Lullabye for Henry

I was about to go to bed tonight when I read an article that analyzed David Bowie’s last music video, “Lazarus.”  It emphasized the importance of expressing yourself as much as you can while you have time.  So, instead of going to bed with Adam, I stayed up and wrote the lullabye I’ve been meaning to write for about 9 months now.  There is music to it, but I don’t know how to put notation in WordPress, so for now, this will have to do.

<lyrics>

Sweet baby mine,
lay down your head.
The day is done.
It’s time for bed.
I hope that your dreams
are pleasant and sweet.
Time to say good night.
Time to sleep.

Sweet baby mine,
you’re growing up strong.
I’ll hold you tight now
’cause I can’t for long
Soon you’ll be too big
Right now, you’re petite.
Time to grow, my baby.
Time to sleep.

Every day
I see you change,
and it’s something to behold.
I hope that you
will always know I love you
even when you are old.

Sweet baby, mine,
close your eyes.
I’ve tucked you in
for beddybye.
Tomorrow, we’ll do
more fun things.
But now it’s time for dreams.
Time to sleep.

Time to breathe.
Time to dream.
Time to sleep.

Goodnight, my baby.
</lyrics>

I need to record this for him tomorrow.

Also, just for the record – there’s also a burping song that he hears at least 3 times a day.  I should record it for posterity too.

Just for the Record.

I feel like I was blowing smoke up my own ass in that last post. I’m tired all the time. I’ve been going to the gym two or three times a week, but Adam broke his foot, so keeping that up will be a challenge.

I’m tired of constantly beating myself up or thinking I’m not doing a good enough job. The kid’s healthy and happy. The house may never be clean again, and if I’m able to see friends ever, that’s a good thing.

If I can find curtains (forget the lofty goal of making them), I’ll be happy.

If I keep singing to my son, I’ll be happy.

If I manage to roll up a character for a play-by-post D&D Game or just jump into playing Brikwars, I’ll be happy.

But I can’t do everything all at once. And that’s fine. I’m playing the long game, and all it takes to win is to not give up.

Poetic Justice

Mommy of the Year

Well, it finally happened. I’ve discovered BoJack Horseman. I’m only 3 seasons late to the party.

I’m not sure what part of that show seems okay to watch around a baby, but truthfully, my brain is like, “It’s a non-violent cartoon. You’re good!” I’m doing my best not to binge watch — though I’m not sure it would be the worst thing in the world… just probably not the best use of time.

Whenever I watch TV these days, the kid is either on my lap, being bounced around and talked to, or is sitting on the floor in front of the TV, on his baby-safe 3/4″ thick foam mats, playing with educational toys, completely ignoring everything else. Sometimes, he sits in his rocking chair – but that’s usually when he’s sleepy.

I’ve read a lot of articles recently that say that TV for a kid who is less than 2 years old is harmful, and I have yet to see anything that convinces me that we actually need to turn it off.  The only reasons I’ve seen have been that it stops personal interaction… but 9 times out of 10 when the TV is on, I’m taking care of basic life functions. Momma’s gotta eat and use the bathroom…and sometimes, she’s gotta make the baby a bottle. He wouldn’t be getting my attention at those times anyway.

Plus, our TV acts like a big computer monitor. If I want to listen to music on Spotify (which I do, like, all the time), that screen is on. How else is he going to be able to rock out while he’s in his jumparoo?

jumparoo

Why the hell don’t they make these for adults?

Anyway, the point of this entry wasn’t to wax philosophical on screen time.  I started writing because I had all manner of thoughts and feelings while watching BoJack last night.

Who Am I, Anyway?

For those who are uninitiated to the story of BoJack Horseman: the show is about the adventures of a character actor who is living in Los Angeles years after his popular TV show ended.  It’s dark at times. It’s existential as hell.  And it makes me think about my life.

When I moved to Los Angeles in 2005, I was pretty clear on who I wanted to be.  I had an undergraduate degree in music business from Berklee College of Music under my belt, and I was attending the only law school in America that had an LL.M program in entertainment & media law. The “dream” was to work in Hollywood for the little guy — to discover the best new music out there and help make sure the artists didn’t get screwed by bad contracts. I also thought it might be fun to help people make indie movies.  And if that didn’t work out, I wanted to be an agent.  Essentially, I was hoping to be Princess Carolyn — the kind of no-nonsense workaholic that makes the entertainment industry run.

you_ve_gotta_get_you_sh_t_together__by_forty61-d955eub

Being a mommy has its perks and its annoying bits — but more often than I’d like to admit, I find myself looking at my son (who is inevitably either covered in some bodily fluid or grabbing at whatever wire he can find), thinking, “Is this really my life? Is this who I am now — the girl who wipes up poop, constantly gets screamed at, and spends her whole day focused on the happiness of a person who can’t even verbalize his needs?”

really

In short, I momentarily feel sorry for myself because my baby is a baby, and being a mommy is a tough gig.

When I was watching BoJack yesterday, though, I had to laugh a little… because I realized that, really, I’m feeling the exact same frustration that I would have had if my life had never veered off course because of MS and seizures… and there’s a sort of poetic justice to that.

I mean, entertainment attorneys are constantly cleaning up someone else’s messes and attempting to care for emotionally fragile artists who can’t adequately communicate their needs. I didn’t mean to, but apparently, I’ve been preparing to be a mother my whole life. This is pretty much what I was made for.

Put stuff back

I love my job… I love my job… I love my job.

Don’t get me wrong — the show makes me nostalgic as hell. I miss Los Angeles.  I miss my friends from there, and all of our wacky shenanigans. I miss the beach and the farmer’s markets and being able to tell myself I’m going to a bar or a party for professional reasons… and I desperately miss the smug feeling of superiority that comes with thinking, “I’m actually part of the entertainment industry.” (Translation: “I am cool, and my taste as an artist/taste-maker matters.”)

And sure, since I’m writing a blog for entertainment purposes, I could try to cling to that feeling… but let’s be real, I have a very small audience, and I’m fine with that. Happy about it even, because it means both that I have no need to be fake or to shill anything, and I know that the folks who are reading genuinely care about me.  (Love you, Mom! Love you, Adam!)

Role-Modeling Like Woah.

The only frustrating question that I haven’t been able to shake is this: How do I teach Henry how important it is to follow your dreams if my only aspirations are to see him (and hopefully his future siblings) grow up healthy and happy, and for our family to flourish?

flourish

Best as I can figure, the only way I can be the role model for Henry that I want to be is to make personal growth a priority. Regardless of how much time mommying takes up, (and it takes up most of my time) I’ve got to make time to do all the things that make me, as an individual, think I’m cool.  I can’t forget who I am.

I’ve got to keep singing and writing songs and listening to new music. I’ve got to keep learning. I’ve got to make myself practice guitar and piano, no matter how much my loss in skill feels like a punch in the gut, and I’ve got to spend the money for fabric and sew, because I want to make curtains and clothes.  I’ve got to spend more time in the kitchen cooking healthy recipes that sound delicious, because variety is the spice of life. I’ve got to set aside time to write every day, and I’ve got to keep working out. I’ve got to play more games. I’ve got to cultivate whimsy.

But more than any of that, I’ve gotta show him (and myself) that seizures shouldn’t get more attention than they deserve, and that I’m still me. I’m still awesome and fun. I can still be someone I like.

bojack-nobody-loves

7 years ago, near constant seizures ripped my life to shreds and stole my identity. I spent years on the couch or in bed, afraid of hurting myself. I stayed out of the kitchen and away from knives. I stayed away from the gym or even working out at home because I was afraid of overheating.  I stayed in the house because I was afraid of seizing in public, especially if I was alone.  Well, I don’t have the time or emotional energy for that fear anymore.  I’m done with it.

The question isn’t whether I’m going to seize or not, anymore. It’s how I’m going to handle it when I seize, randomly. It’s sitting with the knowledge that it’s going to happen almost every day, sometimes multiple times a day. It’s accepting that neither the doctors nor I have any idea what causes them or how to make them stop. It’s become about gracefully enduring them. I’ve started to think of them as long, annoying sneezes or farts.

responsible

I’ve done a lot of work to get to the point where I can continue having a good day even when dealing with post-ictal confusion. I’ve got protections in place like an ID bracelet, a playlist of songs that helps bring me back up to date, and I don’t hesitate to sit down whenever I need to. I have alarms on my FitBit to remind me to take my medicine twice a day, every day. I’ve got email reminders to eat breakfast and lunch. I’ve got more than one “in case of confusion” letter written to myself, stashed in more than one location. I’ve taken responsibility for my happiness.

So now, it’s time to stop giving the seizures more attention than they deserve and instead give that attention to myself and my family.

Sore and Thoughtful

A good kind of sore.

20151113_152709Sweet baby Jesus on a pogo stick, am I tired.

Last night, I attended my first aqua aerobics class. Sore does not begin to describe how my abs feel today. And that’s a good thing. Recovering fully from a c-section means working hard to regain some semblance of a pre-pregnancy figure. Without this sort of exercise, it wouldn’t be possible. I need to get stronger! I feel very lucky to have a yoga class on Sundays and aqua aerobics on Tuesdays that I can attend.

It’s really nice to be able to be around some new people and to challenge my body. I’m also glad that it gives Henry the opportunity to socialize with other kids at the gym’s child center. Too much time alone in the house with Mommy can’t be good for his social development.

According to the folks there, he’s always well behaved, and he likes to interact with the other babies. He only seems to cry when he’s the only infant in the baby corner.  I don’t blame him. It can’t be fun to be the only baby sequestered in the baby area when there are toddlers so nearby.

I can has hibernation?

It’s storming outside today and quite dark.  All I want to do is to give in to the MS fatigue and sleep all day — but Henry’s got other plans.  He needs my snuggles and attention, and I’m happy about that.

Fortunately, he’s napping right now, so I have a moment to write. Part of my brain says, “THEN YOU SHOULD BE NAPPING TOO!” but I took a 5 Hr Energy about an hour ago, so that’s not gonna be happening.  Hopefully, tonight I’ll get some good sleep.

Thoughts I can’t keep to myself.

But none of that is why I’m writing right now.  Honestly, there’s something on my mind.

Today, I hid a lot of friends on Facebook from my newsfeed. I considered unfriending, but decided against it because I care about these people.  I was just sick and tired of seeing folks politicizing the Syrian refugee crisis for their own egotistical gains. I was tired of seeing photos of dead toddlers and babies having washed ashore — sometimes in an attempt to remind us that not allowing refugees into our country makes us responsible for some of these deaths, and sometimes in an attempt to vilify and dehumanize the refugees for bringing their babies with them in the first place, when it’s so dangerous to travel the ocean.  Seeing those pictures made me break down and cry. And I don’t cry easily.

20151118_092343Empathy — it’s a thing.

When you have a small child who is the absolute center of your world, imagining, even for a moment, what you would feel like if you were to see your child face down in the sand, is intensely painful. It’s gut-wrenching and tragic in a way that folks who haven’t had babies can’t fully understand, because the raw emotions that exist were born with your child.  They didn’t become a part of your emotional lexicon until you protected that baby with your very life for months at a time.

To be honest, I don’t see how any parent can see a dead baby in the sand as their own child, and not want to offer hospitality to the mourning parents. I can’t grok the idea of being so cowardly or dead inside that you’d be more afraid of the potential terrorist on the boat with them than you’d be afraid of more of them feeling that sort of loss.

Maybe I’m a little jaded, since I live in a Chicago suburb.  I mean, more than 200 people died in the first half of the year alone here just from gun violence.  There were no terrorists causing that. It’s 100% good ole American murder.  And yet, it’s the exact same folks who are afraid of people who are fleeing genocide that advocate for every American adult to concealed carry a firearm.  I don’t understand that level of cognitive dissonance.

Funny enough, in March, ISIS released a “kill list” of cities that they want to see demolished, and Orland Park, IL made the list. Not Chicago, mind you, but our blissfully low-crime neighborhood. Some folks are in a tizzy about it.  I, on the other hand, am kind of tickled, since there is such a big Islamic population in our area already, and we moved out here to be safer than in “Chiraq,” where more than 50 people can die in a weekend when the Cubbies are doing well.

This whole situation just makes me shake my head. At the end of the day, the questions you’ve got to ask yourself are these: (1) Do I want to live in fear? and (2) Do I want to keep an open heart?

I think that the only way that terrorists ever win (regardless of their race, creed, or nationality) is when we become the xenophobic, violent scaredy cats they want us to be. And I refuse to be manipulated by them.

So, I’m going to continue to make sure that my son spends time in playgroups with children of all sorts of belief systems. I’m going to help contribute to the welfare of refugees through reputable charities, and I’m going to increase my efforts to become involved in my community. I’m going to go the extra mile to keep my heart open and not be afraid.

Because whether or not I do those things, pain is coming. Everyone gets hurt in life. Everyone dies eventually. Whether it’s ISIS or cancer or multiple sclerosis or high cholesterol – SOMETHING is going to get you. That’s just how life is. And it’s my job to teach Henry how to live well anyway.  Being angry and hateful and scared because some folks don’t agree with your way of life? Well, that’s just not a good option.

Homemade Mayonnaise, Pimento Cheese, & Coleslaw

This 4th of July, I got an itch to make some down-home Southern food.  Adam and I don’t have any food-bringing parties today, but we have big plans for tomorrow and Saturday – putt-putt with our beautiful niece and a party with the Biels tomorrow and backyard shenanigans with my girl, Nina, on Saturday. Both the Biels and Nina are looking for folks to bring some good side dishes, and I thought that these two favorites fit the bill.

Being the perfectionist that I am when it comes to food, I researched a double butt-ton of recipes before deciding on how to put together our side dishes. My recipes are amalgams of some of the highest rated recipes on the internet.

Since both pimento cheese and coleslaw require mayonnaise, I figured I’d go for the gusto and create homemade mayo to make the recipes even better. Besides, it doesn’t take long to make homemade mayo, and it tastes so much better than the stuff you buy premade and is better for you, because you choose the oil you use – and I’m not a fan of soybean oil, which is what most commercial mayos are made with.

Rae’s Homemade Mayonnaise

Yields 3 Cups

Ingredients

  • 4 egg yolks
  • ½ c. rice wine vinegar
  • 2 tbsp. dijon mustard
  • 1 tsp. salt
  • 3 c. extra virgin olive oil

Preparation

  1. Get out your food processor and put in the sabatier blade. (That’s the “S” shaped one that spins towards the bottom.)
  2. In the processor bowl, place the egg yolks, rice vinegar, dijon mustard, and salt.
  3. Turn the machine on (not on pulse, but in the “on” position) and as slowly as you can, start to drizzle in the oil, drop by drop until the mixture starts to look like mayonnaise, then a slow steady stream of oil can be added.
  4. Turn off the food processor.
  5. Use a flexible spatula to scoop the mayonnaise out of the bowl and into a container that is suitable for the refrigerator. If properly refrigerated, homemade mayonnaise can be used for 2 weeks.

Rae’s Pimento Cheese pimento cheese

Yields 4 cups

Ingredients

  • 8 oz. Extra Sharp Cheddar Cheese (in block form)
  • 8 oz. 2% Sharp Cheddar Cheese (in block form)
  • 8 oz. Neufchatel cheese (⅓ Less Fat Cream Cheese)
  • ½ c. homemade mayonnaise
  • 8 oz. (2 small jars) of pimentos
  • ¼ tsp. onion powder
  • ¼ tsp. garlic powder
  • ¼ tsp. cayenne pepper
  • ¼ tsp. salt
  • ¼ tsp. pepper

Preparation

  1. Get out your food processor and put on the shredding disc.
  2. Cut your blocks of cheddar cheese in half length-wise.
  3. Turn the food processor to the “on” position and, using the feed-thru hole, put in the long, thick strips of cheddar cheese, in order to shred them.
  4. Turn off the food processor.
  5. Empty the food processor bowl into the large bowl of your stand mixer, making sure to get all the freshly shredded cheese.
  6. In the stand-mixer bowl, add all the remaining ingredients (neufchatel cheese, mayo, pimentos, and seasonings).
  7. Beat at medium speed using the paddle attachment until the contents have homogenized.
  8. Empty the stand-mixer bowl into a container that is appropriate for refrigeration.
  9. Refrigerate for at least 2 hours before serving.

Rae’s Coleslawcoleslaw

Yields 4 cups

Ingredients

  • 1 bag (16 oz.) of bagged coleslaw mix
  •  ⅔ c. homemade mayonnaise
  • 1 tbsp. extra virgin olive oil
  • ⅓ c. white sugar
  • 5 tbsp. rice wine vinegar
  • 4 tsp. onion powder
  • ½ tsp. salt
  • ½ tsp poppy seeds

Preparation

  1. Get out a big ole bowl.
  2. Put all the ingredients in it.
  3. Stir til it’s coleslaw.
  4. Put it in the refrigerator for at least 2 hours and stir before serving

Hope you all enjoy!  Happy Independence Day!

Life: It has it’s ups and downs.

DOWN: I still have no MS medicine.

The monthly copayment for my Copaxone is $1,790.53. Needless to say, I cannot afford that, so I’m looking for help.

Copayment Assistance Programs for Copaxone

The Assistance Fund – They’re out of funds, but say to check back online daily.

Patient Access Network – They’re also out of funds, but say to check back online daily.

Chronic Disease Fund – must call daily to check if they have funds. I’ve already been approved. They just have no money…today, anyway.

It has been tough asking for help repeatedly and being turned down, but I’m not giving up. My neurological safety is at stake!

UP: I had a great second audition tonight.

The second audition with the band went really well tonight. I had a fun time making music with them and am looking forward to making more music in the future — especially since they are interested in hearing some of my songwriting.

I am looking forward to making music a bigger part of my everyday life. It is clearly key to my happiness.

I am also stoked that the members of the band and I have more in common than just music.  I found out tonight that most of them are attorneys, which tickles me, since I was so close to becoming one myself.

Overall, things are hopeful and good.

FML, I’m floundering.

WTF am I supposed to do with my life?

I worked my ass off in law school and then a stupid seizure disorder stopped me from passing the bar exam 3 times in a row. One time I didn’t even get to go to the test because I was hospitalized. Now I’m in a totally different state with completely different rules – and if I learn the laws here, I’m not even sure with MS that I’d be a reasonable fiduciary.

Do I say “fuck it” to the years I spent going to law school and try to go back to being an administrative assistant? Being a housewife is *not* working for me. I feel like I am trapped in a cage that I never get out of because I can’t drive anywhere. Home should not feel like a prison.

I feel like no matter how hard I try at things, I never get anywhere with my life, and that I left the best job I ever had and a city full of friends to try to do more and be more and it feels like it was the biggest mistake I ever made. But if I hadn’t gone to law school, I wouldn’t have met and fallen in love with Adam … and that would be a terrible shame.

So I guess that I’m just supremely frustrated after nearly 5 years of being completely disabled. Any words of wisdom other than “quit whining” are greatly appreciated.

Bulletproof Babies

Ever since the awful shooting that took place last week, people have been raging against each other online over gun control, over how to treat people with mental illness, over video games, over religious beliefs, and more.

At the end of the day, it comes down to this: No one wants to see innocent children killed at school.

Everyone is looking for a way to stop that from happening, and in their own way, they are grasping for a way to control an uncontrollable world and make sure it doesn’t happen again.

But this isn’t the first time that innocent children have been gunned down in school in America, and it likely won’t be the last. Crazy, stupid people do crazy, stupid things for attention.

I remember being a child in school and hearing about the shootings in Columbine. I remember the metal detectors going up at school and feeling less safe, not more safe. I remember the day I was informed that my spiked necklace was a weapon, and that I was no longer allowed to wear it. It didn’t make anyone safer that I was less fashionable. But that wasn’t the point. I stopped wearing that choker because it was better for everyone.

We hear people raging over gun control issues, and one thing that I’m not hearing is a discussion of protecting children like we protect police. If we’re genuinely talking about arming teachers with guns, why aren’t we talking about making school uniforms out of kevlar?

Because if we’re a society that refuses to disarm, we’re going to need armor.  And it’s going to need to be everywhere.