That's just how I roll.

The Chick-Fil-A controversy is really interesting to me, and gives me great hope. Hope, yes, I think that's how I'll describe it anyway, but for most of my life, when the same idea has been snidely tossed my way, it may be more aptly described as "self-righteous". At least that's what I've been told. I've had the one-person boycott going for years you see.  Pepsi launched an offensive ad campaign, I wrote letters and stopped drinking Pepsi for FIFTEEN YEARS. I only really started drinking Pepsi because my brother was their HR Mgr for a while and now it's all I can get at work, but a good decade and a half Pepsi free because of an ad campaign where a computer generated mosquito landed on a can of Pepsi and launched into the Rolling Stones' hit Brown Sugar. Yep. It's a really offensive song to today's sensibilities, but apparently was originally written as a satirical statement about the civil rights movement of the 60's. I felt that reintroducing the song in a different political climate was naive and dangerous for Pepsi to do, I told them, they sent me a coupon for free Pepsi, which I still have. Now, let me be clear. I'm not African American. I wasn't around in the 60's, and have very little opinion about that era's British rockers. By anyone's definition, I didn't have a dog in that fight. I'm human though. And as a human I was deeply shocked and offended by a company's marketing decisions, and I reacted the only way I knew how--I stopped supporting their business. And, yes, that included Taco Bell, KFC and Pizza Hut since they were owned by Pepsi's affiliate Yum! brand, and when a restaurant only offered Pepsi, I ordered water. I was outspoken and a bit insufferable. It's what I do. 

When I fell in love with Aaron, one of the reasons was that he too had a list of companies that he just wouldn't support. (Many of you may be familiar with our Disney-free household...or at least it was Disney free until Henry showed up!). So, when I told him we needed to switch our life insurance because Knights of Columbus were sexist and homophobic, he was totally on board. We don't shop at Walmart because of their inequitable treatment of women. We do support Culver's because they are a strong family centric company that respect and include families of all types. We put our money where our mouths are and always have.

Now, full disclosure, the "money" in question is not substantial, our monthly grocery budget is not being missed by Walmart, and I'm sure Pepsi didn't notice a dip in sales by my 15 year hiatus. But, life is all about choices, and when a corporation makes a decision that personally makes me sick to my stomach, what other choice do we have? So I'm applauding the movement to boycott Chick-Fil-A. I applaud the movement to speak with our pocketbooks, always, and support those whom you deem worthy of support. There's no reason to wait to vote until November every other year, you can cast your vote as a consumer thousands of times in that time frame. Some call it my soapbox, or call me combative and self-righteous. I think those are probably not too far off the mark. I am not the girl who doesn't say something when the guy at the next table makes an offensive remark. I'm not the girl who lets a good waffle fry trump the relationships I have with family and friends who are being written off because of whom they love. I'm not the girl who looks the other way because it's not my battle to fight. I'm just not. I never will be. Love me or leave me, that's just how I roll.

Hug your kids/partner/pet, and today try to support a business that supports something you care about. And tomorrow too, and how about the day after that...

b

Celebrating, for now.

Today was surreal. I'm so familiar with falling short, with almost but not quite, with the right idea but the wrong implementation that I just can't trust success. And that's what this is, right? A success? The Affordable Care Act has been defended as constitutional by the highest court in the land. Amazing. Thrilling. A relief.... yet....I'm stunned by the visceral hate I see all over, from people that I know and love, and have known and loved for years. I wonder if I've changed, or if they've changed. If I'm somehow tainted by my experiences with Henry that I can't see the clear picture, that I'm too young or naive to understand how the world works and that upholding the individual mandate is a slippery slope to the Federal Government taxing individuals who choose not to get abortions as a form of population control. (Seriously, a friend of mine from high school posted this argument, and I'm sure he believes it.) 

I was at the village's pool with my family tonight, giddy over the day, and when a friend asked why I was grinning I started talking about what an enormous relief the SCOTUS ruling has been and how for the first time in a long time I'm not anxious and worried about what Henry's future will look like. A woman overheard us, audibly harrumphed, and then moved to a different pool chair. I know her. I sit on the library's "Friends" board with her. I frequent her business and get caught up on the town gossip. And she harrumphed at me.

So here I am. Celebrating, feeling that sense of exhaustion that comes with the end of the race... no more wondering, no more sleepless nights fueled by anxious worry, but a sense of confidence that comes with the knowledge that Henry's lifetime of ongoing medical expenses will be covered by our insurer, or someday his insurer, regardless of his pre-existing conditions. And in the next room, Mitt Romney is on television talking about how the first thing he's going to do as President is repeal the ACA, and pundits are pontificating on the idea that since it's considered a tax, it will only take a vote of 51 in Senate to repeal it, and not the super-majority that seems to be required for everything else. And I don't know what to do. 

I don't know when we turned into a country that is this divided over absolutely everything. I'm not accustomed to screaming matches over immigration, health care and public education, and yet I've found myself in each of those positions in the last week alone. Every issue is a high stakes battle in which everyone is heavily vested. It's exhausting, it's incredibly stressful, and it's breaking my heart. I've lost friends that I thought I'd have forever because I support the right to collectively bargain and they were livid about teacher strikes (though their children were not of school age, and the teachers in their school district didn't strike...). If you had asked me three years ago how passionately I felt about collective bargaining, I probably gave it as much thought as picking out the color of the golf ball at the mini-golf place in Spring Green. Of COURSE I want the one that matches my outfit, but if Charlotte wants it too, she can have it and I'll take the green one instead. No worries. And then suddenly, someone takes away the option of choosing the color and I'm frustrated, but more interested in the process, and what else could be taken away without any conversations about it and then I'm a "socialist" for insisting I choose the color of my ball, and person after person called me naive and ignorant and young... and I think that they must have felt like that at some level all along, and I just had to let them go. Life's too short to get hung up on people who won't let you choose the color of your ball.

But affordable access to health care is something that I'm pretty picky about. And it's not because I'm naive about a broken system where illegal immigrants are utilizing all of the services and schooling and not giving anything back to society. Not because I'm ignorant to the notion that unemployed mothers have more kids to milk disability and social security payments so they don't have to work and can live off welfare checks. Because THOSE THINGS AREN'T TRUE. That isn't what happens. In spite of what you may have heard from that one guy's sister's neighbor who had a cousin who did that very thing. Look up the statistics. (don't wait for FoxNews' report, actually look up the data!!!) It's simply not true.

The Affordable Care Act asks people to have health insurance. It says that if you can't afford health insurance, insurance will be provided for you, and the cost of that insurance will be subsidized. It also says that if you can afford health insurance, and you choose not have health insurance, you will be penalized in the form of a tax because if you can afford health insurance and don't buy it, and then get really sick, or get in a car accident because an 86 year old woman doesn't see your car and pulls out directly in front of you, well, then the system won't work. Your stupid uninsured kiester will rack up thousands in health care, because they took an oath to save you, and then those costs will get passed on to everyone else so the hospital can balance their budget. If EVERYONE has health insurance, hospitals can eliminate their budget line for uninsured patients and their expenses go down, so their costs go down. Everyone wins. Of course, that's not the only thing this amazing legislation does. It protects individuals with pre-existing conditions from getting dropped from their insurer, and it allows young adults to stay on their parents' policies until they are 26 years old (I know quite a few actors who are particularly thrilled with this arrangement.)

I don't get why anyone would be upset by this. It just doesn't make sense to me. It certainly doesn't feel like a first step to the government securing complete control over our bodies, religions and households. I don't get it. I see a protection that ensures Henry will continue to get treatment for his cerebral palsy, until he's 26 no less, and a protection that extends to everyone equally, for all of the Henry's of the world.

And I go back to the question that brought me here, but of course I've changed, as have they. We are all shaped by our experiences, and we react based on what we know. I know Henry. I know our journey through the health care system, how that journey led us to our legislators, to learn more, to become advocates... of course I've changed. Perhaps I'm not properly exploring the experiences that lead someone to believe that forced abortions are the end result of the ACA act. But life's short, the pool was calling, and that's a stack of crazy I'm not touching with a ten foot pole.

Hug your kids, partners, pets, and... while your at it... http://www.barackobama.com/ is where you can contribute to President Obama's re-election campaign, should you be so inclined. 

-b

What's in a picture?

Henry sees the neurologist annually. We used to go more frequently, but seizure free means neuro free, and I'm happy to let both of them go. During our final appointment yesterday, he went through the drill, 34 pounds, 38 inches tall, good heart rate, blood pressure, and look at those eyes, and are those dimples?!? (somehow that ALWAYS enters the conversation about this point). Our brilliant doctor whom we adore, really, then starts going through the tests, copy this drawing, name this shape, identify colors, to check on development. He asks Henry what his favorite foods are (pizza and 'nanas) and what he likes doing most at school (drawing, and playing with "kids"), then put him through the physical checklist. Walking? check. Running? Jumping? Check. Check. Dancing? Oh yeah. Demonstrating his verbal skills left Henry belting out "Am I a Muppet or a Man?", which our neuro thoroughly enjoyed. Then he looked a little confused, and brought up Henry's original CT scan, taken the day after he was born. I've never seen this particular image. Well, that's not entirely true, I vaguely remember having seen it in the exhaustion and stress of the NICU. I've certainly seen it reflected in the eyes of Henry's pediatrician who treats Henry with a little bit of awe every time he visits. I've heard the "I'd never believe it if I didn't see the scan myself" from his colleagues we've visited occasionally over the years, as it seems Henry's been the subject of a staff meeting or two. I've just never really seen the image for myself. Until yesterday. 

I know how amazing my little man is. I know with every fiber of my being that he's going to be ok. I hear the neuro say that now that Henry's three, his hand spasticity is largely permanent, that the window we had to improve it is closing quickly, and I know he's wrong. He doesn't know Henry. He doesn't know how stubborn this kid is, what a great problem solver, how epic his life will be. What he does know is Henry has half a brain. 

The image showed that the left side of Henry's brain was completely wiped out from the stroke. The clot that passed through the placenta and lodged in the middle cerebral artery hit the junction of the arteries and broke up, sending a clot down the anterior artery as well, destroying his entire left brain. The image was impressive. The right brain, even in the newborn, even on a CT scan, you could see the white matter/gray matter contrast, the different lobes, the intricacies of the color variations. The left brain...huge areas (accounting for about 80% of the total area) were just dark. No contrast, the only color variation was the swelling, evident on the CT scan, that showed the left hemisphere's swelling pressing into the right. 

Holy shit. My kid has half a brain. 

Fortunately, I didn't know that until yesterday. So I didn't know that based on Henry's CT scan, he'd never be able to walk or run, certainly not dance. I didn't know that language was not just something he lost in one focused "brocca" area, but in fact, that the entire left hemisphere was gone and according to his scan, would never return. I didn't know that was supposed to happen, so we didn't let that happen. I didn't know better, so we worked on his muscles with intensive PT and OT, we read stories, we turned everything into a therapy session, we were so successful that he's not once qualified for speech therapy because he's cognitively ahead of the typically developing 3 year old--he understands everything, he just doesn't say much. And then he started school, and sticking him in a classroom with other 3-year-olds challenged his verbal skills to catch up in the best way, and now they are all on equal footing. Verbally, cognitively, developmentally, he's not delayed at all. 

That's why our neuro looked confused. In his expert opinion, there's no reason that Henry's CT scan at birth would reflect the independent, VERBAL, capable, MOBILE, dancing singing toddler in front of him. Impressive indeed. That's my little man.  

Yesterday was an emotional roller coaster. The image sticks in my mind and I can't seem to shake it. I'm glad I didn't see it three years ago, as I don't know that we would have had the energy to get us here had we known what we were up against. Our neuro said that now, they do MRIs in addition to CT scans in the NICU. That provides a clearer image, something that parents see on television so can then recognize in their own child. I'm grateful they didn't offer that of Henry. I appreciate the fuzzy vagueness of the CT scan that hints at but doesn't dictate the future. 

Hug your kids/partner/pets, Henry has dance class this morning and we don't want to be late. 

b

What the Affordable Care Act really means to me

Two years ago, I became an advocate. I called my legislator, Representative Ron Kind, to urge him to vote for the Affordable Care Act and then sent him a thank you note after he voted in support of this massive piece of legislation. I wrote that letter as a mom, an exhausted, terrified mother who couldn't bear the thought of her son being excluded from a family insurance plan based on his medical condition.

The story behind the letter:
We switched insurance providers between December 2009 and January 2010 and the new insurer denied us coverage because we were still covered under the old insurer, even though we had paid premiums, completed paperwork, etc. to enroll with my employer's plan as directed. I didn't formally sign the first insurer's termination of coverage document though, I just called them and told them, and at the time they said that was enough notice. So with a 1 year old who was still struggling with intermittant seizures, who was receiving weekly OT and PT, the thought of a paperwork snafu giving our new insurance provider an "out" so they didn't have to cover any of Henry's care seemed completely outragous, overwhelming, confusing, just wrong. That was a "what if" though, that didn't happen. It was day 17 of my first 30 days of coverage when we realized the paperwork wasn't in order and we Fed Ex-ed original documents to Dallas to make sure that they were received in the "window" and they sent back the termination agreement and everything was in place by day 23. No problem, really. A week to spare.  But the chaos of that time, that feeling of helplessness... not something I'd like to recreate. And the idea that a piece of legislation would take that feeling off the table, forever? Definitely something worth writing about.

The letter: (posted on Ron Kind's facebook wall with the above image)

"My son had a stroke, before he was even born. He wanted to personally thank you for passing this historic healthcare bill, but he's 13 months old, and between juggling neurologists, OT, PT and speech therapy, he hasn't found the time. Let me be his voice. As a voter, as your constituent, as a mother, Thank you."

 

Then... Ron Kind's campaign called and asked to talk to us. We met Rep. Kind, met his lovely parents who hosted us as we filmed a brief commercial in their backyard. We named a rooster "Ronbo" and shed tears when it was time to butcher. It was a fun adventure, that in our minds, seemed over.  But it wasn't. 

 

Because then the commercial rolled out, and Henry's face was plastered on banner ads all across the internet. People stopped me in the Piggly Wiggly, the Cenex, the Shell, at church, the Hometown grocery store, the Shed... I don't know what I expected, a smile and a nod maybe? But what I got was questions. Questions from everyone about the ACA, and how it affected our family, and how it was being funded and if it would solve our health care issues and how it would impact Medicare, Social Security, and what about small business owners... And that's when I started really working. I engaged in these conversations, trying to inform more than anything, there was so much misinformation and fear surrounding it, just having a conversation with a normal person went a long way. 

 

Those conversations, that involvement, put us on the radar of our county's birth to three program and Aaron quickly agreed to sit on their Parent Advisory council. From there we connected with the state's B-3 services and enrolled in their "Parents as Leaders" program. Those PALs retreats in 2010 and 2011 introduced us to organizations like Disability Rights Wisconsin and the Bureau for People with Developmental Disabilities, and better yet, connected us with other parents of special needs children who have quickly become some of our strongest friends. It was at a PALS retreat where this video came across my facebook feed:

This is when I realized that Representative Kind was still fighting for us, still working for us, so why did I so quickly move on?  When his campaign contacted us recently, two years after the ACA act had passed and asked to reprise our story I quickly said yes. Yes. YES. Well, Yes, BUT. Our story has changed you see... We are forever grateful for the ACA and for elected officials that put the needs of their constituents over big business. That won't change. But, through all we have been through in the past three years, I no longer feel helpless, overwhelmed, or scared when I think about our future.

 

I feel empowered.

 

The ACA provided us with a safety net that we hope we never have to use. But having that safety net in place has spurred us to create other nets along the way. Higher up "nets" (as long as we're using that analogy) so we don't have to fall as far. In the state of Wisconsin, Developmental therapy isn't covered by private insurers. There was an autism mandate that passed in 2009, so autism spectrum is covered, but so many other services for so many other conditions just aren't. I've met with our insurance providers board, to urge them to reconsider. They denied that request. Then I met with our state representative, Howard Marklein, to look at the possibility of moving forward with a Birth to Three mandate, a state mandate that would require insurance providers to cover developmental services for children who fall under the B-3 umbrella. While he and I have very different motivations, he gave me a forum to speak and his aide, Crystal Lee has followed up with me over the past year and continued that conversation.  Locally, I've created a program at our library, inclusive for kids of all abilities, and wrote a grant proposal and got that program funded. We're looking forward to reprising it this summer. I joined the Friends of the Library board, and engage with my community differently than I think I ever would have if not for everything that we've been through.

 

And most of all, I'm grateful. The Affordable Care Act really did change my life, but in a really weird way. Before Henry was born I lived in my own corner of the world, doing my own thing, and just happy as can be. Henry forced me out of that, requiring strangers to come into my home for weekly therapy, telling and retelling our story countless times, to more strangers as we networked with doctors, therapists, parents, neighbors... saying "yes" to help when we ordinarily would have said "no thank you". And then being the face of this campaign, the voice of the "mom", not only on the television but in the grocery store, school, gas station. And being ok with that. And leveraging that experience to give more back to my community, to bring more opportunities for kids of all abilities to my little village. 

 

So as the ACA turns two, and Rep. Kind's facebook page has status updates that include:

To Beth healthcare reform is more than just the numbers. She knows we have to find a way for government to be both fiscally AND socially responsible. It’s about being a neighbor and lending a hand when people are in need -- that's the Wisconsin way.

and

Beth’s experience with Henry led her to look beyond her own circumstances. She realized that everybody is going to need help at some point.

 

It's interesting to hear my experience summed up in a limited character alottment (as you can tell by the length of this post, it's a pretty foreign concept), but sure.. that's the gist of it. I don't think the ACA is perfect. I think it's a small first step. Back to the tightrope analogy, I think it's putting the lowest net in place in case everything else you try fails so you don't go smashing to the ground. But it's up to us to keep those other nets secured. To pay your insurance premiums and in return they will cover your medical needs, even the ones you had before you met them. To support and enrich our own communities, to rely on each other first, to give a voice to everyone and learn from those shared experiences. To buy local because supporting Dwayne or Judy or Frank, is more important than saving a buck... and to be in a strong enough financial position to support that decision.

 

But most of all, the experience I've had with Representative Kind and the Affordable Care Act has reinforced wholeheartedly that I am only as alone as I want to be. There's something amazing and special about small town living, especially in western Wisconsin. Sharing our story with our friends and neighbors opened the door to them sharing their story with us, and knowing each other's stories, and working together to make those stories better... for me, that's what it's all about.  

Well, that and Henry... of course! :o) 

 

Hug your kids/partner/pet and have a great day!

 

b

 

Happy 2012!

New Year's Eve. The designated night to officially turn the page on your life. Out with the old, in with the new, new chapters, new resolutions, new goals. If an on-again-off again-relationship with Weight Watchers spanning 10 years has taught me anything, it's that you have a better chance of succeeding if you make a public declaration of your intentions so your friends and family can support and not enable.  So... in 2012 I resolve:

1.  To lose weight. The weight of my worry is literally pushing me down deeper into this chair as I type. I worry about Charlotte and whether my screwed up body image will be contagious. I worry about her friends picking on her because she's a giant, but can't do anything about it because after all, she is a giant. I worry that I'm not doing something I should have to make her childhood more rewarding, fulfilling, the time she looks back on as her favorite time ever. I worry about Henry. Every moment of every day. Could we be doing something we haven't thought about? How will he change as he enters the Early Childhood program in the school district? Will he be teased? Will he cry? Will he fall when he gets tired because his brain forgets to pick up his right foot? How many stitches will he need when that does happen? Will stitches be enough? I worry about Aaron. Is he happy enough? Fulfilled? Challenged? How can I make that happen for him?  I worry about the normal stuff too.... will the bills get paid, will I have enough yarn to finish this scarf in the same dyelot, will the front porch EVER stay clean for more than 24 hours....  I have that constant brain chatter that never shuts off and that worry wears on my face, sliding my cheeks lower toward my chin. It wears on my back, in the constant curve of concern. It weighs me down.  In 2012, I resolve to weigh less. To breathe more. To not worry about everything all the time, but just about the important things at the appropriate times. To not let the weight of the world join me on the scale, and ultimately, to weigh less.

2.  To expect the unexpected. It's all about living outside of the comfort zone this year. Trying something new, pushing the bar, surprising myself by what I can accomplish. I ask for so much from Henry and even Aaron and Charlotte. Now it's my turn to step up.  I have a couple things on the calendar so far, but all ideas are welcome. Especially if there's something you've been eager to try but don't think you have the guts to do it alone. Call me. I'm there.  

Those are the big ones...  (insert "that's what she said" reference here). I want to give more back, be a better listener, be more patient, keep a cleaner house, connect more with family... and who knows, that could all happen.  But one thing at a time people. I have to save something for next year! 

Hug your kids/partner/pet, and have Happy New Year!!!!

Game on.

Here in Wisconsin November 15th marks the start of the recall of Governor Walker. The citizens of our fair state have 60 days to gather 540,000 signatures of eligible voters who are interested in seeing our fair Governor in the unemployment line. I will be gathering signatures, manning booths, doing everything I can to see this happen, and honestly believe we will succeed in forcing a recall vote. 

Now here's the thing, I believe that we get what we pay for, and he won the popular vote in 2010, and that there should be consequences, right? I get that. But, between running for the position and actually fulfilling his duties, somewhere, something went horribly wrong. If Walker played by the rules, I'd be disappointed in his performance and his decisions, but I wouldn't feel like the rug was pulled out from under me while someone punched me in the gut and peed on my leg all at the same time. It's the changing of the rules, ignoring federal regulations, the "my way or the high way" attitude I take exception with.

In my world, he is changing the structure of Wisconsin's Early Intervention Birth to Three services, the vehicle for which Henry receives his weekly PT and OT that expand his world. Eligibility for these services is becoming more restrictive, and Medicare funds that supplement county budgets to provide these services for needy families are getting decimated, with wide reaching impact. Private insurance doesn't cover anything deemed "Developmental", including PT and OT, so the only reimbursement they get for all of the billing they do is from children who are on the state's Badgercare program. If we had a private insurance mandate inclusive of all special needs kids, Birth to Three budgets everywhere would find another revenue stream without changing any benefits, but for now, parents have to make their case for why their kid needs therapy, and they are about to need to be a lot more convincing. Governor Walker is changing eligibility requirements, federally supported eligibility requirements that are restricting enrollment and reporting to the extent that federal funds may be in jeopardy. That doesn't matter to him. He doesn't want people like Henry to milk the system, to take advantage of free services that are only available for the first three years of their life. Interestingly enough, he didn't use his disdain of toddlers as an anthem in his campaigning, but that is absolutely one of the first casualties of his biennial budget.

I'm horrified at his approach to public education. I'm sick with worry about his promise to not enforce the Affordable Care Act in Wisconsin. I'm deeply discouraged by his lack of respect for career professionals in favor of appointing unqualified children of donors in high income positions. But the reason I protest, the reason I advocate, network, and ultimately want to recall this ignorant man is my blue eyed dimpled little boy and the thousands of others like him who expect more from us, from me. I promised Henry, and myself, to do everything I could to make sure he had every tool at his disposal that any typically developing child would, and our dear Governor is taking those tools away from me. Well. That's not acceptable. November 15th, we start the process to take those tools back.

I hope to have petitions with me pretty much all of the time. I am working with Joanne Vogt in Plain to canvas and collect signatures in the 53577. This is too important to just let someone else do it. Game on.

Hug your kids/partner/pet, and join me, won't you?
b

Learning...grieving...

I don't believe in a lot of things, but other things I believe in so strongly that the idea that they are up to chance, that it's all indeed random, brings tears to my eyes so quickly I can't breathe.  Today I learned another lesson to reinforce the idea that we will meet the people we are supposed to meet, when we are supposed to meet them, and absolutely everyone has a lesson to share if I'm willing to listen.

Here's my admission....It's easy to fight for kids, for children who have special needs to make sure they have schools that accomodate, nurture, support and a community that accepts, includes.  It's not easy, that's the wrong word.... it's definable. I know what that looks like, what it feels like. What I struggle with is what that looks like for the adult child. The child who has grown into an adult body but who themselves remain at risk. In need. But, with the ability to procreate, to themselves have children. What happens when a special needs child grows into a special needs adult and becomes a special needs parent? And then, what happens when that child has their own special needs? In this scenario, who's the caregiver? Who's the "responsible adult"? 

My heart breaks today for a mother who couldn't. Who just couldn't for a million reasons....  but couldn't.  My heart breaks for a society that accepts her failure and judges her as lacking, not contributing in a world she didn't understand. My heart breaks for the daughter of this woman who didn't grasp the significance of medical conditions that are rarely fatal if properly maintained, but today my heart breaks for a mother who's burying her baby girl.

And I don't understand how we could let this happen. I'm so angry and so hurt and feel so guilty. I feel so ignorant of what kinds of services are available to families like hers, and in my self-righteous indignance I demand change. What kind of change... I have no idea. I don't think that throwing money at the problem is the answer. That people with disabilities are given their SSI check and expected to manage that money, and the money for their household, just baffles me. Where are the supported living homes that are not just for the individual but for the family? I know how much I depend on my friends and family, my community to help me work through things, get through things, every single day. What kind of support network did she have? She was raising two children on her own, with financial assistance sure, but little else. Why is this the best we have to offer her?

Today it's easy to identify how much I had to learn. I just wish it didn't have to come at such high of a cost. I'm so sorry... heart broken open... listening... learning. 

hug your kids/partner/pet a little tighter today, and the next time you see someone who fits this story remember the words of Plato and "Be kind, for everyone is fighting a hard battle."

-b