Chronic Illness

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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Bits and Whatnots, Chronic Illness

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.

Bits and Whatnots, Chronic Illness

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.

Chronic Illness

Don’t Kill Ben.

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I love this meme so much. Many people do not realize how their decision to not vaccinate may impact those who have no choice but to remain unvaccinated. In fact, through a multitude of conversations and readings, I have found many people assume the only illness that could weaken an immune system in such a way that an individual could actually die from easily prevented (through vaccination) diseases is HIV/AIDS. Thousands upon thousands of people in our country live with a form of primary immunodeficiency. Primary immunodeficiency means the body lacks or is deficient in the part of the immune system that fights bacteria, which also means the body cannot produce antibodies to an illness or vaccination.

Simply put…if YOU came down with strep throat, your body would rally a defense, you would fight it, get better, and then, say, a week later you were near someone else who had strep, your body would recognize it and you would not get it again because you now have antibodies against it.

My kids get strep throat, take weeks of antibiotics, miss weeks of school, finally get better, encounter someone else with strep, get it again, and again, and again, and again. This goes for anything…..stomach flu, influenza, upper respiratory infections. Every illness they struggle through weakens the body further, leaving them vulnerable to any bacteria or virus out there.

Now imagine what could happen to them if they caught….chicken pox. Measles. Mumps. Polio. Whooping cough. We could be talking about lung collapse. Sepsis. Death.

Now, I’ve heard the old argument, “I had measles back before there were vaccinations, and I was perfectly fine.”

Whoop-de-do for you. You were fortunate to be born with a healthy immune system. Not every one is. Luck of the draw, buddy. You can’t assume that because you were fine, everyone else would be fine, too.

And I’ve heard it stated, “I don’t care about anyone else. I only care about me and my family and I don’t want to vaccinate.”

Isn’t it great you get that choice? Wow. Some of us don’t get a choice. But hey, very thoughtful of you to risk the lives of others because you are selfish. Bet you are raising some nice kids over there. Obviously, the only lives that matter are the ones under your roof.

But we all share a planet. We should try to help each other. Can you really sleep well at night knowing you may have caused the death of someone else’s child? A child whose parents love them just as much as you love your children?

Our family and other families like ours rely on the “herd immunity”…..that other people are vaccinated and thus form a protective circle around the people who can’t be. The more people that choose to not vaccinate, the more people with primary immunodeficiency seriously affected by that choice.

There is no cure for immunodeficiency. The only treatment is a monthly or weekly infusion of a plasma by-product called IVIG. IVIG contains the antibodies from thousands of donations of blood and plasma, boiled down and put into one little bottle. This infusion gives my kids a sort of “temporary immune system” that lasts a few weeks, until we have to do it again.

Hypothetically, if this trend to not vaccinate continues, there could come a day when there aren’t enough antibodies in the pool of donated blood and plasma to create the IVIG that we rely on for survival.

There is no other treatment for primary immunodeficiency.

There is no cure.

If such a day ever came……….what would we do?

Families like mine don’t get a choice.

But YOU do.

What will you choose?

Bits and Whatnots, Chronic Illness

Kiss Me, I’m Horny!

When my youngest son was very little, he was not the easiest little guy to manage. Wiggly, curious, wiggly, hyper, wiggly, prone to temper-tantrums, and by the time I was able to get him to sleep at night, my own blood pressure was so high I couldn’t calm myself down enough to go to bed. Also, there was the wiggly nature I may have alluded to earlier. With the wiggles.

He had a constant need to be on the move, and to have something in his hands at all times.

This was around the ages of 3-4 years old, and he had a habit of naming EVERY. SINGLE. THING. Ever. In the Universe.

And he named them according to physical attributes.

There was Blackie, and Spotty, and Brownie, and Stripey, and Squishy, and Softy. And so very, very many others, the names of which I can no longer recall, although at the time, I had quite a knack for it, as it was required that I call each toy or item by name in order to play any of the bazillion-ty-million imaginary games he made up.

Early on, Brennan had a speech issue that required some speech therapy, as well as occupational therapy for some sensory and fine motor skill delays. We were encouraged to repeat and repeat words he could say properly and go along with any conversation he initiated, in an effort to build his vocabulary.

That was right around the time he was given a little Beanie Baby as a gift from his grandmother. Small and squishy enough to fit right into his hand, he developed a deep and abiding love for this Beanie Baby.

It was a rhinoceros.

He named it Horny.

Falling asleep each night, Horny would be clutched tightly into his small fist, curled up to his slightly-sleep-sweaty baby cheek.

Breakfast, lunch and dinner had to be eaten with whatever hand wasn’t clutching Horny, and the little rhino went everywhere, and I mean everywhere, with us.

As it was his most favorite thing in all the world, we were kind of forced into developing conversations and games around Horny and his activities. Horny the Rhino became such an intricate part of each day, we sort of forgot how funny it sounded.

Of course, Horny had to go with us to occupational therapy, and I still remember the look – and it’s been about 7 years now – on the therapist’s face when Brennan ran up to her, waving the rhino in his hand, screaming, “Kiss me, I’m Horny!” and shoving the stuffed toy up to her face.

(Stumbling, stuttering explanations hurriedly ensued.)

Three of my children have a medical disorder that requires a monthly infusion. When they were little, each poke was rewarded with a treat from a prize box.

On one such day, Brennan’s veins weren’t cooperating, and he had to get two needle sticks in a row, so he went in search of TWO new toys from the prize box.

Digging to the bottom of the big box, he came up victorious. Brennan had found not one, but TWO (what are the odds?) rhinoceros Beanie Babies!! One was very tiny, and the other one was extra large.

Turning joyously to his nurse, he shouted at the top of his lungs, “Now I have a Horny baby, and a Horny daddy, and at my home I have a Horny mamma!”

I’m not positive what that peculiar shade of purplish-red is called, but both the nurse and I had simultaneously turned the same color. Our eyes locked over his head, her mouth opened and shut, opened and shut, the look on her face clearly communicating, “I know there must be a valid explanation for what this little boy has just said, but I can’t come up with anything.”

I tried to explain, but I was choking and hiccupping and trying valiantly to swallow the horrified laughter rising from my throat, my hands fluttering somewhere around my face like butterflies on speed.

And Brennan? He was oblivious, sitting happily on the floor and introducing the new members of the Horny family to one another.

Bits and Whatnots, Chronic Illness

Mother Love, Mother Guilt

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

Bits and Whatnots, Chronic Illness

Invisible Illness Week (A snapshot of CVID)

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So we’ve seen the little meme’s floating around Facebook about “Invisible Illness Week”. Bloggers are blogging, Tweeters are tweeting. Shouters are shouting. Heralds are heralding.

I happen to be a blogger who lives with chronic illness, so guess what I’m going to do? Yep. I’m going to start shouting in 3, 2, 1….

Okay, I’m kidding. I’m not a shouter except when people recommend Echincacea to me as a cure for CVID. So here I am, far past my bedtime but the only time my house is quiet, blogging about something I never imagined I would have to learn to live with: Invisible Illness. I tend to think it’s an odd term, “Invisible Illness”. I mean, ANY illness is going to have symptoms, something about it that stands out, or makes life different for the person living it. Chronic illness isn’t really invisible. It’s just that people who don’t live it don’t catch those little things that stand out.

They don’t pick up on the visible symptoms….like missed school and work days. Like foods avoided and medication refills. Like excessive weight loss or gain. Like limited activities or long sleeves on a hot day to hide a rash.

They don’t pick up on the visible symptoms, because we hide them. And that’s what makes many chronic illnesses invisible.

For a long time, I thought these things were hidden because of shame. I thought those that went out of their way to hide the flare-ups, the pill bottles, the medication side-effects and the daily pain were ashamed of living with an illness they hadn’t asked for, and I couldn’t understand it.

But after over a decade of raising 3 children with Common Variable Immunodeficiency (CVID), I’ve met a lot of people who live with “Invisible Illnesses” (and been diagnosed with a few myself) and I think I’ve started to understand that it isn’t “shame” that keeps them invisible.

It’s just that we get tired.

We get tired of answering the questions. You know why? Because the people who ask them don’t listen to the answers. And they just keep asking.

We get tired of explaining why their particular herbal remedy/supplement/vitamin/fancy juice won’t work to fix our problems.

We get tired of justifying our choices of treatment, because the people who condemn them don’t understand the options available (but they judge our decisions anyway).

We get tired.

We get tired of explaining the ins and outs of insurance coverage, and of allergic reactions, and that yes, we understand that your Uncle’s Cousin’s Neighbors Great-Aunt-Twice-Removed once talked to a veterinarian who treated a dog whose owner thought she might have had SOMETHING LIKE THAT, and healed it with Echinacea. Just like that! But really, people, if we could cure our chronic illness with a $5 bottle of an herbal supplement bought at the local Wally World….don’t you think we would?

Do they REALLY think we want life to be this difficult? This painful?

Let me tell you something, Healthy People of the World: When you talk down to us like that, as if we are too dim-witted to research and investigate and make logical decisions based on our personal diseases, hours of discussions with our physicians, and research, research, research….well, Healthy People, that’s the kind of thing that causes those living with an Invisible Illness to feel guilt. And shame.

It’s the kind of thing that makes us want to hide.

It’s the kind of thing that negates the confidence we have achieved (hard-won), through days and weeks and months and years, yes, YEARS, of struggling with pain and fatigue and illness, of drug trial and error, and of learning to accept that we will never again be one of YOU, Healthy People of the World.

And at first when we get diagnosed, we want to inform everyone else, expand their mindsets, pour the knowledge we have gained directly into their brains, so they can understand when we have to cancel plans at the last minute (NO, it’s not because I suddenly don’t like you) or bring our own food to the party (NO, it’s not because we think you’re a terrible cook) or we begin to weep at the sight of another person, a Healthy Person, engaged in an activity we will quite likely never be able to participate in (NO, for crying out loud, please don’t ask me if it’s PMS).

But these other people, it seems like they don’t want to hear us. We talk and talk and show articles and read research studies and learn and learn and learn so we can be ready for those questions.

And when finally the questions come, they sound a lot like, “Have you tried a cold washcloth in a dark room?”, or “Do you eat enough fruits and vegetables?” or “Have you tried *insert any form of unproven, unhelpful, pseudoscience here* “?

We answer the questions, we answer the questions, we answer the questions. We answer them again.

And yet, we continue to hear the SAME. EXACT. THINGS.

Many people simply DON’T. WANT. TO. LEARN.

And so, we stop talking. We stop informing. We stop shouting.

We kind of just give up, and we quiet down. We begin to just smile at the suggestions and nod at the offers of help from people who think they know somebody who knows somebody who knows a little whisper, a teensy fragment of the pain we live with EVERY. SINGLE. DAY.

These are the things that make us so tired. And we are exhausted enough already.

These are the things that keep us invisible.

So in honor of Invisible Illness week, I’m listing 5 things I wish you knew about Common Variable Immunodeficiency:

1. No, My Dear God, NO, Echinacea won’t boost a dysfunctional or deficient immune system. Think about this: If your immune system is dysfunctional, WHY would you want to “boost” it? You’d only succeed in boosting more abnormality.

2. No, Primary Immunodeficiency is NOT AIDS. NO, it isn’t. I know you hear the part of the name that says “immunodeficiency” and that’s what you automatically think of. I know that. But a primary immunodeficiency is a glitch in the system that is present from birth. It’s not caused by sex, drug needles, or licking a nasty seat on a subway.

3. Yes, we know we need a lot of antibiotics and steroids. Yes, we know that isn’t great for most people. Yes, we have to take them anyway. Why do you want to keep arguing that point?

4. No, living with this disease is not a death sentence; there is currently no cure, but there are some great treatments out there. Respect the ones we choose.

5. No, we are not mean parents because we treat our CVID kids with infusions or subcutaneous injections. You say, “I couldn’t do that to MY child!” But I guarantee you could. You’d do it because you would know it was the best thing for your child, and you’d buck up and get’r done. You’d feel bad, and you’d wish you didn’t have to, but you’d do it anyway.

WARNING: Hey Person Who is Interested in asking me to try giving my kids Echinacea instead of “letting them be stabbed with a needle” every month, please enjoy the feeling of the great big grill on the front of my great big diesel truck against your head. (My neighbor had a sister whose across-the-road neighbor knew somebody at the barber shop who said that was a great, all natural cure for fat-headeded-ness).