Hidden Trials: Parenting with a Disability

True confession: I am writing this post from my couch, in my PJs at not-very-late-in-the-day o’clock. I am highly medicated.

I’ve been loath to write about parenting with a health condition. It’s personal. It’s scary. It’s my biggest success and greatest failure. It’s one thing to change my life but another for my health to dictate my kids’ lives. I tried to keep those things separate, but the harder I tried the more they collided.

I finally embraced the changes that sprung from my disability. It’s not all good…but it’s not all bad either.

First The Good

My health saga began in 2011 with a simple surgery. My son was six and my daughter was five. Up until that point, I planned to model a balance between work, family and fun. Overnight, I went from being fiercely independent to struggling with basic function. Some days, I helped with homework and went to soccer games. Other days, I didn’t make it out of the house or off the couch. And occasionally I ended up on the side of the road throwing up with the kids buckled into the back seat.

If you’d asked me six years ago if my kids would be better people for my struggles, I would have laughed, then cried.

Then I started paying attention.

When I was sick, my daughter brought me stuffed animals. My son hugged and kissed me. And they never complained about missing things because I couldn’t get them there.

My kids aren’t perfect. In the last six years, they’ve been known to argue about bedtime, rules and where they should be allowed to go. But they rarely say anything beyond “I hope you feel better” if I have to miss a school function or a game, or they do.

When my kids were born, I worried about teaching them empathy and compassion, about instilling the idea that everyone is facing his or her own challenges. They live those challenges first hand. They understand that private struggles occur behind public smiles. They are more caring and open and empathetic than I was, even seven years ago.

Then The Bad, or at Least The Different

My kids will never remember me the way I see myself. They won’t remember the woman of their first years-someone with boundless energy, in constant motion. They see glimpses. I still love the outdoors and I think I’ve passed that on to them. They know I love new experiences; they don’t know that the pace of discovery has changed. They don’t know that considering medications, medical supplies and care limits our adventures.

While I’ve worked hard on acceptance over the last few years, I worry that my kids will confuse acceptance with complacency, mistaking my inability to do some things with my desire to do them. They won’t remember my career. My health has forced conversations about their place in the world. We talk often about following dreams, setting goals and working hard. For better or worse, my kids know I didn’t choose this exact path, but I’m trying to make my own best life. I’m still terrified that actions speak louder than words and that my kids, particularly my daughter, will limit their own options because I had to limit mine.

Rather than independence, we focus on interdependence and gratitude. Over time, my family, friends and community became the sweet to my life’s bitter. My kids have learned firsthand that life is better when we all help each other. Even though I miss my feisty independence, this journey taught us to give and receive help with grace.

And Finally, The Ugly

I want to ignore this section, but that would be such a lie. The fact is, my kids see me at my worst. They see me in pain, unable to move or to talk, unable to stand or write or function for hours (and sometimes days) at a time. I wish it were different. They wish it were different. But we’ve all learned to embrace the good and wait out the bad.

It’s not perfect, or even perfectly imperfect, as the saying goes. But it’s real. I choose to hope and believe that instead of instilling fiery independence, I’m teaching quiet strength and resilience.

Healthcare, Disability and my iPhone-What Really Happened

In 2011, I had a career I loved. I had a Master’s Degree and more than a decade of experience in my field. I had great health insurance through my husband’s company. I had a spouse with a solid career, a preschooler and a kindergartner. We owned a house in a community we loved, with a mortgage my husband and I could comfortably pay on our two incomes. We had months of living expenses saved, just like we were taught.

 

In 2011, I had routine surgery.

 

It didn’t go so well.

 

In 2011, I had “complications”, a euphemistic name for nerve damage, organ damage and a new need for medical devices to stay alive and healthy. I still have them now.

 

In late 2011, I tried to go back to work.

 

That didn’t go so well either.

 

I told myself to try harder, push more. I told myself to believe in mind over matter.

 

I collapsed on a patient.

 

I sat down and couldn’t get back up.

 

I went to yoga and left in an ambulance.

 

When your body truly fails you, it doesn’t happen because you are lazy or because you’re not trying hard enough. It happens because you are in the middle of a medical emergency, and sometimes, that emergency doesn’t have a perfect ending.

 

It would be nice if I could trade my iPhone for my career.

 

By late 2012, I had no career. I had a Master’s Degree and more than a decade of experience that got me nowhere, since I couldn’t function well enough to work, no matter how hard I tried. (And believe me, I tried.) I was one of the lucky ones. I had a funny, compassionate spouse with a solid career and a first and second-grader in a school with wonderful teachers. We had a house in a community we loved. But we had one income, a mortgage we couldn’t afford anymore, and thousands of dollars of medical bills, leftover despite our “great” insurance.

 

In the USA, something like 18-20% of bankruptcies are directly due to medical bills. Another 35-40% are medically related.

 

Medically related.

 

As in, no matter how hard I tried, I couldn’t work, couldn’t function at a “normal level” because of my health.

 

Do you have any idea how frustrating that still is, in 2017?

 

Do you know how laughable three months of emergency savings becomes, when it takes a year of medical trial and error to realize that your career isn’t your future anymore?

 

When I say that I was one of the lucky ones, believe me. We had family help in our worst moments. They helped keep us from losing our house, and sometimes kept me from losing my sense of myself. Along with their help and my (no longer existent) retirement fund, we still have a house in a community we love. I have a 5th and 6th grader who go to local schools with wonderful teachers. I have a funny, supportive spouse with a solid career and great health insurance.

 

Still, it would have been nice to trade my iPhone for my house.

 

My point is this—Through a combination of hard work, education, circumstance and luck, we did everything right. We were upper middle-class. We followed all the rules about how to be economically savvy, so that we could ride out any emergency.

 

It wasn’t enough.

 

I still look back at 2011-2012 as the most traumatic time in my life. I was scared, injured, in pain, devastated over the loss of a career I loved and terrified of losing my home and my community. We only made it through with help. A lot of help.

 

Emergencies are the ones you never see coming, and they don’t follow your rules. And giving up an iPhone won’t change a thing.

Parenting, Politics and the Women’s March

I attended a Woman’s March today with my daughter. Upon coming home, I read comments from several friends, asking why we couldn’t wait and just give the administration a chance. I’d like to address the very real actions of this administration that helped us decide to march. Why we decided it was worth being called names, losing sleep and standing in one place for 90 minutes just waiting to get to the route before spending another 8 hours on our feet.

My top five reasons to get political with my daughter today:

1) “I moved on her like a bitch…and she was married….I just start kissing them…..and when you’re a star…you can do anything. Grab ‘em by the pussy.”

-The President of the United States of America

This quote alone is enough. This is the President of the United States bragging about sexual assault. This is not me worried about something he might do; this is me worried about what he has done, and how he might abuse his position to assault other women. This was the end of his “chance”.

But since that wasn’t enough for voters, here are the others:

2) Donald Trump signed the order to pave the way for the ACA to be repealed. He campaigned on it, and he did it.

If you read this blog, you know I have a medical condition that REQUIRES medical care. Without it and the medical equipment delivered to my house every month, I have two choices. I can go to the ER every few days. Or I can die. This is not hyperbole. I need actual health care, not “access” to health care, the same way I have “access” to a three million dollar house, if I could just afford it.

No, my health insurance is not through the ACA. But I need the protections provided in that law, because without them, I am one walking pre-existing condition. I’m lucky enough to be well covered, but my fate is also the fate of many others who need the same protections.

3) Betsy DeVos, for so many reasons.

Look, I’m going to make a lot of people mad and say that I understand the drive for vouchers, and while my kids attend a great school that they love, there was a time we considered private school and vouchers would have helped us get there. I also went to private school as a child.

And in my very Christian private school education, I had truly amazing teachers. Except for science. Because we didn’t study science. I could recite large swathes of the Bible from memory by 2nd grade. Science, not so much.

Here’s what I learned about “science”: Charles Darwin was a bad guy and anything that supported evolution, bad. The Earth was 6,000 years old. You know what supports evolution, but also medicine and manufacturing and innovation? SCIENCE! When my kids started doing really cool science projects in elementary school, I realized just how much I missed. Did I catch up? Yes, but it required a crisis of faith to get there.

In a world that increasingly relies on science and technology, I have reservations about tax dollars going to fund schools that can ignore subjects based on religious preference, and she has worked to include religious schools in voucher programs.

And also, guns in school. And grizzly bears. And the IDEA law. And Title IX and civil rights and sexual assault (see number one and put it in this context).

4) And while I’m on the topic of civil rights, and LGBTQ rights, and climate change and disabilities….these are among the topics that were removed from the WhiteHouse.gov page within hours of Donald Trump’s inauguration.

Three of these pages directly relate to my children and I. The fourth effects people I care about. They all effect people, period.

5) I’m going to lump several in as “other cabinet picks”. A director of the HHS who has repeatedly stated the direction for the ACA, Medicare and Medicaid is a direction I believe to be harmful to actual people in this country. A director of energy with conflicts of interest and a seemingly questionable understanding of the department he would be tasked to run. A HUD director who has no background in housing or urban development. Steve Harvey.

6) Ok, I said five, but I’m also going to throw in disdain for the CIA, the FBI and the NSA. Giving a speech to the CIA and discussing the size of the crowds on Inauguration Day and the number of times he has appeared on Time magazine’s cover. The “war on the press”. The war on Saturday Night Live. (Thanks, SNL….it’s comedy gold.)

Oh, and 7) A guy in line for the bus. The conversation went like this:

Him: “You’re going to the protest?”

My daughter and I: “Yes.”

Him: “You’re the problem. You think people should have to serve anyone, help anyone…like those bakers. You drive people out of business. You’re ruining the country.”

Me: “….”

Him: “What if a 30 year old man wanted to go in the bathroom with her (points to my daughter) just because he identifies as a woman. That wouldn’t bother you?”

Me, my daughter and my mom, all at once: “No.” “That’s fine.” “Not at all.” (I really love them. Spoiler: He left when he realized it was an entire bus full of people going to the march.)

I marched so the administration, and all our local reps would pay attention, and to try and stop the carnage of the last two days (thanks for the quote, DT). I took my daughter because I hope she learns to be involved now, and it carries through her life. We did it because we’ve been watching what has happened and discussing it and she wanted to go. We marched because we believe that deciding to “wait and see” will do even more damage, and OMG, there’s already enough. We marched because I believe that this administration will increase my daughter’s risk of sexual assault, and the only danger for a 30-year-old transgender woman is that she will get assaulted herself in the men’s bathroom. I took my daughter because in her life, I want her to stand up for herself, but also for others.

Keeping Kids Moving with Activity Jars

Sorry for the brief hiatus, folks. Minor health crisis, which is all fine now but took my time and attention for a bit. In the meantime, this went up! Hooray! If you have younger kids and are looking for ways to keep active and have fun during the cold winter months, this is for you. Enjoy!

http://www.activekids.com/recreation/articles/keep-kids-moving-all-year-with-activity-jars

Hours, Minutes and Moments: Living with a Hidden Health Condition

Since I started this blog, I’ve been approached by several people who are living a story similar to mine, hiding their health in plain sight. We are all involved in life, in challenging jobs or parenting and the volunteer work that accompanies it. We are the first people asked to take on a project or to work a little later or to fix just this final problem. And we all say yes, over and over until we can’t do it anymore.

When we finally say no, we worry that we look lazy or uninterested or self-involved or maybe even crazy, when really, we are physically incapable of continuing.

These people all asked for a voice, for someone to try and show the world what it looks like to function in a body that sometimes works against itself. “Functioning” looks different in each area of my life, whether that is parenting or work or daily activity or navigating the maze that is our medical system. I’ll touch on each in greater depth over the next couple weeks.

Today is an overview and I’ll tell you what I can.

 

My life is lived in a combination of numbers, of hours and minutes and moments and choices.

 

It is the ticking of the clock.

 

It is watching the minutes and hours pass by, waiting to be able to stand. Waiting to be comfortable enough to fall asleep. Waiting for my body to relax, for the imagery or the breathing or the distraction or the medication to do enough for me to continue on.

 

It is the translation of a 1-10 scale, one that I am often asked to repeat, when I’d rather forget it exists.

 

Three or four is a great day for a run.

Five means the gym and an article written, a deadline met.

At six, I can drive my kids to school and yoga can calm my body down.

Seven and my focus turns inward. I take the wrong turn, the wrong exit, because my energy is absorbed by breathing…..standing…..driving.

I double over at eight, unlikely to stop the trajectory of pain. At eight, I better get home, and quickly.

Nine means I’m stuck in a child’s chair in a classroom, or a couch at a friend’s house or the floor of the clinic at work, reliant on….someone……to get me home if I haven’t made it there yet.

At ten I hear ambulance sirens.

 

It is hours and afternoons and days lost.

 

It is a constant calculus, a determination that yes, I can keep walking for the next 20 minutes, that I can keep standing for the next three hours, that I can still drive and cook and write for the next five. Sometimes it is the knowledge that I can’t move for the next five hours. Or ten hours. Or two days. It’s learning that there is nothing to fix and nothing to change and nothing to do but wait.

 

It is 21 medications, two surgeries and a dozen euphemistically named procedures.

 

It is medication trials that run on, sometimes for a day or two, sometimes for a month or two, always bringing new side effects but never the desired effect. It is “no really, this won’t make you feel groggy/feel sick/feel tired…..it did? Sometimes it does.”

 

It is 13 medical practitioners and countless nurses, assistants and schedulers.

 

It is the amazing doctors, nurses, physical therapists and others, people who have helped when they could and offered support when they couldn’t. It is three women in three specialties who have smoothed my transition more than they know, and more than I can say, by their skill and grace and humanity.

But it is also egos and assumptions, with occasional doctors who are more concerned with what they think should happen than what actually works, with hearing their own voices instead of mine.

It is understanding and misunderstanding and learning to be my own best advocate. It is believing that sometimes the best course of action is no action, and then convincing myself to search again for answers and options.

 

It is placing value and managing expectations, accepting that doing some is greater than doing none or all.

 

It is learning that I can’t do everything, many things or most things. I can pick three-areas I devote my energy with varying success. The rest has purposely fallen away. It is choosing to stay active, to nurture relationships and to keep learning. It’s not a perfect science, and there are always days I fall short. It is deciding to write an article but skip a PTA event, no matter how often I am asked. Admitting I had to do less gave me the space to find my center, to find the eye in the midst of the tornado and to move forward.

 

It is choosing to enjoy the moment, even if the moment is harder to come by.

 

People in Seattle appreciate the summer in a way I’ve never seen in other locales. After the general absence of the sun for nine months, we embrace every chance to run, hike, bike, sunbathe, swim, walk, shop, eat or lounge outdoors. We revel in the perfect temperatures and the abundance of activities. This is the mindset I’ve adopted after six years of being uncertain how tomorrow will fall. I have learned to find joy in the success of those I love, and I appreciate my own adventures even more.

 

Politics, By Way of Nashville

Because sometimes, we all need to laugh at politics or parenting or life, I present to you:

The Day I (Really) Should Have Known Trump Would Win

Two weeks before the election, a friend and I went to Nashville for a girls’ weekend. Nashville is a vibrant city, filled with young people, artists and musicians, all hipper than I will ever be. The bartender in one of the trendy restaurants, a recent transplant from San Francisco, told us that 90 people a day are moving to Nashville. While I didn’t check his numbers, it’s clearly an up-and-coming city.

One night, we wandered “South of Broadway”, with its Honkey Tonks-bars and clubs where amazing Nashville musicians play for tips. Like Goldilocks, it took us a few tries to find the club with the right fit. The first bar was too hottie, crawling with bachelorette parties, the second too filled with sleaze. The third was Layla’s, a casual music club and the home of Nashville Hillbilly Music, according to their sign. We grabbed a spot at the front of the balcony bar, and chatted with an older couple next to us.

They were gregarious and easy to talk to. They had been visiting Nashville from the mountains in North Carolina for years, they said. They told crazy stories about New Year’s Eves on Broadway and lamented that lack of dance space in the bars since the tourists moved in.

Thirty minutes into the music, the husband, who was a couple drinks in by now, leaned over to me and whispered, “So, who are you going to vote for?”

Me: Shocked silence.

I live in Seattle. I believe in marriage equality, in women’s rights and racial harmony. I want a ban on assault weapons, laws that support reproductive rights and legal pot, even if I’ve never tried the stuff. Hell, I drive a Subaru and I’m not actually into country music. I am a walking liberal stereotype. I know this.

I tried to change the topic, to steer the conversation in another direction. I tried to pivot.

It didn’t work. “No, seriously, I want to know. Who are you going to vote for?”

Me: Uncomfortable silence.

I told him that I thought that politics and religion should stay out of the bar.

“Now I’m really curious! Who are you voting for?”

Finally, I told him I was a woman from Seattle, and those two facts alone should point him in the likely direction of my vote.

Which is when his wife leaned over and said, “But do you like facts?”

Yes, I told them, I do. I do like facts.

There was a pregnant pause. Then, they both started to talk at once. “So, who are you voting for?” he said. “Do you care about Benghazi?” she said.

At this point, my friend, also a walking liberal stereotype, started eyeing the door.

We had a moment of reprieve. Two young guys on the other side of North Carolina couple jumped the conversation, to shout their support for Trump. Then another. And a few more.

There we were. Just two liberal 40-something gals at a spontaneous Trump rally in a bar in Nashville, the town that is young and hip and artsy and full of musicians and transplants from all over the country.

Right there. That’s the moment that I should have realized what this election would bring.

I leaned over to my new friend and his wife.

“If you are going to run us out of the bar, could you give us a little notice? We just want some time to get ahead of the crowd and get down the stairs.”

I was enveloped in an inebriated hug. “We’re not going to chase you out. You’re an American. I’m an American. We gotta get along. Also, my wife and I are going to steal Johnny Cash’s mailbox tonight.” Then he high-fived me, repeatedly.

Everybody returned to the music, except my Johnny Cash super-fan friend. He proceeded to tell me, in great detail, the elaborate plan to steal the mailbox. Where it was located. Why it had not yet been liberated from its legal home. How he and his wife were the perfect people to own it.

He was hilarious, although possibly not covert enough for his operation. I left shortly after and on my way out, I told his wife good luck with the Johnny Cash mailbox mission. Her mouth dropped open. “I can’t believe he told you that!” Then she hugged me goodbye.

I don’t if they ever managed to get Johnny Cash’s mailbox. But if it’s gone, I don’t know anything about who took it or where in the mountains of North Carolina it might be. Because I’ve got their backs. Just like they had mine.