Shadow Dancers

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We are here, behind the curtain.

Silent.

You see our shadows, dancing.

We’ve shown up, put on our costumes.

We look just like you. You, who get to dance on the other side of the curtain; the side with the bright lights.

But we aren’t just like you.

We are different: we dance with chronic pain. We dance with chronic illness.

We smile and arch our arms, though our insides ache in misery.

Twirl. Our muscles contract and shudder. We hide the limp; turn the stumble into a pliè.

Our breath comes in harsh, heavy gasps. The wheezing cannot be heard over the blaring of the music.

We drop. The hardwood is cool against our feverish skin.

From the audience, it appears a graceful movement, part of the dance.

Struggle to stand on pointe. Our lungs heave with effort.

But we balance.

Careful. Concentrate.

Exhaustion fights us, threatens to drag us down. Heavy eyelids, unfocused.

We argue: I can’t give up. I have to do this. I will succeed.

We are dancers.

We win the battle, but are left with dark bruises. Scratches.

Scars.

Tears form a drowsy trail down our faces.

It’s okay though. Nobody can see our streaked makeup, back here behind the curtain.

The tempo has slowed.

Our bodies are battered, worn, and aching to rest.

Drenched in sweat.

I can’t do this. It’s too hard. It hurts.

Ah, but we must.

And then…then they come.

Pirouetting .

Closer and closer.

We link together. Arms crooked, elbow in elbow.

Together, we stand.

Together, we bow.

And we continue to dance, here in the shadows.

It is beautiful here, on this side of the curtain.

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Buckets of Love.

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The Ice Bucket Challenge.

We’ve all seen it. For weeks, photos and videos of individuals, businesses, and teams having a bucket of freezing cold water dumped over their heads have been clogging up our Facebook news feeds, and taking over our Twitter.

And people are complaining.

Of course they are.

Why wouldn’t they? After all, they log in to social media to find funny pictures of cats, recipes for The World’s Greatest Fried Green Tomatoes in the World, and to passive-aggressively stalk people they dislike.

They don’t want to see something serious. Photos and videos of a simple act that could actually change and better the lives of thousands of suffering people aren’t entertaining. Prolonging the lives of strangers who simply want to stick around long enough to watch their kids grow up? Come on now, that doesn’t show me how to create a quick and budget-friendly accent for our dinner tonight. What a waste of time! And let’s be honest, seeing people take time and money from their own lives to do something for a charity…well, it’s uncomfortable.

Because we know we probably could donate $10, and dump some of that cold water from our tap – water we pay for, water that comes from our own wells– on ourselves. We could help.

We simply don’t want to.

Instead, we claim it is a shame to waste water for this “stupid idea”, and point to kids in Africa who don’t have clean drinking water.

True. That is sad. Perhaps we could box up our buckets of ice water and send it to them?

No? Yeah. That probably wouldn’t work out all that well.

Of course, if one wanted to, one could do the Ice Bucket Challenge, and donate money to those kids in Africa who need clean drinking water.

But…but then we wouldn’t have enough time to scroll through Grumpy Cat pictures! Or see what kind of foolishness the ex is posting!

Naw. Better to sit tight in our well-cushioned computer chairs and complain.

It’s easier that way.

We can keep our $10 for a super-sized Big Mac meal.

I wonder if these naysayers have ever been diagnosed with a disease that results in shortened life span? Or a chronic disease that limits average daily abilities? An illness that brings more and more excruciating pain with each sunrise? Do these people understand how it feels to look at the future and see hospitalizations, needles, tests and treatments, pills and medical equipment?

Not to mention the astronomical medical bills that come with chronic disease.

I wonder if the naysayers understand what it’s like to feel bleak and alone in a disease, but struggling to look ahead with hope anyway?

And what if that hope looks like a bucket of ice cold water?

Let’s not be silly, people.

Oh hey! Look…Grumpy Cat doesn’t like his tuna sandwich!

Man. That cat cracks me up.

Why I Cannot Stand.

I’ve tried to keep my mouth shut. Really, I have. I know what I believe, and I know what scares me about the Hobby Lobby ruling, and I’ve thought about it in the wee morning hours, when my kids were asleep and my brain was wide awake: thinking, worrying, swirling with anxiety.

I’ve ventured out a couple of times to comment on the posts of friends who’ve asked for opinions, and been promptly slammed for my stance. And I back away: because I dislike confrontation, because I dislike being yelled at, because I dislike being told off in all caps.

Because, I think, I’m not changing anyone’s mind. They aren’t even listening.

So I shut up. But then.

But then, the uneasiness in my gut is weighing ever more heavy. My own silence is what is keeping me awake at night.

I am a Christian, and despite what you may have heard, I do not spend my free time ripping hijabs from the heads of local Muslim women, or seeking out tattooed people to tell them they are going to hell.

I believe in God. It’s a decision I came to on my own, as an adult. As I’ve grown older, I believe even more. I don’t hate anyone. I work hard to be kind and compassionate. I believe as humans, we all hurt, we all cry, we all grieve. We all love. And we have to respect one another. We have to help one another. I have friends of various religions or non-religions, and I respect their beliefs. Doesn’t mean I understand or embrace their faith (or non-faith as the case may be), but I get that they base their lives and their decisions on what they truly believe is right. And, you know, it’s cool, brah. We’re still friends. Let’s hug. There. Okay. That’s enough of that. Seriously man. Let me go. I ain’t big on hugs. Personal space, buddy. I said PERSONAL SPACE!

And I’m pro-life. I know, right? It isn’t the popular thing to be these days. But there you have it. This is a core belief I’ve held all my life: before I even understood what sex and reproduction really meant, before I became a Christian, before I became a mother. And I don’t picket abortion clinics, screaming at weeping girls. I’m not Westboro. I’m not out to hurt anyone. Seeing people in pain causes me an ache down deep in my gut, and I’m compelled to show love and friendship and try to figure out some way to help.

Simply put, I’m pro-life because in my soul, I believe every life has a purpose.

On the surface, these two things together should mean I am ecstatic about the Hobby Lobby ruling.

I’m not.

And I cannot stand with them.

Once we open a gate that says a Christian employer can deny medication coverage based on personal belief, it’s going to flood. And this is where it gets personal.

I’m a mother of four, and three of my children live with Primary Immunodeficiency Disorder (PIDD). Their “trashcan” diagnosis is Common Variable Immunodeficiency, which means they lack the part of their immune system that fights bacteria and viruses, and they don’t make antibodies to illness or vaccinations. What does that mean? In short it means, let’s say you have strep throat. It feels terrible, and you get some antibiotics from your Friendly Neighborhood Physician, chill on the couch watching some crime drama marathons on TNT for a couple of days, and then you feel better. The next week, you encounter someone with strep again, but you don’t catch it…because you’ve made antibodies. People with a primary immunodeficiency can’t do that, so they can catch strep, watch their TNT marathon, get better, come across someone the next week who has strep, catch it again, watch another TNT marathon, rinse, lather, repeat. Now, if someone with PIDD has strep or some other illness, and comes across another contagion, maybe pneumonia or staph or some other form of Big Bad Ugly, their weakened immune system can become overwhelmed. Sometimes, this will end in more infections. Sometimes, this can end in organ failure. And sometimes, this can end in death.

There is a treatment for PIDD, and it’s called Intravenous Immunoglobulin, but in Acronym Land, it goes by the handle IVIG. IVIG is a plasma by-product, and is given via infusion usually monthly, sometimes weekly, and it provides sort of a temporary immune system. It contains antibodies from the donors (thousands and thousands of donors) and helps to keep the Big Bad Uglies at bay. This treatment is necessary for health, for quality of life, and for, you know, not death. As in, the opposite of.

I’ve been taking my kids to a hospital for IVIG about an hour and a half away, every three to four weeks, for over eight years now. Each bottle of this treatment costs about $7500, times three children. Every month. Currently, we have insurance that covers this life-saving treatment. But that could change.

There are religions, such as Jehovah’s Witnesses, that eschew accepting blood products of any kind. They don’t believe in blood transfusions. Which means they don’t believe in IVIG infusions.

I brought this up in a conversation I was rather hesitantly involved in yesterday. I asked, “What about my family? What if this happens, and my kids no longer have coverage for their infusions because of this ruling? What about other families like mine, who rely on blood products to survive?”

I was told it was a far-fetched idea.

I was told we are such a small fraction of the nation, it couldn’t really be considered.

I was told even if that happened, even if it turned out my husband was working for someone with this belief system and they could refuse to pay for my kids’ treatments, then the ruling would still be right.

I asked, “But what if that happened, and my children died?”

The answer? Those are only three lives. They could die, and that would be our own fault, because we COULD have found a different job, or we COULD have chosen to pay for the infusions ourselves. My kids’ lives are not the problem of religious freedoms. We’re moving forward here! Taking back our nation!

Maybe. I guess to the world at large, those three lives don’t change much in the grand scheme of it all.

But those three lives are my whole world.

Paying cash, one infusion, one month, for three of my children would cost around $30,000. That is more than we earn in a YEAR.

My husband currently works for a temp agency. Third one in the last twelve months. He is a hard worker, and he has a degree. But jobs are hard to come by around here, and if you’re lucky enough to find one, you’d better be damn grateful for your paycheck.

But let’s say he did. Let’s say he left the job and found another. Through another temp agency? You have to put your time in before you are offered health insurance. How long is the time frame? Depends. Some places, it’s three months. Some, it’s six. My husband worked one place last year that required a year of work before time was in.

Three months? Six months? A year? In that time, my kids could catch influenza followed by some variant of staph and POOF! just like that.

Gone. My children. My babies.

But I know. It’s just three lives.

You know what, though? The actual incidence of Primary Immunodeficiency is approximately 1 in 500. And that’s a lot more than just the three that live with me. (I have a deficiency as well, an Immunoglobulin G Subclass 2 Deficiency. I’m not worried about my insurance coverage or treatments, though. Don’t be silly! I haven’t had health insurance in over five years.)

I would never have imagined this type of lifesaving treatment could be denied, especially to children.

I would never have thought the religious beliefs of a company could rule over the medical treatment necessitated by a physician.

I would never have thought a company could “fake” a religion, simply to save costs because an employee’s chronic illness was costing too much.

But now, the gates have opened.

They’ve opened against three of mine.

And that is why I cannot stand.

Mother Love, Mother Guilt

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This article originally appeared in “I.G. Living” magazine, August/September 2013 issue.

Somehow, it always comes down to the mother.

The first person a teacher asks to speak to when a problem arises. The first person a physician discusses a medical issue with. The person the other mothers – at soccer and baseball practice, at Scouts meetings – whisper about when she leaves the room.

That child is too thin!

That child is too heavy!

That child is too short!

Sad, shaking heads. Collective sighs. Satisfied hands clutch their Starbucks cups. Tiny sips of double mocha light foam cappuccinos.
And then….

What is she doing wrong? Why doesn’t she do something to fix this? Surely, she must see The Problem.

Surely.

Surely, the mother sees the problem. She drops off her child with a smile and a wave, heads back to her SUV to rest her head on the steering wheel. She closes her eyes tight, unable to un-see the differences. The Problem. The fact that her child is unlike his peers; there are glaring discrepancies in the size of her child and the size of the others.

What have I done wrong?

Why can’t I fix this?

Surely, she sees what the other mothers see.

And she sees the other mothers. She notices the way they turn their heads – just slightly – when her child joins the group. Are they checking? Checking to make sure their children are still superior? That The Problem hasn’t somehow affected the perfection of their offspring?

She sees them catch one another’s eye; each in turn. A fraction of a second – barely that –but still.

Enough.

She hears the artificial coating in the invitation that comes just a little too late; the unnecessary volume in the equally unnecessary reassurances: “He’s just a late bloomer” or “He’ll slim down, once he hits that growth spurt”.

She hears the words that are implied, but not stated out loud.

“He’ll be fine, as soon as you figure out where you went wrong, and fix it.”

Judge and jury.

They cannot understand how desperately she loves him. How completely she would sacrifice to be able to fix The Problem.

Mother Love equals Mother Guilt.

She knows something isn’t quite right. This isn’t her first child, she knows what is normal, average….and she just knows…something is off.

Not quite sure what it is. Just…something. But…how could that be? She was so careful. No drinking, no smoking. No caffeine. Forty weeks of carefully measured actions. Vegetables. Milk. No under-cooked meats. Never missed a prenatal appointment. No drugs during the birth.

She breastfed. They said that would be better. Safer.

Well-child check-ups are passed with flying colors. Hesitantly, she voices concern to the physician.
Her worries are blown off, like an insignificant kite detached from a string. All mothers worry. You’re just overly tired. All babies are different. Nothing is wrong.

Nothing is wrong.

Nothing.

Except…..she knows there is something. But she lies to herself. She convinces herself all is well. When the worry rears its head in her throat, lodging there like a child’s bouncy ball, too big to move either up or down, just…stuck – she busies her mind. Turns up the TV. Calls a friend to gossip about nothing. Furiously cleans. Invents extra errands.

Until The Event. The Dreaded Something that changes the minds of those who dismissed her initial concerns.

The day the doctor sits her down and speaks to her in slow, easy to understand words. Do you understand? Yes, she understands. She looks him in the eye, forces herself to listen. She listens, but the pain in her chest makes her hold her breath. Oddly, she remembers another time when she felt this way. When was it? She searches her memory.

First grade. On the playground, standing on the swing with daring. Clutching tight at the chains biting into her fingers, she calls fearlessly to her friends, “Underdog me!” and sails away, up, up, up into the sky.

She falls. Hits the ground with a sickening thwack. She lies there, so much pain in her chest and back she cannot breathe. She wants to cry out, but the air in her chest sits heavy as a block of ice. Unmoving. She is frozen.

This feels like that.

Labs. Tests. Appointments. Prescriptions. Journals. Journals! Logging every bite that passes the child’s lips; every new symptom; every night that passes without rest; every unusual behavior. Furiously, she scribbles into the journals…here, she is certain, the answer will appear. A pattern will emerge, and whatever it is that has caused the Dreaded Something will show itself. She will eliminate it, and everything will be okay again. She will be able to breathe again. She misses the way it used to feel, back when she could breathe without even thinking about it.

She cannot find the pattern. She cannot find the answer.

Sitting in the tiny exam room that has become far too familiar, she waits. The door creaks open, the physician enters and takes a seat on the little spinning stool. Small talk. She eyes the folder in his hand. She does not want to talk. She only wants the magical answer, the sword that will slay the Dreaded Something. She considers snatching the folder out of his hands. She smiles. She waits.

Finally, the answer comes. The block of ice in her chest somehow spreads to her shoulders, arms, head. She feels the slow freezing of her entire being. Her teeth begin to chatter.

It is her fault. The doctor says it jokingly. “Isn’t it always the mother’s fault?” He chuckles. It lingers in the air, like hot breath on a frigid day.

Here it is, then. The answer. She has done this to her child; her body, her genetics, have caused the Dreaded Something. She cannot take it away. She cannot fix it.

Doesn’t he see how much this hurts? He laughs and says he should create a Frequent Flyer parking spot just for her family. Does he understand she would willingly give her home, her arm, her leg – her life – anything, anything to fix this?

Mother Love equals Mother Guilt.

Sometimes at night, she hears the muffled strains of guitar strings being plucked and closes her eyes, listening, a smile on her lips. Her child has struggled so much; lost so much; grown so much. Still, her child finds beauty in small things; a brightly colored bead, an unusual sunset; a new song.

She hurries dinner in order to make it on time to school conferences. The teacher laughs as the report card is handed over, “If only I had a classroom of kids like this one, I’d be happy to come to work every day!” She feels a warmth, a melting in her icy chest. She straightens her shoulders and takes a deep breath.

Her heart constricts, her chest hurts as she watches the IV insertion. She rubs her child’s back, watches as his eyes follow the hands of the nurse. Alcohol rub, gauze pad, syringe, bandage. He knows the routine; he knows once every item is in its own place, the poke will come. He sits up tall; back and tiny shoulders straight. He does not blink or turn away. He watches with detached curiosity; he holds his breath, scrunches his nose – there, it’s over. All done. He smiles and cracks a joke, his nurse laughs. She kisses his little head and tells him he is brave. She thinks to herself he is stronger than most grown men.

A child is bullied on the playground. A new child, and something about him makes him stand out. Something isn’t quite right. He has a Problem. She watches as her child leaps in front of him, arms outstretched. Chin up, eyes blazing, her child protects him. The bullies back off. Arm slung about the new child’s shoulder, her son offers to play with him, introduce him to some nice kids. Her eyes water with liquid pride. He has endured great pain, but he is such a compassionate boy. The Champion of the Underdog….he will not stand for hateful words or unkind actions.

She looks at the children she is raising. Kind-hearted, compassionate children. Honest, cheerful. Funny. Creative. Loyal. These things are also her fault. She loves them with an intensity that burns the ice.

Mother Love equals Mother Guilt.

Light a Candle in the Darkness

Light a candle in the darkness

Yesterday, through a Facebook post of a dear friend of mine, I learned that March 1st is “Disability Day of Mourning”.

It’s a day set aside to mourn those lost to mothers who have suffocated them, fathers who have shot them, sisters who have stabbed them.

And we hear this in the media, these horrific stories, about the mother who simply could not take it anymore, or the father who only had his child’s best interests in mind.

The media says this is acceptable, because the murdered child had a disability.

Because it’s a justifiable homicide if a person is “hard to handle”.

Because it’s a justifiable homicide if the parent or caregiver is “fatigued.”

Because it’s a justifiable homicide if the parent or caregiver “doesn’t know what else to do.”

Justify it all you want, it’s still a parent or caregiver murdering a child or adult who trusts them.

Imagine this:
A child is sleeping, trusting that even though a day has been rough, he is in a safe place with a parent he loves and who he expects loves him. Precious little head on a red pillow, with a Spiderman blanket tucked perfectly around his tiny form. Startled, he begins to drift awake and hears a shuffling sound in the room – steps: one, two, three, four….it’s here! Next to his bed! Frantically, he scrunches his eyes shut, pulls the blanket tighter around his body. He knows it must be a monster; he hears heavy breathing; he feels the monster hovering above his bed. Finally, he can take it no longer and opens his eyes.

And the last thing he sees is his beloved mother, pillow in hand and bearing down on his precious little face.

He fights. Tries to scream. His hands flap wildly around the bed.

But the pillow is big, and his mother is stronger than he could ever hope to be.

Firmly, she holds the pillow over him until his breaths become ragged and his heartbeat slows.

She waits. Waits for her little boy to stop thrashing. For silence. For peace.

She thinks back several years, to when she was pregnant and this same little boy lived in her belly. She remembers choosing colors for his nursery, reading stacks of books about pregnancy and breastfeeding and child-rearing. She recalls the doctor handing her perfect little boy over to her; there had been screams and sweat and blood and the pain had been unbearable, but now it was worth it, because he was finally here, and she was his mother and would do anything in the world to protect him.

But this wasn’t what she wanted.

And she pushes the pillow down harder.

Silence. Peace.

Now, I’m a pretty laid-back person, easygoing and tolerant. I can generally see another person’s point of view and respect it, even if we disagree. I realize every person on the planet has had unique experiences that have brought them to the place they are currently in, and if nothing else, I can empathize with them and their choices.

I may not understand, but I sympathize and feel compassion for their situation, and will try to help them and show support.

But this? THIS?

No. This, I cannot understand. I cannot sympathize. I cannot feel compassion.

Not for these people.

I sympathize and feel great compassion for their victims, but not for the monsters who would murder a child or adult who depends on them. Trusts them. LOVES THEM.

But the supporters and sympathizers cry, “Parenting a special needs child is HARD. You don’t understand.”

Oh buddy. I understand. I know.

Because I’ve lived it.

Three of my children live with a chronic and life-threatening medical condition. Toss a few behavior issues into the mix, and you’ve got a recipe for disaster.

Right?

Wrong. I’ve got a recipe for beauty. Art. Creativity. Compassion. Love. Trust. Laughter. Life.

I understand it can be exhausting.

There have been times I have wept from the exhaustion of it.

I understand it can be hard.

There have been days when I have slammed my fists against a brick wall in frustration and anger.

I understand it may, occasionally, feel hopeless.

And years ago, in our very darkest times, I have thought If I could kill myself to make them well, I wouldn’t hesitate, wouldn’t stop to think, I would do it in an instant.

I haven’t thought like that in a long while but I can guarantee you, if a physician came to me today and told me this was true, that the only way to help my children live long and pain free lives was to kill myself, I’d stick my head in the oven in less than a second. No second thoughts. No hesitation.

Know why?

For the same reason I would never leave a burning building without getting my kids out first.

Because I love my children more than my own life.

I always have, since the moment I learned of each pregnancy; I’ve loved them more than myself.

Every second.

Even when it’s hard.

Even when it’s beyond painful.

Even when I’ve been hit in the face by a solid object thrown at me during a child’s meltdown.

Even when they say they hate me.

Even when I nearly lost my youngest child after a major surgery.

My first thought is never about me, or how I am affected.

My first thought has ALWAYS been for my child.

So I cannot understand how so many people can make the choice to assassinate their own offspring.

Their children.

Their children.

Further, I cannot for the life of me understand those who SUPPORT the ones who do so.

There should be outrage.

There should be media coverage that does NOT blame the innocent victim.

There should not be love and acceptance for the murderer.

March 1st is “Disability Day of Mourning”. Below is a list of just SOME of the people murdered by their family or caregivers – the very people who should have been their advocates and protectors. I never knew her, but Shylea Myza Thomas was a 9-year-old little girl who lived the town over from me. I remember back in 2009 when her story broke, and I cried in my living room as the coverage spilled from ABC 12 news, showing pictures of a beautiful little girl who had been murdered by her aunt and stuffed into a storage unit – like a bag of old trash — so her aunt could continue to recieve her disability checks.

•Tracy Latimer, 12 years old, gassed by her father in 1993

•Charles-Antoine Blais, 6 years old, drowned by his mother in November 1996

•Casey Albury, 17 years old, strangled by her mother in 1997

•Pierre Pasquiou, 10 years old, pushed into the sea by his mother in 1998

•Jim Helm, 27 years old, killed by his mother in a murder-suicide in November 1998

•Daniel Leubner, 13 years old, burned alive by his mother in September 1999

•James Joseph Cummings Jr, 46 years old, stabbed to death by his father in the institution where he lived in November 1999

•Justin Malphus, 5 years old, beaten and drowned by his mother in April 2000

•Gabriel Britt, 6 years old, suffocated by his father in March 2001

•Johnny Churchi, 13 years old, strangled by his mother in 2001

•Mark Owen Young, 11 years old, poisoned and then pushed off a bridge by his mother in a murder-suicide, September 2001

•Brahim Dukes, 18 years old, starved by his stepmother in December 2001

•Lilian Leilani Gill, 4 years old, strangled by her adoptive mother in March 2002

• Mitchell Dickson, 10 years old, slashed to death by his mother in June 2002

•Dale Bartolome, 27 years old, killed by his father in a murder-suicide in July 2002

•Jason Dawes, 10 years old, suffocated by his mother in August 2003

•Maggie Caraballo, 38 years old, beaten to death by her sister in August 2003

•Angelica Auriemma, 20 years old, drowned by her mother who first tried to electrocute her to death in 2003

•Scott Olsen, 29 years old, starved to death by his sister in December 2003

•Eric Bland, 38 years old, starved to death by his sister in March 2004

•Scarlett Chen, 4 years old, drowned by her mother in July 2004

•Patrick Markcrow, 36 years old, drugged and suffocated by his mother in March 2005

•Tiffany Pinckney, 23 years old, locked in a basement and starved to death by her sister and brother-in-law in April 2005

•Sarah Naylor, 27 years old, shot by her mother in a murder-suicide in September 2005

•Ryan Davies, 12 years old, drowned after his mother caused him to fall off of a bridge in a murder-suicide

•Christopher DeGroot, 19 years old, died of severe burns after he was locked in his parents’ apartment alone during a fire in May 2006

•Katie McCarron, 3 years old, suffocated by her mother in May 2006

•William Lash III, 12 years old, shot by his father in a murder-suicide in July 2006

•Lakesha Victor, 10 years old, starved by her mother in August 2006

•Marcus Fiesel, 4 years old, wrapped in heavy blankets by his foster parents and left in a closet to suffocate while they went out of town in August 2006

•Ulysses Stable, 12 years old, throat slit by his father in November 2006

•Brandon Williams, 5 years old, poisoned and beaten to death by his mother in March 2007

•Criste Reimer, 47 years old, thrown from a balcony by her husband in 2007

•Jared Greenwood, 26 years old, died of infected bed sores after being left in place and neglected by his mother in 2007

•Francecca Hardwick, 18 years old, locked in a burning car with her mother in a murder-suicide in October 2007

•Naomi Hill, 4 years old, drowned by her mother in November 2007

•Shellay Ward, 7 years old, starved and neglected by her parents in November 2007

•Maxwell Eyer, 2 years old, beaten to death by his father in December 2007

•Xiao Fei, 20 years old, poisoned and suffocated by her mother in 2008

•Calista Springer, 16 years old, chained to a bed and abandoned in a fire by her entire family in 2008

•Courtney Wise, 17 years old, starved to death by her mother in February 2008

•Ethan Scott Kirby, 3 years old, beaten to death by his mother’s boyfriend in August 2008

•Jacob Grabe, 13 years old, shot by his father in 2008

•Tom Inglis, 22 years old, died after his mother administered an overdose of heroin to him in November 2008

•Christian Clay Jenkins, 14 years old, given an overdose of oxycodone by his father in 2008

•Kyle Dutter, 12 years old, shot by his father in a murder-suicide in 2008

•Lexie Agyepong-Glover, 13 years old, left in a frigid creek by her mother and died of drowning and exposure in 2009

•Terrell Stepney, 19 years old, poisoned by his grandmother in a murder-suicide in 2009

•Jeremy Fraser, 9 years old, died of recurrent leukemia after his mother withheld the medication that would have saved his life in March 2009

•Shylea Myza Thomas, 9 years old, starved to death by her aunt, who then hid her body in order to continue to collect money she received for Shylea’s care in April 2009

•Pamela Camille Hall, 59 years old, stabbed by her son-in-law in April 2009

•Lloyd Yarbrough, 62 years old, fed an overdose of prescription medication through his feeding tube by his wife in May 2009

•Jeremy Bostick, 11 years old, gassed by his father in 2009

•Peter Eitzen, 16, stabbed by his mother in July 2009

•Tony Khor, 15 years old, strangled by his mother in October 2009

•Betty Anne Gagnon, 48 years old, tortured to death by her sister and brother-in-law in November 2009

•Walter Knox Hildebrand Jr, 20 years old, died of a seizure induced by his brother’s physical abuse in November 2009

•Laura Cummings, 23 years old, raped and tortured to death by her mother and brother in January 2010

•Jude Mirra, 8 years old, forced by his mother to overdose on prescription medications in February 2010

•Ajit Singh, 12 years old, forced by his mother to drink bleach in February 2010

•Gerren Isgrigg, 6 years old, died of exposure after his grandmother abandoned him in a remote area in April 2010

•Leosha Barnett, 17 years old, starved to death by her mother and sister in May 2010

•Glen Freaney, 11 years old, strangled by his mother in May 2010

•Payton Ettinger, 4 years old, starved by his mother in May 2010

•Christopher Melton, 18, gassed by his mother in a murder-suicide in June 2010

•Rylan Rochester, 6 months old, suffocated by his mother in June 2010 because she believed him to be autistic

•Kenneth Holmes, 12 years old, shot by his mother in a murder-suicide in July 2010

•Zain Akhter, 5 years old, and Faryaal Akhter, 2 years old, strangled by their mother after she first tried to get them to drink bathroom cleaner in July 2010

•Emily Belle Molin, 85 years old, hit and run over with a car by her son in August 2010

•Rohit Singh, 7 years old, beaten to death by his father in September 2010

•Zahra Baker, 10 years old, murdered and dismembered by her stepmother and perhaps her father in October 2010

•Chase Ogden, 13 years old, shot by his mother in a murder-suicide in October 2010

•Karandeep Arora, 18 years old, suffocated by his parents in October 2010

•Donald Parojinog, 83 years old, starved by his daughter in January 2011

•Chad Jackson, 25 years old, starved and neglected by his mother in July 2011

•Julie Cirella, 8 years old, poisoned by her mother in July 2011

•Joseph Conant, 11 years old, and Nacuma Conant, 33 years old, shot by their father/brother in July 2011

•Noe Medina Jr, 7 months old, thrown 4 stories by his mother in August 2011

•Benjamin Barnhard, 13 year old, shot by his mother in a murder-suicide in August 2011

•Jori Lirette, 7 years old, decapitated by his father in August 2011

•George Hodgins, 22 years old, shot by his mother in a murder-suicide in March 2012

•Daniel Corby, 4 years old, drowned by his mother in March 2012

•Malea Blakely-Berry, 16 years old, starved by her mother in June 2012

•Matthew Graville, 27 years old, tortured and beaten to death by his half-brother in July 2012

•Melissa Stoddard, 11 years old, suffocated in restraints that her father and step-mother routinely used in December 2012

•Robert Gensiak, 32 years old, starved by his mother and sisters in March 2013

•Alex Spourdalakis, 14 years old, poisoned and stabbed by his mother and godmother in June 2013

•Matthew Hafer, 28 years old, poisoned by his mother in July 2013

•Marian Roberts, 57 years old, shot by her father in a murder-suicide in August 2013

•Jaelen Edge, 13 years old, poisoned by his mother along with his sister Faith in September 2013

•Tamiyah Audain, 12 years old, starved, abused and neglected by her cousin in September 2013

•Dameian “Luke” Gulley, 14 years old, strangled by his stepfather in November 2013

•Randle Barrow, 8 years old, drowned by his mother in a murder-suicide in December 2013

•Mickey Liposchok, 52 years old, shot by his father in a murder-suicide in December 2013

•Damien Veraghen, 9 years old, poisoned and suffocated by his mother in a murder-suicide in January 2014

•Vincent Phan, 24 years old, shot by his mother in a murder-suicide in January 2014

Did you read them? Every name of each person on this list who was murdered?

Are you outraged?

Do you know why society finds it acceptable for family members to murder their relatives with special needs?

Because we are living in a culture that deems special needs people an entirely different species.

But they aren’t! These people are exactly the same as you and I. They deserve respect. They deserve love and compassion. They deserve to be treated with the same dignity afforded to anyone else.

They feel pain.

They love. They laugh. They trust.

And they deserve a voice.

They deserve to be remembered.

They deserve somebody willing to stand up for them.

Will you give them a voice?

Will you stand up for the innocents?

Will you light a candle in the darkness?

Better yet, BE the candle in the darkness.

Be the candle.

Stand with me.

Please Hear Me

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This piece was originally published in “IG Living” magazine, December/January 2014 issue. Three of my four children live with Common Variable Immunodeficiency. If I thought life was weird when they were little and sick, these teenage years often feel like a near death experience.

Teenagers. Can’t live with ‘em, can’t duct tape them to a tree in the middle of a remote forest — where nobody can hear their pleas for a better phone or a later curfew or another $20 — because apparently it’s illegal or something. Whatever.

My 15-year-old daughter has blue hair. Actually, at the moment, it’s bleach blonde with blue streaks. In the past two years, her hair has been dark blue, hot pink, purple, and in the holiday spirit of Christmas, fire engine red. It drives my mother crazy. She can’t understand why I let her do it.

My daughter and I argue. A lot. There are some arguments I absolutely MUST win — such as whether or not she attends her monthly infusion appointments – and some I feel are just not worth the time and effort to fight about – like the temporary color of her hair.

Parenting teenagers is hard. Parenting teenagers with chronic illness is even more difficult. I worry about all the typical issues most parents do: drugs, alcohol, sex, teen pregnancy. But it’s more than that. When a teenager lives with a chronic illness, each of these worries expands exponentially, because there could always be added ramifications.

I worry that excessive alcohol consumption could wreak havoc on an already weakened immune system. I worry what damage smoking cigarettes or pot would cause to asthmatic lungs already injured by infections. I worry that a split-second decision to have sex just once, could leave my daughter with an STD that would ravage her body, or result in a pregnancy she couldn’t possibly be healthy enough to support.

But then again……

Then again, I realize that I need to let my kids grow up. I know that when I was a teenager, I did…..well, some stupid things. I want to protect my children from every single Boogeyman in the world.

I also know I can’t.

When my kids were first diagnosed — really, even before that, when they were sick all the time and we weren’t sure why — I had control. They were young and I was the Boss. If they seemed ill, I cancelled plans and kept them home. I had the power to make them take their meds, or hog-tie them into a car seat for a nebulizer treatment. (Yes, a car seat. My little one was quick to run and hard to catch).

I have four children. All of them have asthma, and the three youngest live with Common Variable Immunodeficiency. My girls are 17 and 15, and at 11 and 13, my boys are just at the cusp of teen angst. As they are all growing older, it’s hitting me that my Supermom Powers are becoming rather impotent. It can be difficult to convince a headstrong, rebellious teenager to take their meds, stay home when sick, or submit to infusions. It has nothing to do with not being a good kid, and everything to do with being a typical teenager. And I know that in just a couple of short years, I will have no decision-making power at all. None.

None. My mother-heart quivers at the notion.

This, I think, is the root of my worry. In just over 2 years, my daughter can make the choice herself if she wants a tattoo, and I will have no say in that decision. She can decide to gauge her ears or her nose or pierce her tongue and I will not be able to do a single thing, except stare at my ceiling at 2 a.m. and worry about the cleanliness of the tattoo and piercing shop and the potential for infection. And keep a bottle of peroxide at the ready.

I wonder if this imaginary tattoo artist would accept a letter of explanation from our Infectious Disease guy? The possibility is slightly comforting.

I’ve always tried to be open with my kids, to explain that while their illnesses should never be used as an excuse to limit their futures, they do need to think. Think through decisions that may have a little bit more impact on them, because of CVID and asthma and everything else.

Last week, we received a baby shower invitation from a high school classmate of my daughter’s. I blinked a bit. The mother-to-be is a girl who has spent many sleepovers at our home; a girl whose hair I used to braid; a girl who –just a blink of time ago – was a little girl, just like my own.

I felt this warranted another one of those little mother-daughter “talks,” and cleared a space at our old wooden kitchen table for that purpose. Rather helplessly moving around the clutter that overruns our table (my Susie Homemaker skills are decidedly deficient), I catch her attention.
“Let’s sit down. I want to discuss something with you, Savannah.”

Hands halt, fingers aquiver over her iPod.

“Mom….is this about the baby shower?”

“Kind of….well…,” (The speed of my speech is increasing at a ridiculous rate, and my words begin to tumble over one another) “I think we should talk about the consequences of teenage pregnancy, and even though we hope everything goes well for your friend and her future is bright and happy….we should talk about….um….”

Eyes roll. The expression on her face clearly implying, “My mom is so lame, it’s going to kill me.”

“Oh. My. God. MOM. Please don’t tell me this is another sex talk. Not again.”

“Well, honey, it’s just that you need to understand the difficulties something like this could cause for you, having the medical issues you have…….”

I drift off, I know where I want this conversation to go, I’m just not positive how to get there.

“MOM. We don’t need to talk about this again. I heard you the last time. And the time before that. I hear you, I hear you.”

I hope she does. I hope she does.

Please hear me.

Reasoning

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When my children were initially diagnosed with a chronic and potentially life threatening medical condition, I wanted there to be a reason.

I wanted to know it meant something.

I wanted purpose behind the pain.

I read. Researched. Read more.

I thought it was something I had done. Something, perhaps, unintentionally done while pregnant.

Something that happened during their births.

Something I had done wrong after I brought them home.

And I was almost okay with that.

Almost.

I mean, at least it would have meant there was a reason. Some explanation.

Something concrete I could get my hands on, perhaps even fix.

Turned out, it wasn’t any of those things and I tried to accept that I may never really know the deeper meaning behind the diagnoses we were living with.

But however I tried, I couldn’t quite swallow that. I continued to hold on to this uncomfortable feeling that I needed a reason. Would a reason really change anything? Would knowing WHY change our daily reality?

No.

Even so. I wanted it. I knew it wouldn’t change anything, but I STILL wanted a reason.

Through the initiation of becoming a “chronic mom”, I began to shift my focus just a little, and perhaps in the wrong direction.

I still wanted a REASON, but I wanted the reason to change something.

I wanted the reason to be beneficial to someone. Maybe something good can come of this.

I wanted the reason to make my kids into something exciting. Maybe they will change the world because of this.

I wanted to know that because of their suffering and pain, something about the future of primary immunodeficiency would be altered, something that would make this journey worth it.

Worth it?

I was selfish.

This is our life. This is what we’ve been given, and spending precious time trying to force my family into some box of reason is just a waste of life minutes.

I have great kids. We have a normal family. School, work, dinner, laundry, dishes, dogs, homework.

Okay, so sometimes they don’t do their homework.

And sometimes I don’t so much cook dinner as I do pour cereal into bowls and pretend it’s dinner.

And the clean laundry piles up in the baskets that sit in the living room.

But I mean, still, a fairly normal life.

We aren’t special. Just because my family lives with chronic disease doesn’t mean my kids need to grow up to save the world. They don’t need to start a foundation. They don’t need a Nobel Prize.

Trying to push some magical reason into the reality of chronic disease just reinforces the idea that their differences make them…..well, different.

They didn’t choose this disease. Why should having it push them into being somebody they really aren’t, just so I can have my reason?

It shouldn’t.

And that is how I have been approaching things the last several years. My kids are normal kids who happen to have lots of acronyms scribbled in their medical charts. I have a normal – albeit messy – house, and our hutch happens to be decorated with medicine boxes. Monthly, the kids miss school for an infusion. Six days a week, my son gets an injection. We wash our hands a lot. We meet with a lot of physicians.

They watch cartoons I find downright stupid. They fight sometimes. They cry sometimes. They argue with friends, and fall in and out of teenage love, and try to create their own unique looks. They rise, they fall, they win, they fail, they do things I find pretty fantastic, and do things that piss me off.

And life goes on. Days go by. They are growing up, just like everyone else’s children. I was at peace with things. (That peace was hard-won, by the way. Lots of tears and questions and prayers and dismal thoughts. I fought for that peace and clutched it to my soul.)

Until The Phone Call.

One of our physicians was involved with a study. An exciting study! A study examining diseases that affect the immune system, particularly autoimmune and immunodeficiency diseases.

They were especially interested in our family, because all of my children have the same two biological parents, and we have four affected and two unaffected in our family.

This evidently makes us a novelty, or as my daughter would say, “freaks.”

Everyone we have met with regarding this study has been over the moon about this. The rarity of it! A family of such LARGE SIZE! And FOUR AFFECTED!

These physicians and researchers, they talk really, really FAST and their eyes light up and they can barely stop themselves from squealing.

They told me this study could potentially lead to a cure in my grandchildren or great-grandchildren’s lifetime.

In a year, I will get a printout of the information about the genes in our family and where they went wrong and maybe even find out what caused the immunodeficiency. Maybe.

I signed the forms and gave the blood – we all did – and I want to think I did it for all the right reasons.

I believe I was willing because it could benefit my children, and their children. Even me, since I am on the “affected” list.

But after it all was said and done, I started back to an old way of thinking.

I began thinking, “Maybe this is it! Maybe the reason we are stuck with this disease is so we can be right here, at this moment, involved in a study that could change the future of treatment for CVID.”

I thought I had beat that Reasoning Monster.

It appears that all along, it was just waiting for the right moment to pop back up in my thoughts.

There is a part of me that still just wants my reason. Something to make this all worth it.

Do you know what’s really worth it?

The last seventeen years I’ve been a parent, raising good kids in a world that is sometimes not so good.

Spilled juice. Broken toys. Baby teeth hidden under a pillow. Brightly wrapped presents under a Christmas tree. Watching my children learn to read. Summer baseball games. Parent-Teacher conferences. Guitar and clarinet lessons. Halloween costumes. Choir concerts. Elementary school talent shows. Senior pictures.

I’m still glad we participated in the study. I believe a lot of good will come from it, and who knows? Maybe my grandkids won’t have to deal with monthly infusions because of the blood we gave this month. Maybe my children won’t have to watch their own kids fight illness after illness after illness because of this study.

Maybe. Maybe not.

Regardless, my brain divides and wars within itself.

I’ve had strange dreams about “Screening Protocol for Genetic Diseases of Lymphocyte Homeostasis and Programmed Cell Death.”

And I wake up, drenched in sweat and breathing hard.

I am simply left….

Reasoning.