleep again. I don’t like being away from home, away from the mister. Anxiety, anxiety, anxiety… I am its bitch.
I’m looking over my carefully crafted packing list to make sure I don’t forget anything. The nugget is very peculiar and likes everything to be a certain way. Being in a strange place with electrodes and things all over him and daddy no where to be found is going to be incredibly stressful. (This is the kid who had a three hour meltdown over a chair being moved from one room to another.) I feel like I’m moving in — red blanket, Thomas pillow, stuffed Clifford, Mao (his beloved stuffed tiger), his stuffed Thomas, his turtle star light thingy, his black cat flashlight… The list goes on.
And me? I get to “sleep” in a glorified recliner. Really, folks? You see pediatric patients, but offer no bed to the parents who will obviously have to accompany them? But that’s another rant. I’m exhausted, you see. Pretty much wiped 24/7. While I’m hoping my new gluten-free diet will help, I am skeptical. Going raw and vegan didn’t help the exhaustion much either.
My brain is just cooked. Overflowing, sizzling, burning with one too many tasks. If it’s not the mister and school or job hunting or paperwork or the V.A. it’s the nugget and speech therapy or early intervention or meltdowns or doctor’s visits or phone calls. If it’s not the nugget it’s the housework or money or trying to make money or trying to save money or trying to shit golden eggs. It’s trying to fix everything that’s broken, trying to clean everything that’s dirty and trying to duct tape the rest. There are days
where I feel like there’s no fun to be had, no sunshine to warm, no wants or dreams or wishes being filled. I turn inward and hide, watching for the small things to glimmer and glisten like a rock being turned and tumbled and twisted into something shiny and new. I blow the dust away and polish it with my cloth. I stand up, spread my legs for balance and throw it into the glass walls, breaking free into a new day.
It begins again.