Voluntary Madness

As I sit here in my faithful, if slightly sagging recliner tonight, I am, for the moment, without my husband.

Where is he? At the bar? Working third shift? Coon hunting?

Nope.

He’s currently at the scene of two-car MVA.  That’s motor vehicle accident to the uninitiated.

My husband is part of our local volunteer fire department.  He, and his brothers and sisters, were all just sitting at home a few minutes ago, some probably in bed, when that shrill sound ripped through the evening.  The volunteer firefighter’s pager–a cold, unfeeling thing that dictates much of our lives.

As a teenager, I sometimes held volunteer firefighters in disdain.  Now, as VFF wife, I sometimes catch little snide comment and rolled eyes from people.  I know what they are thinking.  They have envisioned the Barney Fife types who just like strutting around with their pagers and giving people orders.  I guess there are some of those out there, just as there are always bad apples in every basket.

But what I have found is that these are hard-working, courageous men and women who voluntarily give up time away from their families to help others.

My husband spent days away from home while he was getting his certification.  He got further trained to drive the engines, because he is a naturally talented big truck driver.  He trains every Monday evening with his Station.   Mostly, though, he is always ready to literally run out the door and to the rescue of people in need.  It might be late in evening, like now, or it might be one or two in the morning.  Sometimes he’s back in an hour–sometimes not for five or six.

Sometimes he has to comfort people who are afraid, and hurt, and maybe even dying, all while acting as though he himself is not afraid.

He has been “toned out” during cookouts, birthday parties, holidays and family gatherings. He has missed his dinner and eaten a bowl of cereal, or maybe nothing at all because he was too exhausted to eat.

He has made lifelong friends, and so have I.  He has had struggles and frustrations and some scary situations, which he always downplays to me because he knows I worry.  He trusts his brothers and sisters with his life, and holds their lives in his hands.

So, take a minute to be thankful that there are men and women out there like my husband, who don’t do what they do because they are getting paid, or getting glory, or really even getting any recognition at all.  It’s easy to dismiss a volunteer firefighter because he’s the same guy you see mowing his lawn every week, or shopping in Walmart.  But make no mistake–he’s a hero.

And this one here, he’s mine.

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Spoiled (not so) Rotten

You have to be careful when you are talking about other people’s rotten kids.

Even to define what it means to have a “good” kid or a “bad” kid can be tricky.  It’s broad terminology.

Regardless, I couldn’t help but ponder a comment I heard about an obviously “bad” kid who had grown into a bad man.  The comment was that his grandparents had raised him and they had “always bought him anything he wanted.”

There was tons of heavy implication within this comment, laid on with a skill that only the elderly Southern lady possesses.  I, being skilled in interpreting this clandestine dialect, understood what was really being said.  The boy had been “spoiled” by his grandparents and so had turned out to be no good as an adult.

This got me thinking.  Does buying too many things for our children turn them into bad people?  I have always seen the clichéd images of the over-indulged child throughout my life.  The greatest and most recent, of course, being Dudley Dursley.  This is archetype of the “bad” child.  He has too much of everything.  He is bought too much, fed too much, simply given too much. As a result, he (or she) is spoiled.

I’ll be honest.  This comment hit me on a personal level.

I have always been guilty of overbuying.  I’ve never mortgaged my house to buy my kids something, but if it was in the budget and there was something cool they wanted, or even something cool I thought they might like to have, I probably got it for them.

I love technology and gadgets, so we always have the latest iPhones and iPads.  The Boy likes Nike shoes, and I got him a pair.  I guess I just never really thought of it as a big deal.

Now, The Boy is 16.  He got his first job this summer and is working hard.  He does very well in school.  So, we got him a car.  It’s cheap, it’s small, and it’s not at the top of anyone’s dream car list, but it is new, it gets great gas mileage, and it is his.

So I ask, have we been doing things wrong?

If I go by what society (and some family members) tell me, then we have spoiled children.  But the funny thing is, they don’t act like spoiled children.

Obviously, my daughter doesn’t really fit into a simple mold, be it spoiled or not spoiled or anything else, but my son is pretty much a typical 16-year-old boy.  However, I happen to think he is an exceptional 16-year-old boy.

He is compassionate and kind.  Little kids are drawn to him like moths to a flame.  He pretends like this annoys him, but I know he loves them and it brings him joy.  He is one of the most generous people I have ever met.  I honestly don’t think he has a selfish bone in his body. He works hard and is so smart.

I don’t think it is what we buy our kids that makes them who they are.  I think it is what we teach them.  You could buy them things and they could be little brats.  However, you could also buy them things but still demand that they treat people with respect, and do their chores, and behave a certain way.

Ultimately, it really isn’t anyone’s business what you do or don’t buy for your kids.  I think we are all probably guilty of overbuying, especially in this modern age of “stuff.”  But the responsibility of raising respectful, responsible children remains the same.

It seems to me blaming the “stuff” is taking the easy way out.  It’s easy to blame something superficial like “spoiled” rather than say, “his grandmother let him speak disrespectfully to her all of the time” or “he was never responsible for anything around the house.”

So yes, I think you can spoil your children.  But I think you spoil them not by giving them too many material things, but by not giving them enough of what we all need to be decent adults:  discipline.

What do you think?

An Open Letter to Teens

Dear Teens:

You don’t know shit.

Oh, I know, I know.  You think you know everything. I am (not so) sorry to be the one to tell you that, in fact, as I said, you don’t know shit.

Also, no one in this world owes you anything.  Did you get that? NOT. ONE. THING. If you want things, buy them.  That requires money, which requires a job, which generally requires some sort of skill set, along with basic personal hygiene.  Some of you seem to be struggling with this.

It’s all pretty basic.  Take a bath.  Brush your teeth.  Make eye contact when people talk to you.  And, God help us all, smile.  

Here is another pointer for you–learn English.  Like, for real.  I’m not trying to be mean, but you kind of sound like morons.  You can’t spell, you can’t speak, and to be frank, you’re making us look bad in front of the whole world.  Try not to add “uh” to the end of every word, especially if you are doing so in a particularly annoying, whiny voice.  Examples: stop-uh, don’t-uh, look-uh, what-uh. (For those of you struggling to understand, just draw those words out.  Come on now, draw them out niiiiiicccceeee and loooooonnnggg and force the sound through your nose and then tack that “uh” at the end. Got it?)

Lastly, get over yourselves.  Look around.  This may come as a shock to you, but there are other people in the world besides yourselves. Who knew, right? Take a moment to realize that your words and actions might have some effect on someone other than you.

I give you these words in love, because I don’t want to see you make the same mistakes I made as a selfish, stupid teenager.  I want you to realize that there are certain decisions you only get one chance to make. I want you to look around an appreciate the value of the other people in your life.  Some day they might not be there.  And they love you.

We all love you.

P.S. You still don’t know shit, though.

P.P.S. The duck face and the kissy face in every picture look absolutely ridiculous.  Really.  I mean, people are making fun of your behind your back.  It’s that bad.  Stop.  Please.


 

Driven to Insanity

My son is 16 years old.

For those of you who do not have children, this number may mean nothing to you.  It may not strike fear into your heart.  It may not ignite inside your soul the devastating fear, the agonizing terror that lives in the heart of every parent.

My son is nearly ready to get his driver’s license.

I stalled the inevitable by making the boy take Driver’s Education.  That gets you a break of approximately $0.00000004 on insurance.  (Incidentally, I think it is crap that insurance is more for a boy than for a girl.  So much for equality, right?) However, in spite of my many attempts to pretend that my children are still small, the boy is nearly ready to get his driver’s license.

He will be able, according to the law of our great state, to operate a motor vehicle on his own.

(Who made these laws? Someone without children, I guarantee.)

I consider myself a very adaptable person.  In fact, it is one of my strong suits.  I’m not one of these people who get bogged down by the fear of change.  I laugh at those people.  Ha!  But someone I find myself ill prepared for my son to drive.  It isn’t just him–all of his buddies are also driving.  A few of them are older than my son and have already received their operators license.  A couple of them drive themselves to school every day. I still visualize these kids as the same ones who couldn’t tie their shoes without assistance, and they are out on the same roads as you and me, with no adult supervision, in vehicles capable of many thousands of dollars of personal property damage.

God help us.

The worst part of it all is that I’m not sure if I’m upset because my son is 16 years old and driving (and he is a good driver, very cautious and law-abiding) or if I’m upset because this is just another reminder of my own impending geezer-hood.

I am not ready for this.  I myself identify as a cool young person.  I listen to cool music and drive too fast (in a minivan) and have tattoos and all of the other stuff that makes people cool.  But how can I be a cool young person when a human being that I grew inside of my own body is now old enough to operate a motor vehicle?

Okay, I’ll tell you the truth.  I’ve been sly about it and pretended like it was about so many things that it wasn’t.  It isn’t really about my son.  It isn’t about him driving.

It’s about the fact that I’ll be 40 in a couple of days.

You read that right.  I will be forty years old.  Conceivably half way through my whole entire life.  If I’m lucky, that is.

I cannot stand to hear about people having midlife crises, especially men with the sports cars and the blonde mistresses and such.  But honestly, I have to seriously ask myself if I’m not in the throes of a midlife crisis right now.  Why else would all of this be hitting me so hard?  What other explanation is there that the contemplation of my life and the life of my son and his friends should cause me such distress?

I’m sure the wine has nothing to do with it.

Regardless, my son is sixteen years old, and getting ready to get his license.  No matter how much I piss and moan (and drink), time just keeps on slipping by.  I thought I had lots of time.  I used to complain about how slowly time passed.

I’m sorry, okay? I’m sorry.  I didn’t know.  I take it back.  Just please, please slow down a little.  They can drive now, so let’s just take a breath.  Let’s take a minute to get our bearings.

Let’s realize how precious our time is, and how much we take it for granted, okay? I swear, we’ll do better from here on out.

Okay?


 

(not so) Happy

I have unlocked the secret to happiness.

Now hold on a minute.  Don’t just roll your eyes and walk off. Come back here! I’m serious.  I know the secret to happiness.

Are you ready to know the secret? Okay, wherever you are, go to a mirror. Close your eyes.  Stand in front of the mirror.  Take a deep breath.

Now, open your eyes.

See it?

You are looking at the secret of happiness.

For those of you who cheated and did not go to a mirror, I will give you the answer.

It’s you.

You are the secret to happiness.

Now, before you feel an overwhelming sense of responsibility, don’t misunderstand.  You are not the secret to everyone’s happiness.  Just your own.  Do you follow? I’ll say it plainly, with bold font, so you can get it.

You are the secret to your own happiness.

In my never-ending observation of people, I see everyone constantly searching for happiness.  They look for it in people and places and things.  They want happy lives and happy relationships and happy jobs, but they are let down over and over.

I spent more years than I am willing to count trying to find my own happiness in other people.  I was continually disappointed.  I was chronically disappointed.  Why? Because I thought someone else had the key to my happiness..  I placed impossible expectations on the people around me, and then held it against them when they couldn’t deliver.

I’m not sure what finally clued me in.  I can’t pinpoint one big “ah-ha” moment when I realized I had it wrong.  I think I just got tired of being such a drag.

Every morning I get up, and I don’t have what  people would  consider  a “fun” schedule.  I have to get my people out of bed and feed them and medicate them.  The daughter can be down right uncooperative.  Sometimes I have to hold her arms down with my leg so I can get her medicine in her.  That is not fun.  But I make jokes about it and laugh and accuse her of trying to kill me.  I sing songs and make faces to try to keep her from getting too mad.  When it’s finished, I make a big show of wiping my brow and then that’s that.  When she has a seizure, we sit together and bitch about it for a while.  It makes us feel better.  Then it’s over.

What if I wanted to make a different choice?  What if I decided to lament the difficulty of my life? What if I fussed at my daughter for her extreme hard-headed-ness (which she gets from her father) and started my whole day off on a sour, negative note?  What if I wanted to look at all of the things wrong with my life, all of the hard things that just don’t seem fair, and what if was mad or sad about them? Well, life around here would certainly be different, wouldn’t it?

No one can make those choices but me.  I can blame who I want.  Is it fair that things are the way they are?  Maybe not.  But guess what?  There’s not one damn thing I can do to change things, fair or not, and how in the hell does me being miserable help anyone?

Misery loves company–we’ve all heard it.  It’s true.  Misery is catching.  The beautiful thing, though, is that happiness is catching, too!

In our marriages, our relationships with our children, our jobs, every single aspect of our lives, we make the decision of how we are going to live our lives.  It breaks my heart to think of how much of my life I have lost being miserable.

Laughter is such a part of our lives now.  We have to laugh at ourselves and our lives–we just have to.  I don’t think we could survive day-to-day if we didn’t.  Look around yourself.  If you are with people, or, God forbid, if you are a person who can’t laugh at yourself, seek help immediately.  Put your head between your knees.  Call 911, something.  Just bail out.  You’re drowning.

You’re drowning in our society’s notion that happiness is something that is owed to us, that it is something therapy and medication can provide.  We have convinced ourselves that others should mold themselves into the shapes that make us happy.

We are deluded, and what’s worse, we are miserable.

If only everyone could decide to be happy.  If only everyone could see that each life, each relationship, each job, each person, can be a part of what our happiness is all about.  There is so much that is beautiful in even our hardest moments, so much that we should celebrate.  Even when things are hard, we can deal with them and move on.  There is so much to be thankful for, so much to appreciate.

So much to be happy about.

Go back to that mirror.  Look yourself directly in the eye.  Don’t take any bullshit.  Who is standing in the way of your happiness? Can you see them?

Now, what are you going to do about it?


 

 

 

 

 

Spongebob for President

I was raised by my grandmother.  Not just any grandmother, but THE grandmother.  Let me tell you, she is a believer in voting.  She thinks voting isn’t just a choice we have as Americans, but an obligation.  She especially thinks this is true of women, because we had to fight so hard to get the right to vote.  She thinks it is an abomination that so few people turn out on election day.

I think she’s right.

I have voted since I was 18.  It’s a big deal to me.  I vote in local elections, presidential elections, even elections for dog catcher.  If there is an election, I’m there.

But this time, I may be in trouble.

Here’s the thing: I have absolutely no idea who to vote for.  The reality is that I don’t really want to vote for any of the current presidential hopefuls, but there’s this voice in my head that won’t stop saying “Not voting is the same as a vote for the opposition.” Fine.  I get it.  But from where I’m sitting, everyone is the opposition.

Let’s all be honest here.  Have you looked at these people? I don’t even know what to say about Donald Trump.  Literally, I have no words.  Hillary Clinton just reeks of scandal and lies.  I wouldn’t trust her if she told me the sky was blue.  And Bernie Sanders? God bless him, I think his heart is in the right place, but apparently no one realizes that this country is not in a position to implement socialism, even “democratic” socialism, or that the power really lies with our senators and representatives.  (As an aside, it breaks my heart to see all of these 20 and 30-somethings who think that a presidential candidate will actually do what he promises during his campaign.  Oh, to be so young and naive again!)

I’m not getting into my political affiliations here.  I refuse.  That isn’t my point.  I just want to know what the solution is when you don’t like any of the political candidates.  I believe in voting.  I hate to hear people say they don’t vote because it doesn’t make a difference anyway.  I HATE it. It is our privilege, and yes, our obligation as Americans, to vote.  But here I am, getting ready for a primary election, followed by a general election, determined that I will not cast a vote for any of the current candidates.

Really this post is just a plea for help.  Someone help me.  I’m drowning.  Am I the only one who feels this way? Does anyone else want to cry when they see the current candidates on television? What do we do? There’s only one solution as far as I can tell.

A write-in.

Spongebob 2016.

Roman (Catholic) Mythology

Easter of 2013 was a big occasion for me.  I was confirmed into the Roman Catholic Church.

Interesting for a girl who was raised by a Baptist minister, right?

I won’t use this post to go into what lead me home to Holy Mother Church.  What has troubled me nearly every day since my confirmation is how the Church is perceived in our society.

If you live in New York or Boston, or any fair-sized city, I guess, this may mean nothing to you.  However, when you live “in the country,” as I do and always have, Protestantism, in one form or another, is pretty much the only religion you know. When you say the word “Catholic,” you can almost watch as the misconceptions about the Church roll across people’s minds.

So, rather than get into a theological debate about the finer points of Catholicism, which I am NOT qualified to do, I want to share with you some of the things I have heard about the Church, and how I know they are not true because of my own personal experience. Here we go:

1. The Catholic Church worships Mary.

The short answer to this, of course, is no, we don’t.  Stick with me on this “worshiping something besides God” thing, because it seems to be a recurring theme.  The most important thing I can say about this accusation is that Catholics worship one God, and only one God.  Further, we believe in God as three persons–the Father, the Son, and the Holy Spirit.  Since we also believe in and follow the Ten Commandments, the first of which is not to worship anyone but God (I’m paraphrasing), to worship Mary (or the Pope, or a saint) would be a mortal sin and a heresy, and as such, would endanger our souls to Hell.  So we don’t take this lightly.

However, that is not to say that we do not love our Mother.  She is the Mother of God, and, as such, we honor her with highest honor.  She was the first Christian.  She is a model of how a Christian should behave.  Since another Commandment tells us to honor our parents, we feel pretty sure the Mother of God is worthy of honor.  And yes, we invoke her intercession in our prayers.  More on that later.

2.  Catholics aren’t Christians.

In simplest terms, Christians are followers of Christ as the true Son of God, and as part of the Holy Trinity.  That is exactly what Catholics believe, and so, yes, we are Christians.

3. Catholics worship The Pope

Please see number 1.  We don’t worship our Holy Father.  We do not think he is divine.

We do, however, acknowledge him as the Earthly leader of our Church.  He is the number one Catholic.  Have there been corrupt popes?  You’d better believe it.  Peter himself, the first head of the Church, denied even knowing Christ.  History buffs could tell you all kinds of shenanigans popes have been up to.  Here’s the thing–the Pope is, after all, only a human.  He is placed at the head of a Church that is also made up of–you guessed it–humans.  In his own actions, he is not infallible.  However, we do believe that in Church doctrine he is infallible.  His being the head of our Church is no different that your pastor being the head of yours.  And so what if we all get very excited to see him? Good grief, we live in a society that does nearly worship celebrities! Consider William and Kate, and Brangelina.  Don’t even get me started on how people acted towards The Beatles and Elvis.  And we can’t jump up and down and cry when we see our Holy Father? Baloney.

4. Catholics pray to Saints/Statues/Pictures/Other Graven Images

Wow, this really is a recurring theme, isn’t it?

Anyway, again, see number 1.  We don’t worship anyone but God.

Do we pray to Saints? Yes we do.  But not in the way you think.  The way we talk to the saints is the same way you talk to your brothers and sisters in Christ here on Earth.  Heck, you probably ask someone to pray for you almost every day, don’t you? Why? Well, when we call upon the saints, we are asking for them to pray for us.  These are holy people and why shouldn’t we believe that they can hear our prayers and pray for us? All of us need all the help we can get.

Do we love pictures of saints and statues and all of that good stuff? You bet.  Let me ask you this–do you keep pictures of a dearly departed loved one? Why do you do that? Do you keep mementos from trips and vacations and baby clothes and locks of hair and who knows what else? I’m sure all of those things are perfectly acceptable to you.  Why wouldn’t they be.  So, why can’t I, as a Catholic, have a painting of a saint whose life speaks particularly to me? Why can’t I have a picture of The Blessed Mother to remind me that she understands what a mother’s suffering for her child truly is? These things are mementos, and reminders, of people who Catholics love.  It has nothing to do with worship.

5. Catholics think a priest can take away their sins.

This one seems more complicated on the surface, but it really isn’t.  No, we do NOT believe a priest can take away our sins.  God’s mercy takes away our sins.  However, for that to happen, Catholics do believe you need to confess those sins, and yes, you confess to a priest.  The priest is acting en persona Christi, which means in the place of Christ, there in the confessional.  And yes, the priests prays the prayer of absolution over you, but let me tell you, it is Christ who is there in that confessional, and it is Him who absolves you of your sins.  The priest is basically your tour guide through the most wonderful experience you can have as a member of the Catholic Church.

6. All that bowing/crossing yourself/incense, etc., is just weird. 

If you’re not a Catholic, I’m sure seeing what goes on in an actual Mass would be very intimidating to most.  All of the bowing and kneeling may seem strange, and to some, even sacrilegious. Let me tell you, I’ve been to a lot of church services in my life, and I have never felt more in the presence of God than I do during Mass.  We bow and kneel because we believe the Body and Blood of Christ are on that altar.  Speaking things in unison causes everyone to participate in Mass together.  You are doing something, not just sitting there.  You are practicing your faith. It is revered as a holy and sacred time and place.  Shouldn’t the worship of God be treated with such reverence?

 

I’m going to stop for now.  I’ll leave you with this:

I’m not trying to make everyone become Catholic (although if you want to, good on you!) What I’m trying to do is make people realize that Christians are cutting their own throats by quarreling among themselves.  It’s about time we let go of misconceptions and outright lies and just remember that we are all called to follow Christ’s example.

Can’t we all just get along?

 

(not so) Super Hero

When you’re a teenager, you spend a lot of time figuring out exactly the path you want your life to take. You’re going to be married (or not), have kids (or not), have such and such career, live here, work there–on and on.

Life sure is funny sometimes, isn’t it?

I think one of the biggest rites of passage from the teen years into actual adulthood is when you start to realize that the things you wanted and the things you actually have really have nothing to do with each other.

Me? I wanted to be a marine biologist. I was going to work and live between Alaska and Hawaii, studying marine mammals. I would become a leading expert in the field, maybe appearing in National Geographic occasionally just for variety. I didn’t much care if I was married or not, and I certainly didn’t want any kids to slow me down.

I am not a marine biologist, incidentally. I am a caregiver.

What happened? Life, that’s all.

This isn’t a biography. I hold no delusions that the boring tale of my transformation into the ultimate soccer mom I am today is of any interest to anyone. It will suffice to say I am married with two children. Also, and the full time caregiver to my sister. Oh, and my 14 year old daughter is also permanently disabled, and I’m her caregiver, too.

My sister and my daughter’s disabilities are very different. My sister has CP, and my daughter has an undiagnosed neuromuscular disease. Sister is non ambulatory. Daughter ambulates a little, but poorly, and is a fall risk because of seizures.

So, you may be asking, what’s my point?

As with most of my writing, there is little point. (Sorry.) But I heard something the other day that seemed insignificant at first, then began to gnaw at my mind and churn around in there (along with the lyrics to hundreds of songs and a vast library of movie quotes) until I finally had to write about it.

Someone called me a superhero.

Let me start by saying I wouldn’t be caught dead in tights or a unitard or anything else that is the going fashion among the superhero community (you should be grateful–trust me.)

Mostly, though, the comment left me feeling a little disappointed in the way caregivers are viewed in our society.

As a full time, total care caregiver for two people with disabilities, I can assure you I am many, many things, some good and some (not so) good, but a superhero isn’t one of them. I’m not even side-kick material.

Superheroes don’t get tired. They are strong and fearless and they always save the day and solve the problem. They always beat the bad guy. Superheroes swoop in, set everything right, and fly away to do whatever it is superheroes do when they aren’t superhero-ing.

I am painfully non-super.

Tired doesn’t even begin to describe the level of physical and mental exhaustion I can experience. I’m physically strong (I like to think I have a dependable, pack-mule type build), and I act fearlessly when necessary, but I am afraid almost all of the time. Sometimes I feel like a total emotional weakling.

The biggest difference is that I can’t really set things right or beat the bad guy. Oh, I can manage day-to-day life pretty well. Everyone is clean and fed and warm and (hopefully) happy. I can change a diaper with one hand. I can administer meds in all sorts of fun ways, and I can load, strap, unstrap and unload a wheelchair in Olympic-gold-medal-worthy fashion.

What I can’t do, though, is beat the real bad guy.

I can’t make Sister or Daughter’s disabilities go away. We manage symptoms. We fight fires and try to prevent new ones, but I can’t make Sister walk, or Daughter talk, and I surely can’t make their lives “normal.” I can’t swoop in and destroy all the things that are basically just mean–things that take and tighten and weaken and hurt and sting and crush. Hell, I can’t swoop at all.

I would also be willing to bet that superheroes never have days when they are almost drowning in self-pity. They probably never sit morosely on the side of the bed and think, “why does everything have to be so hard?” They never have secret, hateful moments when they wonder what happened to those dreams and plans they had when they were teenagers. They certainly never have weak moments when they wonder if their lives will ever be anything more than an endless cycle of cleaning and feeding and medicating and entertaining. Obviously, I don’t have super powers.

I’ll tell you what I do have, though: a very important job.

My job is far more important than any role I could have ever played in the marine mammal world. I don’t think I’ll every make it into National Geographic, but I’m okay with that. Sister and Daughter rely on me to take care of their physical needs–that’s obvious. That’s what caregivers do, right? Provide physical care? Yes, but we do so much more.

I am the link between my people and the rest of the world. I make them aware of the world, and, more importantly, I make the world aware of them. I advocate for them, and I make sure others treat them fairly. I work very hard to make others see Sister and Daughter for what they are–a 36 year old woman and 14 year old girl. Each unique. Each wonderful in their own way, just as we all are.

In short, I am their voice.

Somehow, this seems infinitely more important than wiping a bottom or administering a pill. It is the heart of what we do, the very essence of caregiving, and we are doing it with plain, boring, every day skills. We aren’t superheroes. We are sisters, and brothers, and mothers, and fathers, and wives, and husbands, and children, and so many more. We are caregivers.

And, if you ask me, that’s pretty super.

anxietygirl

(not so) High Times

Below is the body of a recent letter I wrote to our Senator.  I wanted to post it so everyone could be aware of what is available out there for those who think they are running out of options.  I’d love to hear your thoughts on this!

 

I am writing to you from Fayette County. I write concerning my daughter, a fourteen-year-old with profound special needs.

This letter is not meant to be a medical documentation, so I will spare you the details of her lifelong struggles. For the purpose of this letter, suffice it to say that she has severe epilepsy. Further, she has drug resistant epilepsy. She has anywhere from one to ten or more seizure per day. If she is standing when they strike, she falls, the result being that she is frequently bruised and bumped. The situation has degenerated over the past year to the point where she is required to wear a helmet and a gait belt while at school. She also has to be in her stroller or an adaptive chair for a large part of her day. Although this is for her safety, it is discouraging, because she has limited mobility as it is, and she needs to be walking as much as possible.

There is, however, hope. In the past months, I have studied the benefits of medical marijuana to individuals with various forms of drug resistant epilepsy (also called intractable, or refractory epilepsy.) I have also learned, with some disappointment, that West Virginia has not yet joined the more than twenty states who have put some sort of medical marijuana bill into place.

Must West Virginia always be at the back of the class? With the current administration’s insistence that healthcare for all is of the utmost importance, how can such an opportunity be overlooked? I have to sit here and watch as states all around us, even the Commonwealth of Virginia, put even the most basic laws into effect regarding medical marijuana use. Meanwhile, my daughter’s quality of life continues to diminish while I wait for everyone to get over the archaic notion that using marijuana medically, even in alternative forms such as oil and under the supervision of a physician, is “using drugs.”

I can tell you all about “using drugs.” My daughter, though just fourteen, uses more drugs than the Whites of Boone County. She has to have routine blood work to make sure the drugs aren’t reaching toxic levels in her body. What differentiates her, of course, is that her drugs are “legal.” Or, to put it another way, her drugs have gone through all the appropriate channels to line all of the appropriate pockets. What’s worse, even with all the drugs, she still has daily seizures.

Senator, what can we do about this? I don’t know your position yet on this issue. From what I can tell, it is just now coming to the forefront of our thinking in West Virginia, as I myself have only come by this knowledge over the past few months. Still, I say it’s well past time that we start looking into the future of caring for our most vulnerable citizens. My daughter, though limited, is as entitled to her dignity and quality of life as everyone. Our beautiful state should work in partnership with other states, not to mention the federal government, to make these types of options available to people in need.

I know there are no guarantees. Perhaps CBD oil (a form of medical marijuana) will not help my daughter’s seizures. Perhaps it will be like so many of the drugs that she has tried over the years, and will work for only a short while. However, I would like to be given the opportunity to find out, without having to break the law to do so.

I know you are but one man, but every forward movement requires that first push. Please, Senator Laird, consider helping make that first push. I am willing and able to help in any way possible. I hope to hear from you soon.

 

Sincerely,

Janice F. Bostic


 

 

The Split Second

I don’t know about where you live, but lately around here there seems to have been an increase in the number of child-related tragedies.

I won’t rehash them one by one.  They were depressing enough the first time around. Suffice it to say that some terrible, strange accidents have happened to some small children around the state.

Accidents aren’t really what this post is about, though.  What got me thinking was looking at and listening to some of the comments that people make about these tragic accidents.  Without fail, the parenting abilities of the parents involved with these accidents are always called into questions.  Sometimes people are downright cruel, saying that some people shouldn’t have children and that how idiots should be sterilized so they can’t reproduce.  You hear such mature, helpful advice as “hang them” and “arrest them for neglect.”

I have no doubt that some of the horrible things that happen to children are the result of bad parenting.  But then, these things aren’t really accidents, are they? What about the horrible things that happen that really are accidents? We are so quick to judge, so quick to pass sentence and shake our heads at these poor, foolish parents.

Haven’t we all been that foolish parent?

Nobody wants to admit it, but we have all had our less-than-stellar parenting moments.  The difference between me and the woman whose son died in a tragic accident is little more than pure luck.

Children are fast, and I don’t think any human on Earth can honestly say they are prepared for every possible danger scenario in the life of their child.  We try.  God knows we do.  We baby-proof and use car seats and door latches and we hover and wring our hands.  But sometimes stuff still happens, doesn’t it?

I know as the mother of two I’ve had some close calls.  One that stands out in my mind is the time my then two-year-old son found the switch that operated the automatic door we had so my sister could go in and out in her wheelchair.  The house was baby-proof.  But I noticed I didn’t hear my son, and when I went in search of him, I found him standing on the back porch looking through the door which had closed just as easily as it had opened.  He was so shocked that he had just stood there, and in reality, no more than a minute could have gone by, but what could have happened? What if, instead of stopping and looking back through the door, he had kept on trucking and went out to the road? Or down in the woods? Or, or, or, if, if, if.  I was lucky.  I grabbed him and mentally calculated the number of years that had been shaved off of my life, but that was it.  We were fine.

Another time, we were in DC seeing the sights.  We got on the elevator to go down to the Metro.  We were packed on there, and somehow I got shuffled behind my sister’s wheelchair.  My son was in front of her chair.  The door opened, and he stepped off.  For some reason, everyone else just sort of stood there.  The door started to slide shut, with me inside and my four-year-old son standing on the platform by himself.  I literally climbed over the back of my sister’s chair and hit the “door open” button.  Everyone shuffled off then, and I joined my child on the platform.  Yet another year or two off of the span of my life.  It could have gone down very differently, and been much worse.  Or, or, or, if, if, if.

So, what about you? Have you had those life-shortening, sphincter-tightening moments of parenthood? I know you have.  We all have. Go ahead, tell me about it.

I won’t judge.

 

 

 

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