7 shows I will binge watch until I die

1. The West Wing

President Bartlet, I love thee. Can we elect you this season instead of our current option? (We’d take Santos too. And probably Arnie. Or Charlie. Or C.J. Or Sam. Maybe even Toby. Or the call girl turned law school grad whose name I can’t remember right now. Seriously, any of you – in character, of course – would be preferable.)

2. Gilmore Girls

I love me some snarky fast-talking women. Did you know that the scripts for this show were often twice as long than scripts usually are because of the conversation speed of Rory and Lorelai? Sure, they hit a slow patch in Season 5 or 6, but I don’t even skip those.

3. Friday Night Lights

Can Tami Taylor be my best friend? I kinda love her.

4. TIE: Unbreakable Kimmy Schmidt & 30 Rock

 Comedy. Gold. Tina Fey, I love you and what you bring to this world.

5. Anything by Shonda Rimes

Shonda is a visionary, and her shows are daring and full of heart. Also, her contribution to increasing racial representation of minorities in prime time, in roles that aren’t sidekicks or stereotypes? Ground-breaking.

6. Friends

The one I can watch all the days.

7. Awful teen dramas.

Dawson’s Creek. Pretty Little Liars. Switched At Birth. Make It or Break It. Need I say more?

(I did draw the line at The Secret Life of American Teenagers. Even I have some standards.)

Okay, y’all: Enable my bingeing ways. (After all, Mama's got a lot of laundry to fold, the Olympics are still a couple weeks away, and I'm almost done re-watching all of The West Wing. Again.) What else should I add here? Bonus points if the cast isn’t super white (but no judgment if it is, because, well, see most of the items on my list).

(Final note: Sorry to break your hearts, but I just couldn’t get into Parenthood. I tried. Really, I did. Also, I love crime shows, especially NCIS and Bones, but binge watching those isn’t as enjoyable when you know whodunit... but I'll gladly watch it all the way through one. Oh, and one last thing… I can’t handle violence well – hello, PTSD – so while I could make it through House of Cards, I couldn’t do Breaking Bad or Jessica Jones and I haven’t even tried Game of Thrones or The Walking Dead.)

So, whatcha watching?

9 reasons I’m being more selective about conference travel

In the past week, I've turned down two speaking invitations for fabulous events. I wanted to say yes - oh, how I wanted to! - but no was the clear answer for this time and stage. I even tried to convince myself I could do one, and I texted someone I trust deeply for advice. Her reply? "I think you already know the answer but you don't want to admit it to yourself."

Welp.

She was right. I did. So I wrote the organizer to apologize that I couldn't come this year, and then I found myself doing the same thing again a week later. And I grieved, sad to miss these phenomenal events, disappointed that my humanity means I can't do all the things I want to do, and - to be honest - embarrassed to admit my ego was bruised of not getting to be share about traveling to Seattle and Chicago this year. (Another year, I hope, that will all be different!)

speaking at Bifrost Arts' Cry of the Poor conference in Philadelphia in 2013, still one of my all-time favorite conferences ever

speaking at Bifrost Arts' Cry of the Poor conference in Philadelphia in 2013, still one of my all-time favorite conferences ever

Last year, I traveled all over - Seattle. Charlotte. DC. Orlando. Durham. South Texas. DC again. Nashville. - all while holding down the fort back here in between and beginning some intense therapy work to process through past traumas I had hidden away, hoping to ignore forevermore. (It doesn't work that way. The pain demands to be felt eventually.) So why - after making all that work - am I stepping back now?

1. Writing is my first passion.

Friends, colleagues, and strangers keep asking when I’ll write my first book. I have several proposals I’ve started over the years but then set aside. I meant for this past year, with all the kids in school for the first time, to be devoted to writing. That didn’t happen. I love to travel, but it takes a lot out of me. And I generated a lot of new speaking content this year, which took time. I’ve realized to get back to writing, I need to step back from speaking so much.

2. I need to make space for the personal work I’m doing.

I’ve been open about being in therapy. Given some recent vulnerable posts, some of you can guess some of the topics. Others will never be offered for public consumption.

My therapist is a total Godsend, but there’s no way she can make this process easy for me. Trauma work is hard. I’m learning a lot, realizing a lot, healing a lot, and grieving a lot, all at the same time. I need space in my life to give myself the time needed for this important self care.

3. I’m not convinced ministry breakout sessions offer a large enough impact to justify my travel.

Consider a children’s ministry conference. I’m the special needs ministry guru, often the only one. Every goes to the main sessions, which cover the topics deemed most universal (and, to be honest, which feature the speakers whose name recognition lend credibility to the conference as a whole). Inclusive ministry isn’t a main stage session. It should be, given the stats and the need. The people who come to special needs ministry sessions? They’re mostly the people who already see the need to welcome families like mine and would seek out the resources we provide at Key Ministry, whether they ever met me or not. The people who are still explicitly turning away special needs families or implicitly making them feel unwelcome? They need to be challenged from the main stage.

Because I don’t think it’s worth my time to be the lone disability advocate preaching to the choir in a small back room, I’m starting to say no to conferences unless special needs issues will be addressed in the main sessions. I love being the one to do so, but I’m totally fine if it’s someone other than me. I’m just certain that the impact needed for the continued growth of inclusive ministry means that the topic can’t be an afterthought or sideshow.

(For other conferences, smaller settings work wonderfully, so I'm not opposed to presenting workshops ever. But I'm finding that I must evaluate the impact before I can say yes, especially for longer distance travel. And I don't want to be a token voice on disability issues just so the organizers can say they care about families like mine, when nothing in their main session content demonstrates that.)

4-9. Jocelyn, Patience, Philip, Robbie, Patricia, and Zoe.

One has recently started coming to me, little hands balls into fists against skinny legs, and whispering, “Mommy, I need help. I’m having feelings.” Another crawled into bed with me this past weekend to cry in my arms over the ending of the book Bridge to Terabithia. I want to be here in moments like those. My little people are ages 4, 5, 7, 7, 9, and 9. I already have the rule that I don’t travel on their birthdays. But I want to be around on more of the other days too.

(That said, I think it’s healthy for them to witness the work I do. It matters. But I always want them to rest assured that they matter more. In this season, staying home more does that. In another session, I might be able to travel frequently while still affirming their value as greater. It’s a balance, and this is where I land right now.)

I hope none of this sounds like I’m ungrateful for the myriad of opportunities I’ve had. One glance at my speaker page will reveal that I’ve gotten to go some amazing places with some inspiring people. I’m beyond thankful.

I’m also certain I will travel. Just not as much in this season. God designed me to need rest too, and my kids and writing deserve more of me right now. 

NC, it’s time to do better for our most vulnerable kids!

My daughter Zoe is a delight. She loves purple. She can sing most of the words to Hillary Scott’s Thy Will, Frozen’s Let It Go, Taylor Swift’s Bad Blood, Daniel Tiger’s If You’re Sick, Rest Is Best, and David Guetta's Titanum. (Her music tastes are nothing if not varied.) She likes to boss her siblings around, and she thinks it’s hilarious whenever someone falls down. Also hilarious to her are knock knock jokes and poop humor.

Oh, and she has cerebral palsy, doesn’t walk or sit independently, and requires full support for almost all activities of daily life. As such, she qualifies for CAP/C.

As I shared in a Facebook post making the rounds, years ago North Carolina created a Medicaid waiver program called CAP/C for medically fragile kids. While the care provided to each child through CAP/C is expensive, it was designed to save the state money and care well for kids by keeping them out of institutional settings. The full name of the program - Community Alternatives Program for Children - even tells a bit of that story. The program is meant to provide community-based alternatives to residential care. Our daughter Zoe qualifies for CAP/C and has received services for nearly two years.

CAP/C has been operating on 5 year waiver cycles. The last waiver expired in July 2015. (Yes, you read that right. 2015.) Since then, the state keeps offering new dates and then those deadlines pass. A month or two ago, you might remember a flurry of news articles about the draft plan they put out, which would have severely cut services to kids and been detrimental to families. They say they're listening and withdrew that plan, which was good, but? Now we still have no plan in place. There's still no new legislation to replace what expired a year ago. Families are being served under the old waiver, but some services - like vehicle modifications - are frozen or limited for now.

Let me word this another way: Because our state government can't or won't do their job, families are being penalized.

In the image above, she had just gotten her purple chariot, aka her motorized wheelchair. So far, the chair hasn’t left the house. We don’t have a lift yet for our van, so she can’t take it to larger places than our home to practice, much less to church or school. Most of her physical therapy IEP goals for next year are based on using her motorized chair at school. We're even changing her school placement to a larger location from a smaller one to better accommodate the chair. But we can't get her chair to school or church or larger spaces to practice without a lift for our van. So it's stayed home since its arrival in January. 

Under CAP/C, getting a lift for our van should be no problem. Vehicle modifications are a service covered by CAP/C. But there’s not a new waiver in place. Because of that, they're refusing to even process our vehicle modification request, which means we don't even have a refusal to appeal. The request has been sitting and waiting for more than a month. We're stuck, and our kid doesn't have what she needs, because for the past 12 months, the state has failed to do their job to put a new waiver in place.

This isn't okay. This isn't acceptable. On my watch, this isn't going to continue.

Ironically, earlier this year after we had gone more than 90 days without staffing Zoe's in-home health care aide - a provision covered by CAP/C - DMA tried to remove her from the program. We appealed, taking the case to court, where we learned in cases like ours, law places the burden of proof on the family while the state has the resources and controls every aspect of the process. That didn't strike me as fair or family-centered, as CAP/C claims to be, but my summer job as a legal assistant in college served me well as I prepared briefs of my own - citing both current law and the proposed draft at that time - to support our side. Ultimately, on the day we were before the judge, DMA and the assistant district attorney representing their case asked for a settlement discussion prior to presenting the case. So the judge stepped out, and they conceded that I had provided sufficient documentation so they were reversing their decision to threaten Zoe's position in the program. 

In other words, a few months of delay in filling Zoe's home health staffing meant a months-long court battle with the state. But a year of delays from the state means we're supposed to just wait patiently with no recourse. That's why I'm speaking out now. The double standard is appalling.

(Furthermore, I didn't feel like I could speak out before because they were trying to remove my child from the program, and she needs and deserves those supports. We didn't want to rock an already rocky boat. And our efforts in the appeal meant we didn't even have the time to start working on the vehicle modification request - which requires a long process of the family getting a minimum of three similar quotes from state-approved vendors who are notoriously hard to contact and work with - until after we won our case.)

If you're in NC, contact anyone you can in the state government - the governor, state senators, state representatives, the NC Division of Medical Assistance (DMA) office which is part of NC Health & Human Services, anyone - to ask when the state plans to meet a deadline that passed 12 months ago to reinstate full CAP/C services to help our state's most vulnerable kids. This is NOT okay.

This is my daughter Zoe. She deserves better than this. 


Update 1: We were told yesterday that our county's nurse consultant from DMA told our case manager that in June, the federal government - which, from what I understand, provides some of the funding for CAP/C - stated that everything in queue has to be approved under the previous waiver's approved amounts with no new funds available. As such, while Zoe should have a full budget for this cycle, she's limited, they say, to $3,000. (That said, we don't even know if that's accurate or not, because our request hasn't even been processed in more than a month. So it hasn't been denied, which means we can't appeal.) Meanwhile, a mom from another county just contacted me through Facebook to share that they began their van modification a month and a half ago and just dropped it off for the work to be done this week, having been approved for around $18,000 in modifications. (Meanwhile our full request, for the lift as well as a valet seat which would allow transfers to go more smoothly and - ultimately, hopefully - be more independent for Zoe without our help as much, is for $12,280, of which $3,532 is the lift. So if we only got the lift at this time - which is the more pressing need - then we're only fighting the state over $532. But, again, since our request hasn't even been processed, we don't even have the promised $3000 available to us. 

Sigh. C'mon, North Carolina. This shouldn't be so hard.


Update 2: A few news outlets are showing some interest in possibly doing a story about this. Nothing is firm yet, but I'm totally game for that. I hate to have to make some noise to get the state to do what they should, but I will if I have to. I'm speaking up not only for Zoe but for so many other kids whose parents might not be able to do so, because of lack of time for working parents or lack of education for those who don't even know they can challenge the state or any other reason. All our kids deserve better, not just Zoe. 

when someone cared enough to ask if I was safe at home

“Is she safe at home?” my friend’s friend asked in a hushed voice as I headed down the hall to the restroom.

I am, but her concern was well placed. The weekend before I had lost my balance while misjudging the distance between my body and a piece of furniture in a spectacularly grace-less moment, slamming my arm hard against solid wood. Two days before my dog had jerked her paw against my chest, leaving a slight purple mark there. And the day before my son – excited about a video game – pointed at the screen in my lap, scratching his nail against my cheek.

This picture only captures my arm that day, but you can see what drew concern from her.

I don’t know her. I probably won’t see her again. But? She cared enough for me to ask a mutual friend the hard and awkward question, “Is she safe at home?”

I am, thankfully. My husband is a refuge for me and our children. But other women and children (and men too) aren’t safe behind closed doors. I wrote about domestic violence in the church for Key Ministry a couple weeks ago, and then I came across this last week.

Abuse happens. Your friend might not say anything, but her injuries might speak for her. Be willing to engage in further conversation when they do.

If you’re wrong – like that well-intentioned friend of a friend was – there’s no harm done. But if you’re right, you might just open a needed door for healing and safety. If you're right, your one question might be the beginning of her rescue.

Let’s all be brave enough to ask the hard questions when our gut senses something is off. It might be weird, sure. But it might just save a life. 


Edited to add: A friend and former co-worker of mine commented on my Facebook page about her own experience in an abusive relationship. I thought what she said was so powerful that I'm bringing it here. In Amy's words, "I would add that sometimes a woman tells others what she wishes were true - that she is safe - when she actually is not. I had friends gently but persistently ask multiple times, and when it turned out I was not indeed safe, those women were there to help, no judgement, no "told you so", so just immediate help. It's better to ask and be wrong, multiple times even, than to not say anything at all. Ask. And keep asking."

Yes and amen. Ask. And keep asking. And then be there to help, creating a non-judgmental space for your friend when she's ready for it. 

Here's to tender hearts!

Y'all, this week we got some hard-to-swallow news. It wasn't unexpected, but it always hurts to read stark evaluation notes on a child who is so much more than a diagnosis... so my heart was tender today. It would have been sensitive, even without without all the harshness of the past couple weeks tenderizing it day after day before this, but the culmination of everything left me wanting to curl up in a fetal position.

But I went about my day as usual, crossing paths with person after person, most not knowing how raw I felt.

Even this morning selfie with my beloved doesn't give away that I was barely treading water to keep my head above the whirlpool of emotions in which I found myself this morning...

And it struck me, as it often does, that I don't know anyone else's story either.

The man at Bojangles from whom I bought our meal, who did all he could to bring forth smiles from me? The nurse who came for our quarterly assessment of Zoe's care needs? The vet I spoke with on the phone? The mailman who handed me a package? The volunteers who checked us in and then saw us off at day camp?

I don't know their stories. I don't know their raw places. I don't know if they just want to curl up under the covers for an extended holiday like I do.

But I know love. I know compassion. I know Jesus.

So I'm going to do all I can to show all I know to a world in need of it. A smile. Eye contact. An encouraging word. A countenance that says, "I see and value the humanity in you, my friend. We're in this together."

Hate doesn't win. Trucks driven into celebrations don't get the last say on humanity. And evaluation notes don't change the awesomeness of the kid about whom they're written.

After all, maybe our hearts are meant to be tender. Maybe that tenderness isn't the problem; maybe all the hard places we've cultivated to protect ourselves are. Maybe we're supposed to hurt and grieve and mourn sometimes.

Maybe, just maybe, we're not doing it wrong when life seems too much.

Here's to tender hearts, to making a more compassionate world one encounter at a time, and to kids who are so much more than what any label says!