advocacy · parenting · special needs parenting

Rare Disease Day Letter, February 28, 2017


In 2006 & 2007 I spent endless hours Googling, as only a terrified mom can. 

My son had an enormous, bloated belly and emacieated arms and legs. I knew to the core of my being that he was terribly sick.   But our pediatrician, whom we had seen for years and came highly recommended by my physician family member and whose praises I heard sung by local pediatric specialists, kept nonchalantly calling him “just constipated”.  

If there was a way to convey my message, I did it, I even weighed and photographed his bowel movement, which only came every 10 days or do. She just increased his dose of Miralax. 

As a child with Down syndrome Ben was at risk for several types of congenital gastrointestinal diseases, but the one test that his pediatrician ordered came back inconclusive. 

I don’t know why it took me so long to go around her, I certainly wouldn’t take that long today, but I finally asked to just see the GI doctor. By that time my 15 month old was wasting away at barely 15 pounds, he was listless and had long since stopped reaching milestones. 

The GI office was scheduling months out, but had a cancellation with a nurse practitioner, I snatched it up like a drowning woman would grasp at a lifeline. 

I was terrified that she, too, would fail to see the dire condition of my son, but she hustled on our behalf. She gave him a Failure to Thrive diagnosis and marked his chart as urgent. She ordered a slew of tests, and conferred with the practice chief to make sure she didn’t miss a thing. 

Within a few weeks Ben was diagnosed with Hirschsprung’s disease, and had lifesaving surgery performed.

Within the same year he got a second rare diagnosis, Cyclical Vomiting Syndrome

In the 9 years that have transpired since, he has had 2 more surgeries and 2 out of state referrals for care with super-specialized doctors who manage care for a small subset of children with similar diagnoses. We have made gains on his care, but his quality of life is impacted daily by these diseases, including an hour long bowel flush through a stoma in his belly button which is done daily because Ben is completely unable to control his bowels. 

I can’t help but wonder if his life would be better if his a Hirschsprung’s was diagnosed within 48 hours of birth, which is the standard of care, but his doctors saw a constipated child with Down syndrome, rather than a child with a Rare Disease. 

I ask only that you join me in awareness, and if you are so inclined, click this link and share it to generate a donation. http://rarediseaseday.us/thank-you-for-raising-your-hand/

There are many rare diseases, so many that up to 10% of the population has one. Since the people with the individual diseases are few and far between, we have banded together to advocate for ourselves and each other. We are stronger together!

Uncategorized

No, Thank You, I Don’t Drink

No really, I don’t. 

It’s okay though, really, it is. 

You don’t need to pressure me, I’m perfectly fine without it.  And, no, I’m not judging you for having a glass of wine. 

Since you seem so uncomfortable about my glass of ice tea, I’ll explain it to you. I have alcohol intolerance.  I never know if it will be my first sip (like that New Year’s Eve when I had a sip of someone else’s drink and broke out for days) or if I’ll make it through a drink and loosen up enough to have just one more.  The last time that happened it was vomiting, diarrhea and migraine for the next 18 hours. 

So you see, it’s just not worth it. 

But ya know what?  Why do I have to explain that every single time I decline a drink?  

Why does it matter to anyone if I just say “no thanks”. Last time I declined an ice water nobody said, “C’mon, can’t you have just one?”

What if I had a medical condition or was taking medication which prevented me from drinking, would I have to explain that too?  Or if I was pregnant and nobody knew it yet?  Or what if I was a recovering alcoholic and that wasn’t your business either?

Do me a favor, folks, just drop it, mkay?

When offering drinks, if your company declines, just say ok, and leave it at that. 

Oh, one last thing, I don’t need you to be my personal Google and figure out if there’s a type of alcohol I can tolerate. I’d really rather not chance it just to make you happy. 

advocacy · politics

How many roads must a man walk down Before you call him a man?
How many seas must a white dove sail Before she sleeps in the sand?
Yes, and how many times must the cannon balls fly Before they’re forever banned?
The answer, my friend, is blowin’ in the wind
The answer is blowin’ in the wind

Yes, and how many years can a mountain exist Before it’s washed to the sea?

Yes, and how many years can some people exist Before they’re allowed to be free?
Yes, and how many times can a man turn his head And pretend that he just doesn’t see?
The answer, my friend, is blowin’ in the wind
The answer is blowin’ in the wind

Yes, and how many times must a man look up Before he can see the sky?
Yes, and how many ears must one man have Before he can hear people cry?
Yes, and how many deaths will it take ’till he knows That too many people have died?
The answer, my friend, is blowin’ in the wind
The answer is blowin’ in the wind

~Bob Dylan 

I’ve been sitting here in my living room, screaming from the top of my lungs on a blog for a year now. It’s time to make noise in person. 

http://rareaction.org/events/upcoming-events/michigan-rare-disease-day-advocacy-event/

Now to see if they need a public speaker. 

advocacy · politics

Have We All Had Enough of Nasty Words?

What names have you been called since June 2016?  A Wingnut?  A Libtard?

What names have you called others?  

In some cases we take the names we’re called and embrace them:


And sometimes they just hurt.

In a recent conversation it became evident that name calling has become so bad that when I identified myself as a liberal, the person accused me of using of using names like bigot, sexist, racist and others toward all conservatives. He just assumed that I was against him because he’s been called names by people like me so many times. 

We ended up having a pretty decent conversation that ended with a better understanding of each other and hopefully a lesson that can be applied more broadly.

But it doesn’t always happen that way.

Name calling interferes with understanding and empathy. If I want someone to hear my side of the story, I’m doing myself a disservice if I use name-calling in my tactic.

A quote that I dearly love and use frequently in my own life and in my writing is perfect here.

Don’t Take Anything Personally. Nothing others do is because of you. What others say and do is a projection of their own reality, their own dream. When you are immune to the opinions and actions of others, you won’t be the victim of needless suffering.
~Don Miguel Ruiz, The Four Agreements

And then the quote within the quote:

What others say and do is a projection of their own reality…

What I say and do is a projection of my reality.

How do I want to project my reality?  Do I want people to see a person who derides the POTUS and all who voted for him?  A bitter person who paints all those who disagree with me with a broad stroke?  Or do I want to remain open to conversation and understanding with those who don’t share my opinions?  If my desire is the latter (and it is), then if I choose to use slurs or insults, I have undermined my own goals and desires.

There is a simmering resentment bubbling up and nearing a full, rolling boil, and if we let it boil over, or contribute to the boiling over, then we must understand that not just the other side, but our own side also will be burned when the pot boils over. 

I don’t stand clean in this area. I shared a quote suggesting that a subset of Trump supporters were “hypocrites”. I didn’t realize how much so before I posted it, but the use of the term “hypocrite” really chaffed some hides, and rightly so. To those who were chaffed by my choice of words, I apologize.

But some stances and actions are hypocritical or bigoted or sexist, and those do need to be called out. So must we remain silent when we witness wrong actions and words?  Absolutely not!

Might I suggest applying the principle “people first language”?

People-first language is a type of linguistic prescription in English. It aims to avoid perceived and subconscious dehumanization when discussing people with disabilities and is sometimes referred to as a type of disability etiquette.

~Wikipedia

People first language is important to me as a parent of children with Down syndrome. It places emphasis on a person as a human being who has certain characteristics. Rather than a “Downs kid”, I have kids with Down syndrome (or Downs). There’s more to my boys than Down syndrome, it’s only one of many descriptors that can be applied to them.

Using that principle, rather that calling someone a bigot, point out a bigoted statement. Rather than referring to someone as a Libtard, point out the discrepancies in their reasoning and why you disagree.

And furthermore, our President is not a Cheeto, a Drumpf, the Orange One, or anything else. He is the POTUS, and no matter how much you dislike him, please preserve your own dignity by calling him by his name, by his title, or even just “45”.  If you do not have the composure to refrain from slurring the president, then maybe you should do what your mama always said and say nothing at all.

While I am “only” 43 and haven’t lived as much history as many of my friends, I have never experienced the deep divisions and animosity of our current political climate. I’m not the most patriotic person in the world, but at the end of the day, this country is all I’ve ever known. I want it to remain intact and stable, and frankly I want to be able to enjoy a meal with all of my loved ones, who voted in many different ways, without tensions interfering.

As I hop down off my soapbox, I’ll share one last thought. In my family I’m the one who leapt across the aisle. Many of my loved ones have very different political views from my own. I cannot abide the thought of my parents or siblings being painted as racist, sexist or anything else because of their political affiliation, because they are nothing of the sort.  I believe beyond a shadow of a doubt that our hearts are desiring of the same things and grieve the same things, but that we see different solutions. We have common ground and divergence and trust each other to both be following our conscience and Christ himself to the best of our human abilities.

dog

8 Reasons Dogs Make The Best Friends For Introverts

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I am deeply introverted. Like I have never once gotten to the point where I felt like I spent too much time alone and maybe it was time to socialize. Like, no matter how much I like or love you, I will have second thoughts about going out. Like, if you gave me a tiny cabin in the middle of nowhere with woods nearby, I might think it was heaven. 

I could wile away endless hours alone, well, as long as my dogs are there. 

Dogs are highly social animals, so why would I be able to tolerate so much together time with them?

  1. No small talk. Ever. 
  2. They’re hilarious. I laugh my head off at my dogs endlessly, which is a mood lifter. 
  3. We can go hours with no interaction. 
  4. They’re never upset with me. As many introverts are, I’m a highly sensitive person. I avoid conflict and disharmony whenever possible, and my dogs never create any negativity. 
  5. They don’t watch TV or use electronics, so they create little noise pollution. 
  6. Their soft, supple warmth fills my soul. 
  7. They wait patiently for me. (Even when I’m in the bathroom).
  8. They can’t eat chocolate, so my stash is safe!

 

advocacy · special needs parenting

A (not so) Horrible Backslide on the Slippery Slope

I suspect that it started in the early 90’s when I worked at a shelter called The Recuperation Center.  It was a transitional shelter where people from various walks of life could stay after a hospital discharge if they were homeless or their housing wasn’t adequate, until they were settled into housing that fit their needs. Some of the people I met there left enduring impressions.

There was K, the street bum who I later saw as a paramedic student, drunk and passed out, covered in his own urine.  When I met him at the center, he was sober.  A quiet man who mostly kept to himself, he only spoke when spoken to…except that one time. There was another resident there who was a physician assistant student. She was struggling through her Organic Chemistry homework (which is a weeder course for pre-PA and pre-med students because it’s the likely most difficult undergrad course). K sat down beside her and tutored her.  He patiently worked with this aspiring medical provider, guiding her through information that was clearly as familiar to him as his ABC’s.

Mind blown

I met M there too. He was an outgoing, engaging young man.  He was often up and restless during the graveyard shifts that I worked. He might have just needed a good listener, and I always have fit that description. He told me he was dying. He had something called MAC, which I finally realized was a complication of AIDS. (Back before Google it wasn’t easy to find out these things).  He didn’t overshare, but he had lived a promiscuous life as a gay man. He was one of those people I had read about in the book I got from Summit Ministries about the “Homosexual Revolution”. The book depicted people like M as having an destructive agenda, but M showed no apparent threat. I considered him a friend. I felt dirty about it, how could I like this person I had been specifically warned about?  His stay there was brief, and once he was gone I decided not to trouble my mind about such things.  At the time I didn’t know what cognitive dissonance was, even so, I managed to avoid it like the plague.

In my work as a paramedic, I saw families ravaged by poverty. I left pieces of my heart in many homes over those years.  But I knew that if they just pulled themselves up by their bootstraps that they could do better. It was mistakes that got people into those circumstances and correcting the mistakes would fix the circumstances. I was sure of it.

Then it was my family. We brought our niece home when her mother spiraled out of control, addicted to prescription and street drugs. During the 18 months that followed I became an impromptu social worker. Mike and I worked alongside the professional social work team with the foster care agency overseeing our “case”. We found an inpatient rehabilitation center that accepted my sister-in-law, and were elated when she graduated from the program a few months later.  Then she found an apartment and started a new life. Just 6 months later she died of a heroin overdose. She pulled herself up from her bootstraps with a whole team of professional and family support, and it wasn’t enough.

Shortly after that I went to work in the child welfare department of the Christian agency that had overseen our foster care license for our niece (for whom we took guardianship, and parented into adulthood). It was in October of 2008 and you could have knocked me out with a feather when my Christian coworkers talked about voting for President Obama. In my mind Christian=Republican. There was no exception. Yet these women were on fire!  It soon became apparent that they weren’t the only progressive, Christian social workers around. I was surrounded by smart, savvy, Christ-loving people whose hearts were left in pieces in the homes where they served. But these people had graduate level educations in the social sciences, which demonstrated how progressive policies were far more empowering to people in dire straits than pulling on bootstraps.

I listened and learned, retaining a hint of skepticism about some of their more liberal views.

I still voted Republican in 2012.

But I was more moderate. A bleeding heart Republican, if you will.

I kept listening, hearing stories, reading recommended books.  Then I started attending a progressive Christian Reformed Church (yes there is such a thing).  I embraced the progressive messages with abandon.  I was beginning to reconcile my Christian faith with more liberal practices, and was set free from a worldview which insisted that I should love my gay friends but still hate their sin, and that maybe they should somehow shed their gay identity to be welcomed into the pew with me.  The paradigm shift wasn’t entirely comfortable, but it was welcome.

But there’s even more.  When you have children with disabilities, with cancer and complex medical needs you build a community, and my community struggles.

It’s only been a few decades that children with complex needs have survived infancy, and kept in homes instead of institutions, and their families often lack much needed support to meet the needs of children who have numerous doctor appointments, therapies, and daily need to balance.

People cannot believe that we don’t get respite care (other than Grammy), even with Ben’s complex developmental and medical needs. People cannot believe my boys don’t have Medicaid or SSI. They seem to assume it all comes with the package.

It was with the 2016 election that the final straw came down hard and fast.

Last spring I was faced with 2 presidential candidates who I had disliked and I simply couldn’t vote for either. That’s when I started digging to figure out what would be the lesser of the evils, so to speak.  I dug in hard. I fact checked reams of documents about Benghazi and email servers to satisfy myself about all of my misgivings about that, and then dug into policy positions on both candidates.

That’s when I found Hillary Clinton’s disability plan. 

After perusing it I kept digging to find out how she knew about families like mine and why she cared. She had heard the voices of families like mine. She had paid attention to them, and not only acknowledged their plight, but made comprehensive plans to improve the daily lives of families like my own.

When you’re drowning, you need a lifeguard.  In Hillary Clinton, I found one.  I struggled with her abortion position, only to find that she had carefully researched that position as well, and had many policy positions that would reduce the factors that lead into abortion, and that those positions had been demonstrated to decrease abortion numbers significantly in places where they were put into action.  My ideal would be no abortions ever, but I do believe that better birth control options and supporting women in crisis pregnancies is the best possible way to move in that direction.

I’m afraid that the current administration has only deepened my interest in progressive politics with their consistent and persistent policies eroding what little support complex families do have.

It’s not a radical story. As pendulums swing, I realize that mine might swing further left, or back toward center or back to the right, and much of that will play out based upon how our 2-party system continues to evolve.

Even a year ago if you had told me that Hillary Clinton would be my candidate I would have laughed myself silly.  Life is funny like that, isn’t it?