Posted in C-Haze, life lessons

Alone

My biggest fear… ever… was to be alone.

Recently separated from my husband, I felt the need to analyze that fear. What, exactly, am I afraid of? I wanted to come up with something more specific than “everything”, which is what I would have said previously.

Here’s what I’ve come up with:

  1. Finances and Savings – in short, I suck at money
  2. Single-parenting
  3. Boredom

What I’ve learned is that all the things I’m so afraid of, I’m already doing them. Actively. I’ve been on my own for three months now. Certainly not a long time, but long enough to have survived a few cycles of bill payments, emotional ups and downs, and parental challenges (is there any other kind of parental experience when you’re the mother of 18 and a 12 year old girls? No. There is not.).

I’ve survived. Not only that, in spite of whatever mistakes I’ve made (and yes, even only three months in, I’ve made many), I’m finding this emotion I haven’t felt in a long time emerging from the dust:

PRIDE.

I’m actually proud of myself for a change. I’m supporting myself, my children, and more. By myself. People rely on me every single day, and I come through for them

every. single. day.

It’s still scary, but not in the way it used to be. Now I know I can do it.

I can be alone.

Posted in C-Haze

You never know when they’re paying attention

This is what my youngest daughter just texted me. I’ve shared with my girls how as a biracial child, adopted after a few years in foster care, and raised by a white family, I often felt “lost”.

Different.

I later learned I’ve always had family, and built on what I had back then to make what I have today. I’m never sure how much attention they’re paying. This is the stuff that convinces me they get it.

This is how I hope to build a foundation of compassion and acceptance.

Next lesson shall be punctuation! ❤❤❤

image

Posted in C-Haze

Do as I say…

Sometimes, in the realm of parenting, the whole “do as I say, not as I do” just isn’t good enough. Sometimes we have to both do and say, which can be scary as hell.

My 17 year old recently received a dual diagnosis of Lupus and Antiphospholipid Syndrome. Neither have a cure. Both are auto-immune disorders, caused by an overactive immune system that cannot differentiate between healthy cells and viruses. The immune system essentially turns on itself and starts attacking the good stuff in our bodies as well as the bad. Lupus can attack organs, while Antiphospholipid Syndrome effects the body’s red blood cells, causing excessive clotting.

She got the diagnosises after a scary week in the Pediatric Intensive Care Unit, after her doctors found a very large blood clot in her lung.

Being the rockstar of a person she is, she immediately went into activist mode when she got the news. She works hard to raise awareness about auto-immune diseases, and she wants to raise funds for research. I’m proud of her, and I’m proud of her ability to consider how these diseases affect others, and not just herself. While her diagnosis throws a wrench in some things, she has access to the top rheumatologists and hemotologists in the world, and has top-notch health insurance to boot. This will impact her, but not as much as it can (and does) impact the millions who have sub-par (or non-existent) health insurance, or have no access to qualified medical professionals.

She went to her school and requested permission to conduct a fundraiser. In response, they invited her to perform at the school’s annual variety show. Their idea was to have her showcase her fantastic singing voice, and take a few minutes to talk about these diseases, and how important research is to finding a cure.

Sounds awesome, right?

The only catch is that the variety show is in two weeks, which doesn’t give her much time to prepare. Nervous, she came to me and said she may decide to forego the performance.

As Mom, and as her biggest cheerleader, I know she can do this. I know it! 

I was full of advice:

There are many different ways to raise awareness. This variety show is definitely not the only way. I know your commitment to this has nothing to do with your decision about whether or not to perform, and I support you no matter what. That said, you have an opportunity to reach a lot of people during the variety show. When will you have that many people’s undivided attention again? Maybe not any time soon. At least consider doing it. Don’t let your nerves stop you from doing a really awesome thing.

I was proud of my spiel, and I knew she’d make the decision that was best for her. I was glad I had encouraged her to face her fears for the greater good, because that’s what living a fearless life is all about. We’ll always be afraid of something- it’s what we do in the face of that fear that defines us.

My daughter, heretofor and forever more known as “Smarty Pants” had a response. She said she would agree to the performance. She will sing a song – Michael Jackson’s “Man in the Mirror”, because the theme of looking within ourselves and making a change to bring about a better world is a good one.

This is all on one condition, however:

That I will perform with her. 

Oh, shit.

Most of my readers know that I am a hot mess, full of anxiety and fear and discomfort, and basically everything else that is conducive to being an extremely awkward human being. My awkwardness and anxiety was what I was trying to self-medicate for many years by drinking.

I finally stopped the drinking, but under all of it was that nasty anxiety and fear, just waiting for the opportunity to rear its head again. It never went away. As a result, I shy away from people in almost all circumstances. Especially circumstances that put me in the spotlight in front of a whole crowd of humans.

Oh, Jesus.

I’m sweating just thinking about it.

Not quite as well known as my anxiety is the fact that I play the piano. In fact, I’ve played the piano since I was five years old. I majored in music performance in college, oddly enough. I sing, play the piano, flute, and about 12 other instruments too. I even spent some time performing in Europe about 20 years ago.

However, when the anxiety got too bad, and the demons got to be too much to manage, I stopped.

I walked away from all of it, just like that. I haven’t performed in more than a decade, and even then it was at my own brother’s wedding. I do own a piano, and even a flute. I tinker around on them when I’m bored. Sometimes, when no one’s home, I sing at the top of my lungs to get it out of my system.

But that’s it. I don’t perform anymore. Ever. In fact, I was with my husband for about five years before I would so much as sing along with the radio in the car.

Yeah, it was that bad.

Now I find myself in a situation where the only way to really hammer home a very important life lesson to my child is to…

… Do as I Say – And as I DO.

I can’t keep my credibility if I don’t do this, because I know in my heart that the only reason I’d refuse is because of my own fears. That’s not the way fearless people live. That’s not the way I taught my children to live.

I have to do it, even as I know I won’t sleep a wink in the coming weeks. I am utterly convinced it’s the right thing to do, and it’s the only thing to do. 20 years from now, when I look back on that variety show, I know I’ll regret it if I ended up in the audience and not up on that stage with my child.

So, here I go.

 

 

 

 

Posted in C-Haze, Parenting, Personal

Parenting in Varying Degrees of Fear

The parenting of my 17 year old daughter has always been an exercise in fear and uncertainty.

As some of my readers already know, my 17 year old daughter was recently hospitalized with a pulmonary embolism (blood clot in her lung). After a gazillion tests, doctors traced root cause of this thing to a clotting disorder called Lupus Anticoagulation. This led to another, secondary diagnosis of Lupus.

Immediately placed on blood thinners, we were informed that she will always be at risk for future clots, and as a result, will be on both Warfarin (blood thinner) and Plaquenil (Lupus medication) forever.

My daughter, while absolutely wonderful, strong and determined, is also a bit of a drama queen. Therefore, she has the exact same reaction to both major and minor health issues. If she has a hang-nail, she freaks out in the exact same way as she did when she was hours from death, suffering a blood clot in her lung. This is probably why, when she first started experiencing symptoms from this embolism, that I treated her with Nyquil for two days before realizing something was not right.

When she was 12 years old, she complained (by “complained” I mean was hysterically crying and carrying on) about tooth pain, so I made a dentist appointment for her. I thought she had a cavity. The dentist did x-rays and told me to get her to an oral surgeon immediately. She had a mass in her jaw. A huge one that required emergency surgery to remove. After many tests and biopsies, we were relieved to find that the growth was benign.

I have also taken her to the emergency room no less than 10 times over the years, convinced she was dying of appendicitis or something equally dangerous, only to be told after hours of waiting and countless tests that she was merely constipated.

With this kid, one never knows.

On Saturday night, she busted into my bedroom at 1 AM, crying hysterically about pain on her right side, under her rib cage. This is the same place her clot was located. I would have panicked, had we not just been to the ER less than two weeks ago with a similar complaint, only to learn that, Hallelujiah (!!), her clot is gone. I called her Hematologist’s after-hours exchange and spoke with a doctor, who told me to give her some ibuprofen and call back in an hour if she hasn’t improved.

An hour later my daughter was fine, snoozing on the couch, while I anxiously watched her. I didn’t fall asleep until 4 AM, unsure if I was relieved this was yet another false alarm, or annoyed that this was yet another false alarm.

I live in a state of fear.

I almost missed her blood clot the first time around. I almost didn’t get her the help she needed to save her life in time to actually save it.

Then again, we’ve had countless ER doctors perform enemas to relieve middle-of-the-night bouts of constipation, convinced she was in serious trouble. Only she wasn’t.

I wish I had some sort of tool that I could reference; something to tell me that this time it’s serious, or that it’s nothing. When I’m not fearful of missing something crucial, I feel guilty. Guilty when thoughts creep into my head, and I find myself annoyed while my child stands in front of me hyperventilating about yet another ailment.

“Good grief. I can’t keep rushing this kid to the hospital!”

Almost immediately I realize I’m not being fair. If I’d had the year she’s had, I’d be paranoid about every little (and not so little) symptom I developed too.

She almost died.

That’s when I realize she’s just a kid.

A beautiful, strong, determined, genius, understandably hypochondriac kid.

Posted in blood clots, C-Haze, illness, life lessons, lupus, Parenting, pulmonary embolism

The Blessing of the Blood Clot

I had a come-to-Jesus moment recently, and it has shaken me to the core. Forgive the length, but I have a story to tell.

About two months ago, just days before her 17th birthday, my daughter was taken to a local urgent care facility. She was running a fever, was complaining of pains in her chest, and was extremely dizzy. Thinking she had some sort of upper-respiratory/flu/inner ear infection thing going on, I didn’t panic at first. In fact, I had meetings scheduled all morning, so I had my husband take her in so that I could continue working.

Roughly an hour after they left, my husband called me. He told me that the doctor had seen “something” on an MRI that concerned him. As a result, they were loading my child into an ambulance, and transferring her to the closest emergency room. This was the first time I’d heard the words that have since changed our lives:

They are concerned she may have a blood clot.

She’s 16, for heaven’s sake! She’s healthy, she’s an athlete, full of life and vitality. Teenagers do not get blood clots.

Right?

I rushed to meet her in the ER, where the doctors ordered some blood work. Specifically, something called a d-dimer test. While far from fool-proof, this test can help doctors in their quest to diagnose patients with symptoms similar to my daughter’s. If the score is below a certain number, blood clots are not a concern. If it’s higher than a certain number, it’s possible a clot has formed somewhere within the body. The higher the score, the more likely a clot is present.

My child’s score was so high, they couldn’t chart it. The test only goes up to 5,000, and her numbers were “somewhere” above that.

It was all-but certain. My daughter has a blood clot, probably in her lung- a pulmonary embolism if you want to get fancy with it.

The doctor immediately ordered a CT Scan, and while we waited for the results, I hoped against all hope that this was a fluke. That they’d come back and say, “False alarm! There’s no clot! This is nothing a little cold medicine can’t fix!” Part of me knew, however, that I was in denial.

After viewing the scanned images, the doctor told us what we dreaded hearing: our child definitely has a blood clot in her lungs, possibly two. It was either one very large clot that started in her lower lung and curved up to the mid-way point, or it was two clots. Hard to tell. Regardless, immediate action had to be taken.

As he gave us the news, I glanced at my daughter, just in time to see a single tear roll down her cheek.

I was numb.

Arrangements were made to transport her by ambulance to the Children’s Hospital in the city, as the hospital we were currently at was not equipped to treat her. The doctor explained that due to her age, she’s still a pediatric patient, and needed to be admitted to the “PICU”. Nodding my head, I went through all the motions, signed the paperwork for transfer, asked the appropriate questions, and did the best I could to keep everyone calm.

I began calling my parents, my boss, various family members to tell them the news. I felt like I was watching myself talk as I explained what I knew up to that point. Almost as if I was observing things as they happened, but was not actually participating in any of it.

My husband had briefly left the room to make some phone calls of his own, and wasn’t there when the doctor explained the need to get her to PICU by ambulance as soon as possible. When he returned, I filled him in, but stumbled on my words…

PICU

It was then, as I stuttered out that dreaded acronym, that it hit me. Pediatric Intensive Care Unit. My child could die.

I quickly ran from the room, my tears were hot on my face, and I didn’t want her to see that I was afraid. I rounded a corner somewhere, and leaned against the wall, sobbing. All I could think was that I’d thought it was the flu.

I treated my daughter’s pulmonary embolism for the last 48 hours with Nyquil. Who does that?

I tried my best to pull myself together, and the ambulance eventually arrived. Climbing in behind her, I held her hand as we raced to Children’s Hospital, trying to ignore all the beeps and buzzing sounds coming from the various pieces of equipment they’d attached to her body, monitoring… what, exactly, I didn’t know.

She spent two nights in the PICU, with a 24-hour-a-day heparin drip. Her blood was drawn every four hours, and though she was in pain, she couldn’t take pain medicine because of the impact it could have on her blood. They had to monitor her “levels” so closely that they couldn’t risk allowing her to ingest anything that could skew the test results. The heparin, I learned, is a powerful blood thinner, designed to begin the slow process of dissolving what we now knew to be one massive clot in my baby’s left lung.

I spent those nights on the pullout chair in the room with her. She could only have two visitors at a time, which annoyed various family members, as I refused to leave the room, except to pee. That meant only one other person at a time to see her. I didn’t care.

The blood thinner was so strong, she started bleeding randomly. Her nose would bleed, or her gums when she brushed her teeth. Just days before she’d been so full of life, so vivacious, but now, I didn’t even recognize her. She had huge bags under her eyes, and she looked so tiny, hooked up to all those IVs and monitors.

I felt powerless. It is my job to keep her safe. I’ve protected her from the outside world her entire life. She wears her seatbelt any time she’s in a car. I have the passwords to all her social media accounts. She has a curfew. She can’t go to parties without an adult present. But you can’t save your kid when her own body revolts against her. While I was worrying about car accidents, something was happening inside of her. It threatened to kill her, and I had no idea.

Eventually stabilized, the doctors moved her from PICU to a regular room on another floor. Now that her “levels” were where they needed to be, she was taken off the heparin, and put on another, less drastic blood thinner called Lovenox. It’s an injection, and she had to learn how to give herself the shots twice a day before she could be released.

The focus shifted from life-saving measures to finding the root cause of the clot. Blood test after blood test was conducted. Questions about family history were repeatedly asked by specialist after specialist. I felt I had failed her again. I couldn’t answer questions about family history, because I’m adopted, and have no medical records whatsoever. Genetic tests, it was decided, had to be run instead.

Finally, we had our answer.

It turns out she suffers from a clotting disorder called Lupus Anticoagulation. In addition, she has received a diagnosis of Lupus. The two aren’t necessarily related, despite both containing the word “Lupus”. This isn’t something she will heal from, it isn’t something that she can simply move on from.

No, this is life changing.

Lupus, for those who don’t know, is an auto-immune disease. It’s caused by an over-active immune system that is unable to differentiate between one’s healthy cells and viruses. As a result, the immune system is always in “fight” mode. When there is no illness to fight, it attacks the body. Specifically, the organs. Kidneys, lungs and the heart are especially vulnerable. While in “fight” mode, one can suffer various symptoms, referred to as a “flare”.

The blood clot, it turns out, was a blessing in disguise. Prior to its forming, my daughter had no symptoms of Lupus. It’s likely it wouldn’t have been diagnosed for many years, had it not been for this event. As a result, we found out about it before any damage was done to any of her organs. While there is no cure, we can treat this disease aggressively. We have a new definition of “normal”, but also know she can live a full, active and long life despite the changes we know we all need to make.

She was on the Lovenox injections for several weeks. Ultimately, due to her diagnosis, and because we now know she will need a daily dose of blood thinners for the rest of her life, the decision was made to transition her from the injections to an oral medication. She now takes Warfarin daily, along with Plaquinil to fight the Lupus.

Her clot is not gone. That will take many months. We have standing orders at the hospital to have her blood drawn every few days to check her levels. The doctor tweaks the dosage of her medication according to the test results, so we spend every other day or so at the pharmacy getting prescriptions filled, and at the lab getting blood work done…

… over and over again.

She is my hero. In two short months she has gone from lying in the PICU, hospitalized for a week, to defining a new “normal”. She has returned to school full-time, and despite missing several weeks, she’s back on the honor roll. She is also the sole student in her school district to be nominated for a scholarship to a college in our state. She has returned to cheerleading (though she cannot participate in any stunts or anything else that can cause bruising, because she is at risk of internal bleeding). She even has a part-time job as a server at a local restaurant.

With a renewed commitment to service, she has spearheaded a fundraising event (a talent show at her high school) to raise funds for the Ronald McDonald House, an organization that made our stay at the hospital so much less worrisome and dreary than it otherwise would have been.

This, she has decided, will not define her.

Watching her fight- for her life and later, for her quality of life- has changed me in ways I cannot begin to describe. What I do know is that I need to follow her lead. Renew my commitment to myself, to my husband, and to our other child, who at only 10 years old, has been yet another source of strength, determination and dignity throughout this entire ordeal.

In short, I need to be present. More present than I was before, and I need never take anything for granted again.

Many changes have already been made. More are sure to come.

I have been given the most amazing second chance with the most beautiful family on the planet. I can’t wait to show you what we all can do!

Posted in Abortion, C-Haze, Children, Current Events, Marriage, News, Off The Wall, Parent, Parenting

Abortion, Birth Control and Online Polls

Oh. My. God.

Of all the disgusting, completely irresponsible things I have seen on the internet, this is probably the worst of them all.

I just came across an article at ParentDish about the Arnold family. Alicha Arnold is pregnant, and apparently didn’t know whether or not she wanted to keep the child…

… So…

She, along with her husband, started a website. The purpose of the site is to poll the public- should they have the baby or abort it?

Mrs. Arnold, who has been married for 9 years, explains her uncertainty by saying, “I’m not convinced that I want to change the status quo… I feel that as I age I’ve actually gotten more selfish and set in my ways. I’m afraid that I will eventually regret starting a family and ‘settling down,’ as they say. I fear that the constant pressure to be the perfect wife and mother while maintaining a full-time job will eventually cause my brain to implode and lead to a nervous breakdown.”

Wow.

The Arnolds seem well-educated and financially stable. They both work in technology, and have been a couple for more than a decade. Certainly for these two upwardly mobile people, birth control was not a mystery, or a myth. They could have easily availed themselves to it, and yet they didn’t. When the inevitable happened (you see, when two people love each other, the man will stick his… well, you know where I’m headed with this…), and she got pregnant, she turned to that which she knows best- technology- to help make the biggest, most heart-wrenching, personal decision she will likely ever face.

No wait.

Allow me to rephrase.

She turned to others– strangers (!) to make that decision for her.

I am disgusted.

Ultimately, it seems the Arnolds, with the public’s assistance, have chosen to continue their pregnancy.

Truly, I have no idea if I’m relieved or not…

… This woman will be a mother soon.

How do you parent a child whose fate you once left to the public? To strangers, freaks, hackers, psychopaths, politicians (sorry- couldn’t resist!)?

“Now look, Junior! You better show some respect! If not for that 51% on my website, you wouldn’t even be here right now! Go clean your room like I asked you to!”

Huh.

I dunno, folks.

I declare I’ve seen it all.

Posted in C-Haze, Children, Current Events, Economy, News, Parenting, Policy, Politics, Recession, Single Mom, Single Parent, Wall Street

Recession: Are We Working Too Much, Or Not Enough?

By now, there are few of us that haven’t been affected by the recession in some way.

Personally speaking, while I have managed to remain employed by a company that still offers great benefits and good pay…

… Even I am feeling the burn.

Most recently my company froze our salaries, offered a “voluntary” reduced work schedule, reduced our medical coverage, and slashed our 401K match.

Everyone, world-wide it seems, is being forced to make do with less.

We need to be more productive than ever, even as our resources are diminishing.

If we slip up… we could lose our jobs… and with unemployment hovering around 8.5%, we know there are many workers that will be happy to take our places.

At home, we have to figure out a way to continue supporting our families with a smaller number of resources- be it finances, time or energy.

I have a friend, for example, who is a single mother with 2 sons.

She never got much in the way of child support from her ex, so she’s accustomed to having to get creative, figuring things out on her own.

Most recently, my friend, who already works full-time for a large company, had to get a 2nd job.

She has a bachelor’s degree in Finance from a very prestigious university…

… And now finds herself working part-time at Blockbuster Video.

That (small) additional income is buying her groceries every month.

She doesn’t get to spend as much time with her kids as she used to able to…  and now their grades are slipping… they’re developing major attitude problems… their teachers are complaining… she barely recognizes them… but dammit, the mortgage is paid.

I know this problem isn’t a new one.

For generations- well before this particular recession, people- single parents, low income families- have been struggling to learn how to get more out of less.

How do you mandate your children’s behavior, or whether they’re outside playing with friends when they’re supposed to be inside doing homework, when you have 3 jobs- all 3 of which are necessary simply to put food on the table and have gas and electricity?

So many of us are having to choose between that all-important family time and working, so that our rent is paid.

I remember trying to comfort my sobbing friend after her son’s teacher called to let her know he’d been caught stealing another child’s homework… she was also surprised to learn he was failing his classes.

“We’ve talked to your son, and he says you’re never around anymore- that you’re too busy to help him with his studies. You really need to take a more active role in your son’s life”, snarled the teacher.

“Sir, with all due respect, I love my children, and I am doing the very best I can”.

“It’s not good enough”, she was told.

They’re both right.

She is definitely doing the best she can…

… And, as evidenced by her son’s behavior, it isn’t good enough.

So what is it that we’re to do, when the very best we have, simply doesn’t cut it?