Wednesday, November 28, 2012

Leap first and the net will follow

Two of my cousins are expecting babies next spring and we celebrated their growing families with a baby shower last week. First, let me give a shout out to Aunt Ellen who worked really hard to make it a great day. We went through my favorite baby shower exercise, where we tell the expectant parents our words of wisdom, and I can't stop thinking that it just doesn't stop there. I think about my family, the one I was born into as well as the ones I've grown myself and what a journey it has been for all of us. And the thing that I keep thinking is that the biggest joy of being a parent is the ability to make different decisions, better decisions maybe, when it comes to your own family. Please don't think this is going to turn into a litany of all the ways my parents failed me, it's truly the opposite. I'd love to share the lesson they demonstrated in a million ways that I hope my own children see in the family we've built.

My parents let us know early on that whatever we did, however badly we screwed up or how painfully we hurt them...we could always come home. Their door would always be open. No matter what. Now, I've tested that theory a lot over the years, as have my brothers in their own ways I'm sure but perhaps not as conspicuously as my own challenges. They've stood by that doctrine and always welcomed me. Even when they may not have been too excited about it, or been especially eager to see me go again. I was always welcome. Fortunately, I live 600 miles away from them so I don't show up on their doorstep all too frequently, but if I lived closer, I'm sure that would thrill them both. And that's the biggest lesson that I see played out in so many ways that I really want to instill in my own children.

That freedom, the knowledge that they would always be there to catch me if I fell, gave me more leeway to try new things, experience new ideas, embrace this life in a way that I never would have if I lived under threat of judgement or disappointment. While I'm sure they have judged, and I have disappointed, neither of my parents ever gave me one iota of anything other than complete acceptance and support. And knowing that I could make mistakes and they'd forgive me gave them the opportunity to make their own mistakes and expect forgiveness from me as well. Rightfully so. That's the backbone of our family. It doesn't matter what you do, you can always count on your family...often whether you like it or not.

So as I think about words of wisdom to pass on to some amazing parents-to-be, it's that. Intentionally build a family where love is given freely and unconditionally. Know your children may make different decisions than you and give them a floor to express themselves regardless of whether or not you agree with them. Practice forgiveness with them and they will practice forgiveness with you. Don't hold grudges, you are the only one that hurts. I love the phrase "Leap first and the net will follow." The roll of the children is to leap, and of catch them. Always. That's what my parents taught me, and what I hope to teach my own children someday.

Hug your kids/partner/pet/parents and make it a great day,


Tuesday, August 21, 2012

The ACA and you.

How has the Affordable Care Act impacted you? Details, please, the more the better. I had that conversation last week with a research team doing a study on this very thing. How does the implementation of the ACA impact families, does it? For the better? Why? 
That’s a trickier question then it seems. Of COURSE it impacts my family, but it's more of a big picture thing. The pre-existing condition clause is huge for us. The knowledge that Henry won't get denied coverage based on his health history, that even if we something happened to affect our employer sponsored health insurance, he would be ok. But is that enough? Is that a compelling story? That's the same story as every other kid with a pre-existing condition. What else is there about us...about how the ACA helps us?  

Well.... let me think. And that's where I landed. Thinking. See that's the thing, I accept my private health insurance, I pay the premiums and assume when they deny me coverage for something it's because it's not really that important, or a necessary part of my health care. But, and you see where I'm going with this, what gives them the right, my INSURER the right to determine what is a necessary part of our health care?  In particular, Henry has been repeatedly denied coverage for Physical Therapy and Occupational Therapy because they are "developmental" and not related to a particular injury. "Good news" I said when I met with their appeals board, he did have an injury, he had a stroke. Because his stroke was in utero, it's considered congenital, so any therapy related to that injury would be "developmental".  Ah.  Clear as mud.  "But our Primary Care doctor prescribes us to see a PT and OT, and the CP clinic and Gait clinics we attend are all covered by insurance, just not the actual therapist visits?" Yep. Denial of appeal letter appeared in my mailbox the next day, though they still did accept the premium payment in my next paycheck. 

And this is where the ACA could really change things. Right now, states are deciding what their minimum level of coverage will be when the ACA kicks in. They’ll determine coverage for many areas of treatment, from preventative to palliative, but what matters to us, each state will set their own definitions for the minimum coverage requirements for rehabilitative services like OT and PT and whether they’ll be required to cover developmental services. It’s the state legislators that will actually decide, on a state by state basis, what the ACA will mean for their state. And this is where you can make a difference. As this process goes forward, there will be countless meetings held, presumably behind closed doors, where this coverage is hammered out, and that's when it will be critical that your legislators understand what your needs are and why.  The implementation of the ACA could force my private insurer to start covering what my doctor tells them is a necessary part of Henry's healthcare. Finally. 

And that's the thing with the ACA. It's so big, and so much of it is getting rolled out a section at a time, and then some of it is getting implemented by the states and some by the federal government and there's a whole lot of misinformation getting thrown around. So people take the nugget that pertains to them, cling to it, and either love or hate the ACA because of that nugget. And I'm no different, I preach the benefits of the pre-existing condition clause to anyone who stops long enough to listen. But because I'm so focused on that nugget, I don't see the rest of the treasure. Elimination of annual and lifetime coverage limits of benefits (critical to a person with a lifetime of medical needs before them). Young adults having the option to stay on their parents health insurance until they are 25 (more than 25% of working age persons with disabilities are living in poverty). Health insurance companies that are required to spend your premium dollars on healthcare and not on their profit margin (um... yeah, I'm pretty sure our family isn't good for anyone's profit margin). I recognize that some politicians claim Obamacare is the first step to socialized medicine, that a for-profit insurance business is the only way to keep costs competitive and that just doesn't make sense to me. That clearly didn't work. So why keep doing the same thing? 

I'm excited to learn more about what the ACA can do for our family, and more importantly, how I can help impact that on a state level through advocacy and education. I look forward to that journey, and to sharing it with you every step of the way.  

Hug your kids/partner/pet and have a great night, 


Thursday, August 9, 2012

The asterisk

I have this thing. The unspoken asterisk that I often add to people's commentary. The things I think they are saying in their head but would never utter outloud because they don't want to hurt my feelings.

"Wow, you ran a half-marathon? Congratulations that's quite an accomplishment." (*: for a chunky monkey like yourself)

"Knitting? Yoga? Running? Dance class? Where do you find the time?" (*:clearly at the expense of quality time with your family)

"How in the world did you end up at APT?" (*:clearly they could have hired someone vastly more educated and well suited than you)

And that's the thing. That asterisk just lives in my head. I don't actually believe it. And I've gotten MUCH better at ignoring it or even eliminating it in some cases (in my career, for example, I'm confident and good at my job), but at some level it's always there. But it's always just been about me. It's my short-comings, I absolutely don't add the asterisk to others, it's just been about me.

Monday we had a doctor's appointment where that damn asterisk was applied to my son. MY SON. He aged out of birth to three in February where he was getting PT and OT weekly. At that time, he enrolled in the Early Childhood program at Spring Green Elementary and was evaluated as not qualifying for PT but he received OT twice a week. But school, and therapy, ended in May. About 10 weeks ago. Now, let's be clear. Aaron and I do regular therapy with Henry. We use his constraint cast and he gets ipad time, we stretch regularly, work on his core strength and balance and he's constantly active. Pedalling his bicycle with two feet, pushing his favorite shopping cart with two hands, working on building those neural connections through countless everyday activities. What we don't do is have a regular weekly session with a PT or OT. And why don't we do that you may be asking yourself? Clearly that's something we should be doing. Our insurance provider disagrees with that though, and deems PT and OT as "Developmental" therapy which isn't covered by our policy. They do cover PT or OT related to an injury, but since Henry's stroke was in-utero, it's considered congenital and not an actual "injury" that they can treat. So we haven't had therapy for the summer, like countless other families who rely on the school district for their services, we do what we can, and hope we don't regress too much over the summer.

Monday's evaluation had our (very competent) doctor (whom we love) tell me that "All things considered, he's not doing too bad. I mean, you haven't been in therapy, and the purpose of the evaluation is to see how he's progressed from therapy, so we can't expect to have a great evaluation. You're doing the best you can though, considering." 

I beg to differ, madam. Henry is not only doing "not too bad", he's freaking amazing. He's running and jumping and skipping and dancing and giving high fives and swimming on his own. He's bossing us all around with his mad verbal skills, and sleeping in his own bed and thinking about pooping on the potty and is laying the groundwork to someday rule the world. That's how Henry is doing. There's no asterisk anywhere near him, so take it out of your medical write up. We're not just doing "the best we can with what we have", we're doing a damn good job of raising two amazing little people. So get that asterisk away from my son.

In her defense, she was talking out loud to try and figure out how to write an order for OT and PT that insurance would cover. Ultimately she went with a "Pre-Botox evaluation and treatment" and "Post-Botox evaluation and treatment" order that should at least get us through the end of the year. But I left deflated, feeling like I had missed an opportunity and my son was paying the price. And I don't know how to change that. I don't know how to convey to insurance providers the value of Developmental therapy in a toddler's life. I appealed their denial of coverage and met with their board, shared my story, gave it all I had really, and they still said no. I wonder if the ACA will change those requirements, if they'll be forced to cover these essential therapies. Medicaid covers them, but most private insurers don't. And if Henry were on Medicaid, his therapy through the Birth to Three program would have been covered. (Note: In spite of not being covered by our insurance provider we still received services, the county paid for them though because our household income was too low for a cost-share--that's only available as an option until the child turns 3). I'm eager to see the ACA implemented fully, and have private insurers meet the same standards of coverage that Medicaid has provided for decades.

Until then, I'll continue to battle that damn asterisk. To work constantly to get Henry to be competitive with his typically developing peers, to make progress, to communicate effectively his heart's desires, to poop on the potty. And when the day comes when insurance providers actually cover the therapies we need, well, we'll just have more people on our team to help with this journey. 

Hug your kids/partner/pets, and kiss the asterisk goodbye.


Thursday, August 2, 2012

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...


Thursday, June 28, 2012

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... is where you can contribute to President Obama's re-election campaign, should you be so inclined. 


Saturday, April 21, 2012

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. 

Friday, March 30, 2012

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.
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!