Bring it.

My son, the athlete. That's the largest takeaway piece from three hours of back to back appointments with various specialists last Friday. His affected hand bends in an unnatural way because of the spasticity of his muscle, the pinky side is so tight that it has pulled the entire wrist at at an angle. He has a brace that *may* help (they aren't really sure) but he won't wear it because with it, he can't throw a ball or hold onto his bike. And the neoprene material doesn't breathe, so it's hot.

His gait is worsening, as is evidenced by the constantly scraped knees. They want to refit him with an AFO, a brace that spans the length of his right calf, and continue with a new orthotic for his left foot as well. The braces he has now are made of a rigid plastic that prevent him from running or riding his bike, and aren't the most ideal summer footwear.

So here we are. We're working with our orthoticist who has been testing a new brace designed for athletes. It's smaller, more light weight, and should still provide the support that will help Henry support himself when he tires. And, more importantly, it will allow him to move the way four year old boys need to move. We have a referral to meet with a hand specialist, to assess Henry's ulnar deviation (fancy language for super-stubborn pinky finger muscle). They will fit him with a hand brace designed to prevent him from pulling his wrist, with the goal of treating him as an athlete. Whatever splint or brace we end up with will be designed to throw a ball, grip a bicycle, all in the heat of summer.

He's an athlete, and his doctors are treating him as such. I'm still wrapping my head around that one.

The developmental piece is trickier. His teacher talks about not being able to identify numbers or letters the way a typical four year old can, and the disconnect between shapes and language she's noticed in countless different scenarios. After speaking at length with our physiatrist, she is convinced that it's not a global delay, but instead a form of aphasia common in kids with cerebral palsy. He sees the square, knows it's a square, but can't get his brain to say the word "square". He excels at sequencing images in a story, but when it comes to describing the images he's silent. He knows the answer but can't find the words.

Our next specialist visit is with a neuropsychologist who'll study the way Henry learns concepts, and then how he expresses his knowledge. Everyone seems to think that intensive speech therapy that focuses not on pronunciation of words but on general language concepts is the place to start. We have four appointments already set up for the summer.

So that's where we are now. Four speech appointments, a neuropsych eval, a hand specialist, and an orthotics appointment (and follow ups). All to take place sometime between now and September 1, which also means it's the same time as opening seven shows at the theatre, hosting six appreciation events and two open houses, two concerts in the park for the local library and balancing summer baseball and violin lessons for Charlotte while training for a half marathon.

Bring it.

Hug your kids/partner/pet and don't forget to breathe,

b

So much to learn.

Four. My baby boy is four.

Some people speak romantically about the moment their life changed forever… the day they met their spouse, landed their dream job, won the lottery. I still remember the day Aaron came into my life like it was yesterday, and stand in amazement that I truly have my dream job, and have repeatedly won the lottery (sadly never more than $5), but the moment that my life changed forever… the moment that changed me forever, was February 10, 2009. The day Henry was born.

Four years ago.

The day they said he’d lost 85% of his left brain to a blood clot that traveled through the umbilical cord and into his brain, then split in two sending clots down the Middle Cerebral and Anterior arteries of his left hemisphere. They used words like “catastrophic” and “massive” and the notes I took from that first encounter have my exhausted handwriting of words to look up. Ischemic, hemiplegia, then at the bottom… prognosis unknown. And that sucked. Truly. But that didn’t change me, because that’s not the end of the story.

The story continued with our friends and family rallying around us. A steady stream of support that started that day and has carried us through the past four years, and continues everyday in countless ways. That’s what has changed me. It’s impossible to put into words how humbling it is to be the cause. The family for whom people are praying and making lasagna and delivering care packages. Because they care. About us. In a way I couldn’t have imagined. It’s incredibly humbling, there’s no better way to say it, but in addition to that, it fundamentally changes a person to accept that much help from everyone. It absolutely changed everything that mattered in my life, and it continues to shape our lives to this day.

That’s not to say that I was “wrong” before and now I’m “right”, or that there’s a good and bad in this scenario, just that things are different now. I know how much this community has been there for us, and knowing that, I behave differently in this community that has given so generously. I volunteer at the library, sitting on the Friends board and creating and managing an inclusive summer art series for kids of all abilities. I shop locally, and support Nina’s, Arcadia, Ederer’s and Phil’s with what dollars we have. I always show up to waitress at the fish fry, even when it’s not where I’d prefer to be. I know my elected officials and email them regularly, from state officials right down to the village board. I pay close attention to legislation that impacts education and special needs kids because I know how it affects us in our real world. I’m engaged in a way I simply wasn’t before Henry was born.

Beyond the community, I see my family in a different way than I did four years ago. Four years ago when they came to sit with us, to wait with us, to ask questions and take notes with us. To listen and cry and hope and wish and pray and rally. That hasn’t lessened a bit in the past four years. As Henry has grown and his medical needs are more clear and there are more answers and fewer what if’s, I know that he is loved by so many, that his journey is followed by those who wrote him notes and sang him songs, and keep writing and keep singing and keep asking questions as we continue this adventure. I ask for help. I accept help. I am grateful.

Hawk and Henry, the best of buds

Henry is amazing. He’s just perfect, opinionated, stubborn, demanding, particular… everything a four year old should be. And I am thankful. I’m thankful for the lessons that Henry has taught me about how to accept love and support, to live in the today and not worry about the someday, to be a good neighbor, to be a good friend. There is still much work to be done in all of these areas, absolutely, but Henry’s only four.

His lessons have just begun.

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 parents...to 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,

b

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, 

Beth

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.

b

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