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

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