Saturday, May 8, 2010

Can We All Just Calm Down?

As you've no doubt heard, five high school students in California were asked to turn their shirts inside out or go home because they bore the American flag on Cinco de Mayo. Obviously, the decision made by the Administration was wrong, and in violation of the students' constitutional rights to free speech.  I don't think I've heard any disagreement on that point. The decision was reversed and the Principal of the school issued a public apology.  That should be the end of he story.  Sadly, it isn't.

Despite the apology, the mother of one of the boys contacted Fox News (of course) and a media maelstrom was born.  The teachers at the school started getting hate emails, the local Tea Party group has called for a rally in the town, and there is even a facebook poll asking if the Principal should be fired.  (95% have answered yes).  Fired.  For one bad decision.  I hope all the people who are calling for the firing are judged as harshly at their jobs.  Imagine knowing that a single error in judgment could send you to the unemployment line?  

The reaction is so wholly disproportionate to the offense, it's disturbing.  Why are people so easily angered?  Why do they use the slightest infraction to justify that anger?  

Yes, the Administration of the school made a bad decision, but let's not operate under the delusion that those five boys were somehow innocent victims.  These are kids on the verge of adulthood.  They are aware of the world around them, they know what's going on and they were perfectly aware of the political climate and heightened anxiety in this country over the issue of immigration.  They made the decision to wear those shirts on that particular day not out of some deep sense of patriotism, but to be provocative.  (Set aside for now the fact that patriotism has nothing at all to do with what you wear, put on your bumper, or post as your facebook status.) They did it to cause a stir and garner attention.  They got exactly what they wanted and now people are unjustifiably angry.  If they thought their actions would somehow help the public discourse in this country, they miscalculated.

 What is so rally worthy?  Were all the teachers asked to take down the American flag in their classrooms?  Was the Pledge of Allegiance suddenly banned?  No.  In a misguided attempt at being sensitive, and proactively avoiding conflict, a bad decision was made.  That's it. One bad decision, with good intentions.  A decision which was consequently reversed and for which an apology was issued. That isn't good enough for the "I'm more patriotic than you" crowd, and now their self-righteous anger has led to hate mail being sent to good, honest, hard working teachers, who in all likelihood have a better grasp of what it means to be patriotic than the people propagating anger and hate in the name of patriotism.

I find hope in the students. In the wake of this nonsense, they gathered together to hold an impromptu peace rally on their campus.   They had a moment of silence for the teachers receiving hate mail,  and they raised the American and the Mexican flag together in a show of solidarity and mutual respect. The next day, many of the students wore plain white shirts to school to promote peace and calm tensions.

I wonder if the rest of the country will take a moment to learn a lesson from these kids and all just calm down.


Wednesday, May 5, 2010

Out of the Darkness

I've wanted to post about this for several days, but was so emotionally drained from it all, I couldn't even get started.  Now that I am finally sitting down to get it all out, I only hope I can do with the respect and eloquence it deserves.

Last weekend was a strange juxtaposition of emotions and events.  It began Friday afternoon, when I donned my pink "Bosom Buddies" T-shirt and headed out to spend the night with my fellow "Bosom Buddies" at the Relay for Life.  For those unfamiliar with it, the Relay for Life is a fundraising event put on by the American Cancer Society.  Each team commits to having someone walking for 24 hours.  We work in shifts, usually two at a time, but often more, walking for an hour.  We have tents set up behind our booth where we do fundraising in a variety of ways.  I learned about this team through a teacher I substitute for, who happens to be a breast cancer survivor, hence the team name.

We began our event with opening ceremonies, including survivors who shared their stories, which had us all thinking "Damn, I forgot to bring my kleenex" as we wiped away our tears.  Then the walk began at 6pm, with the first lap being walked  by the survivors while we handed them flowers and blew bubbles.   It is both encouraging and humbling to see so many people who have fought, and won, this battle and very unnerving to see how many of those survivors were young people.  It was a wonderful start to a truly amazing night.  We stayed up talking, laughing, playing games and taking turns walking.  Eventually, we even managed to sneak in some sleep.

I had planned to stay for the full 24 hours, but life had other plans, so Saturday morning I got up and left my team to go to a Memorial service for a wonderful man. This man had been a part of my life since I was a child.  He was my youth pastor growing up and head pastor of the church we attended when the kids were small.  He officiated our marriage, baptized all my children, spent time at my house when he came over and brought his trains to have a playdate with my son.  He was also my dad's best friend, and he and my dad would take my son to multiple airshows every year.  He was in every way a part of our family.  The service was beautiful and emotional.  More people showed up than the church could hold (over 700 people!) and everyone had a story to share about how this man touched them.

If I told you that my pastor died after a very long battle with illness, what would you think?  You might assume cancer because it is so ubiquitous a disease.  I'd bet you might also think he must have been a brave and strong man to have fought his disease for so long.  But cancer is not what took our pastor away from us.  Instead, he lost a battle with depression.  It's very hard to reconcile the man we all know with the act that took his life. Knowing that he took his own life, do you still think him brave and strong? Until that day, I was like everyone else who thought "People who commit suicide are selfish - too selfish to care how they are going to hurt others."  Isn't that what most of us think?  Maybe that's true for some people.  But not my pastor.  There was not a selfish cell in his body.  He spent his life caring for others, nurturing others, healing others.  Even just days before he left us, he was tending to others, calling my dad and checking to see how he was handling an early retirement that was forced upon him by a plant closure.  He was ALWAYS taking care of people, and guiding them to God.

So, I naturally spent the first several days after his death feeling just . . . lost.  I was raised to believe that God is bigger than all our troubles; a belief, a FAITH, that was guided and nurtured by my pastor, and throughout my life that has always been true.    Then WHY wasn't God bigger than my pastor's troubles?  How could the man who helped guide my faith not be saved from the pain of depression by his own faith? 

I spent the entire week after his death barely able to sleep because I could not turn off my mind.  Then I went to the Relay for Life, and I listened to all of these wonderful, inspiring stories.  Every survivor had a unique tale to tell, but they all had one very important common denominator.  They had support.  They had people - friends and family - who stood by them and took care of them and their children.  Their support team read with them and stayed with them during treatment and made them laugh, and cried with them when they cried.  As I listened to all of these wonderful beautiful stories of love, I looked around a saw a thousand people all gathered together, giving up a day to walk in support of those they love, and in support of people they will never know.  It made me very very sad, because it answered all the questions I had been struggling with the week prior.


How many of you have participated in an event to raise awareness and support for some disease?  I have walked for cancer, for MS, for Down Syndrome. There are events for AIDS and autism, leukemia, breast cancer, premature babies . . . but there is nothing for depression.  No walks to raise awareness, no rallies to show support, no fundraisers to fund research . . . nothing.  That needs to change.  We need to stop looking at depression as a mere emotion and acknowledge it for what it is:  a disease.  We need to stop judging people who suffer from depression as weak, and support them for who they are: brave, scared people fighting a disease.

I will never again assume that anyone who has taken their own life has done so out of selfishness or weakness.  My pastor was neither of those things.  My pastor was strong and he was brave.  He was brave enough to care for others while he suffered in silence.  I hope anyone who comes across this will do the same.  We need to bring depression out of the shadows and into the light.  We need to acknowledge it, and dignify those who suffer from it by giving it the same deference and attention as other illnesses.  Depression is real, depression hurts and depression kills.  Let's shine the light on it, and maybe, if we do it together, we can save lives.

Sunday, February 7, 2010

Saturday, February 6, 2010

What a Week

When I woke up this morning, I was feeling really . . . off. My throat was scratchy, which is no big deal, but I had no energy. I felt like I hadn't slept all week. Robert is such a saint, he let me take a nap all afternoon, and while I am no longer tired enough to sleep, I still feel really drained. Honestly, I think if I had a good cry, some of my energy might be restored, but I was sitting here trying to figure out WHY I feel so rotten, and it occurs to me this week was probably one of the most emotionally draining weeks I've had since Gabe's last serious illness. The obvious event was the surgery of my friend's son, Teddy - the one for whom I dyed my hair blue. The surgery was on Wednesday, and I spent the day at the hospital with my friend's family until he was in recovery and they could go be with him. It was a pretty tense day, waiting while an eight year old boy we all loved had his brain exposed so the surgeon could remove a tumor that we smack in the center. At the end of the day though, Teddy proved what an amazing kid he is, and he proved the power of prayer a hundred fold. The surgery went smoothly, they were able to remove the entire tumor and it looks to be benign. That night I really felt like crying, but never did, so I guess I've been carrying that around all week.

What Teddy' surgery did for me, however, was re-align my perspective a bit. I like to think that the experiences we've had on this parenting journey with kids who aren't typical has given us a pretty decent perspective on life - an appreciation for the important things, the ability to recognize the big stuff from the little stuff, and that 99% of it is little stuff.

But sometimes I lose my way, and get off track. I've been wasting a lot of time lately worrying about the fact that my house is always disorganized, and that I can't keep up with anything, and I've been spinning my wheels trying to fix that instead of spending more quality time with the kids. At the same time, the fact that all three of our kids can now be described as "not typical" has come into sharp relief.

For Nick, those little quirks and idiosyncrasies of Aspergers seem to have graduated from minor annoyances to hindrances and problems. I think we are at the beginning of what is going to be a far more challenging period for Nick, and I have to say, I'm not sure I'm up to the task. I am truly feeling wholly inadequate to guide him through what's coming, and I'm desperately afraid he won't make it through without some collateral damage. It doesn't help that I feel like I'm flying blind. Aspergers is such a great unknown to me, and it is such a wide net, that I don't even know which way to go. I think we are lucky that Nick seems to be one of the milder cases - he's been able to function in school and do well, even if he hasn't been able to make friends. But right now, that doesn't make it any easier. In many ways, dealing with Down Syndrome is sooo much easier. I have a whole support group, and there is so much more concrete information about DS. There is at least a kind of road map we can follow. With Aspergers, I feel like I'm in the middle of nowhere without a GPS to guide me.

Also this week, we finally had the speech eval on Elijah. It went exactly as I expected. For a four year old, he doesn't have the articulation he should, and his deficits are enough to qualify him for speech services through the school. It's not news to us. We expected this outcome, and honestly, it really isn't worrisome to me. Speech articulation is a whole lot easier to deal with than either Aspergers or Down Syndrome. Even with his deficits, Elijah already speaks much better than Gabe, so it's really small potatoes, in the grand scheme of things.

But then it hits me, the very real possibility of having three kids all with IEPs. I'm an old pro at it, but still. Three kids on IEPs. I hate having to deal with just one. The thought of three is overwhelming to me right now. I know, on an intellectual level, this is nothing. My kids need some support and I *know* how to get it for them, and how to work with them. This week, my friend had to deal with the terror of having a child with a brain tumor. I can't even imagine what this week has been like for her, and I feel a bit guilty that I am even the slightest bit upset over my kids - my funny, energetic, loving, HEALTHY kids. Teddy is helping me keep it in perspective. We are all healthy and together and that's the only thing that matters. All that other stuff is small potatoes. It's just that sometimes, too many small potatoes make me feel like . . . how I'm feeling today.

At Least She Is Predictable

Following my previous post (which apparently reveals me to be an angry bitter person. That should come as a shock to my friends.) Sarah Palin did me the favor of proving me right. Her outrage over the use of the R-word, as it turns out, is nothing more than a political tool.

Before I explain further, I do wish to retract something I said. I said I think Rahm Emanuel should be fired. I take that back. Rahm Emanual, whatever other flaws he may have, handled the criticism like a grown up. He apologize and he signed a pledge to eradicate that word from his vocabulary. I appreciate that.

As it turns out, other far more vocal people have thrown the R-word out there, most recently Rush Limbaugh, and Sarah Palin didn't have much to say about that. Everyone's favorite psycho talk show host, Glenn Beck has used the term repeatedly on air, and Sarah Palin has remained silent. When confronted with Rush's transgression, Sarah's spokesperson issued a watered down generic statement about how it's not nice for anyone to call names, and then she later walked it back by clarifying that she was not talking about Rush in particular.

So, let's review. A democratic member of the President's staff issues the word in a closed door meeting amongst a small group of people, and Sarah Palin composes a lengthy diatribe on her facebook page about his lack of decency and demanding that the President fire him. Rush Limbaugh and Glenn Beck repeatedly use the term on public airwaves where they are heard by huge numbers of people, and that gets . . . nothing. The Democrat apologized and signed a pledge. Sarah thinks he should be fired. The Republicans have offered no sign of concern or recompense. Sarah remains silent.

Sarah Palin is as transparent as she is shallow. She has no convictions. She can't be bothered to defend her son, unless it is politically advantagous for her to do so. She truly is shameless. Trig deserves better and so does our country.

Wednesday, February 3, 2010

Sarah Palin Sure Loves to Talk

Her latest diatribe is against Rahm Emanuel, for his ignorant use of the R-word. Let's be clear, Rahm Emanuel is an ass. I hope he gets fired. He deserves every ounce of criticism he gets.

But not from Sarah Palin. Sarah Palin is the biggest of hypocrites, and her feigned outrage is completely hollow. She will jump on the bandwagon to criticize someone for the use of a word, and she'll trot her poor son Trig out, when it suits her, to promote her own self. But what, exactly has she done for the DS community, other than give birth to another member? Nothing.

Has she sponsored or fought for any legislation? No. Although, I guess that's hard to do when you quit your job halfway through. Has she fought to increase funding for research or programs? No. Has she participated in any of the nationwide Buddy Walks to raise awareness? No. Has she come to any conferences and given a speech? No. I was at the last NDSC Conference, and she was nowhere to be seen. One would think, given her state of voluntary unemployment, she might have the time to squeeze in an appearance or two to help promote awareness, research and programs. She seems to have enough time to speak to foreign audiences about what she perceives as failures in this President, and she seems to have enough time to speak at "Tea Parties." She has enough time to pontificate on the evils of providing healthcare to everyone, conveniently using Trig as a tool to manipulate opinion. Heck, she's been able to squeeze in writing a book (I use the term "writing" loosely) and promote it at book signings all over the country.


Here's a novel idea Ms.Palin. You want those of us in the DS community to take you seriously, perhaps you should consider engaging, instead of using your son's diagnosis as a convenient prop in your endless quest of self-promotion. You're mighty good at talking the talk. Why don't you wipe off some of that lipstick and walk the walk. I, for one, am not holding my breath. Given that you willingly put his life at risk to go make a speech, I personally don't think you hold your son in as high regard as the rest of us. It's a damn shame, really. Trig has such great potential, if he only had a mother who was interested in being his advocate, even when it's not to her benefit.

Wednesday, January 20, 2010

Feeling Blue


Check it out - I've gone blue! Crazy, huh? No, it's not some mid-life trying-to-get-my-youth-back thing. OK, maybe - I would never have been allowed to have blue hair in my youth, and my mom's reaction when she saw this was soooo worth it! Sorry Mom!!

Seriously, this is for Teddy. Teddy is an 8 year old boy who is a classmate and teammate of my oldest son, and his mom has become my good friend. Teddy is one of the most genuinely sweet and innocent boys you'll ever know. Right now, Teddy is stuck in his house and he can't go to school and risk illness. Teddy has a brain tumor, in probably the worst possible place a brain tumor could be. In addition to the worry and anxiety he is feeling about just having to deal with this, we was worried about having to shave his head for the surgery. A group of his friends have promised to shave their heads with him to show him support. I wanted to do something too, but am not brave enough to go bald, so I asked Teddy what his favorite color was, and I dyed my hair in his honor. I promised him the blue hair will stay until he is fully recovered. The added bonus is that blue hair always elicits comments, which gives me the opportunity to share Teddy's story and grow his prayer army. If you are reading this, I hope you too, will join the growing legions praying for this boy, because he really is very special. If you happen to be on Facebook, you can also join a page called "Support for Teddy" and leave him messages, keep up with the latest updates, and get to know his family. And if you're feeling a little crazy, dye your hair blue!

Tuesday, January 19, 2010

An Open Letter to the Democratic Party

Dear Democratic Members of Congress -

I have never before felt so betrayed by my government. You, the elected members of the Democratic Party have completely betrayed me, my children, and every other voter who fought for your right to represent us in 2008. I have a child with a disability that no health insurance will touch. So we plan for his adult support knowing that if the system remains as is, he will be forced to live in poverty just to qualify for basic care. I had such high hopes that his future wouldn't have to be that way. I thought we finally had a government that really and truly cared about its people. I thought we finally had a government that wanted to do something about the 40,000 people who die every year needlessly because insurance companies won't cover them. It is so heartbreaking to realize I was wrong.

You have the majority. Tonight you have one seat less, but you still have the majority in both houses. Instead of assuring us that you will continue to work on reform, you back away from the fight? There is not one single reason beyond your own ineptitude that we shouldn't have reform by now. It was, and still is, what the American people want. It is why we elected you. So what have you done? You have allowed a minority party, whose stated purpose is to stop anything and everything you propose, to do just that. You have allowed a minority party, that spent the last eight years trashing this country, to bring the halls of Congress to a standstill. You have allowed a minority party that cares only about defeating the President who WE voted for, to stand in the way of any progress on an agenda that the majority of Americans support.

WHY? You do not have to allow this. You are the majority, and you still represent the majority of Americans who still want change. You have the power to set set the rules - and to change them when they are so badly abused. But you don't. WHY? Where is your courage? Where is your conviction? Where is your moral spine?

I truly fear for the future of our country. We have a two-party system, with one party who doesn't want to govern, and one who can't govern. Where does that leave the rest of us?

You have ten months to prove to us that you are not the gutless, spineless whelps we see today. You have ten months to DO what we want you to do. Are you going to stand up, or are you going to lay down? How I hope and pray you stand, but if the last several months are any indication, I fear it won't be the case. I can't tell you how sad that makes me, especially when I look into the eyes of my sweet boy.

Monday, January 11, 2010

The Sistine Chapel Wasn't Painted in a Day.

Democrats need to get off their asses, and I don't mean Congress. I'm talking to you, Voting Public. The ease with which so many have fallen into complacency is disconcerting, to say the least. This election year is important. Dare I say, more important than the last. Last year we overwhelmingly voted in a new administration with high hopes and unrealistic expectations. Since the change we voted for hasn't been delivered in a nice, complete package, people are discouraged and becoming disengaged. This is a mistake.

The frustrations are justified. We have yet to see what we envisioned when we voted 14 moths ago come to fruition. Which is why it is more important than ever to stay engaged, to keep ourselves in the dialogue and to continue to vote! The euphemism I have most commonly heard is that this is a marathon and not a sprint. We need to keep up the drive and the energy, and I agree. But I tend to think of it another way - I think of the Sistine Chapel, arguably one of Michelangelo's greatest works. Imagine if Pope Julius II had decided after one year, that progress was too slow and unsatisfactory. What if he had decided he wasn't seeing what he wanted to see, and cancelled the project, or brought in someone else.

The painting of the Sistine Chapel ceiling was a daunting task, and it took Michelangelo four years to complete. Rather than painting a single canvas or wall, Michelangelo had to plan for an area 133 feet long and 50 feet wide, which was 65 feet off the ground, and curved. Before he could even begin he had to plan not just what he would paint, but how he would paint. A full scale scaffold built from the floor up wasn't possible because the Pope wanted to be able to continue to use the chapel for services, so Michelangelo had to design a scaffold that was supported from the walls near the ceiling. When he finally got to the actual painting of the fresco, he had to stand with his head tilted fully back day in and day out. It was a long and arduous process, but in the end, what he accomplished is one of the world's greatest artistic achievements.

The process of making the changes we want is much like the process that led to the masterpiece that is the Sistine Chapel ceiling. Right now, we are still building the scaffolding, and we will never see the paint on the wall unless we enforce that scaffolding and support the painters. We began to put that scaffolding into place by electing a new President and a majority in both houses. Unfortunately, we have seen that scaffolding weakened by a minority that has lost all sense of moral objective. Rather than negotiate and compromise, they have decided to alter the function of the government so that a simple majority is no longer sufficient for governance. They have stymied, objected, obstructed, and abused the procedures and protocols to shut down any and all progress. They have made it necessary to have a super majority in order to get anything done. This is NOT how our forefathers designed our government to function.

So what do we do? We put a super majority in place. If we can build a stronger scaffolding in 2010, then 2011 we will finally see the paint applied to the walls, and real change can start to happen. That can only happen if we stay focused and engaged. Do not allow the frustrations of this year discourage you - let them motivate you. Show up, make your voice heard, keep pushing for change - and demand it with your vote. The Sistine Chapel wasn't painted in a day, or even a year, but what it became after years of hard work, has stood for centuries. We can make change that will withstand the test of time, too, but we have to do it one paint stroke at a time.

Monday, January 4, 2010

True Christians Should Fight FOR Health Care For All

I've opined previously that health care is a Christian value, that Jesus exhorted us to care for each other, and we should support policies that espouse that value. Real health care reform epitomizes the very core of Christ's teachings: "Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me." I have asked fellow Christians why they would fight against this reform and none of what they have offered as reasons can be reconciled to that which Christ has taught us.

I have been told Christ wants us to act as individuals, and not have the government "force it" upon us. Where in the bible does Christ say that "Do unto others, but don't ask the same from your government?" If we care about acting upon Christ's teachings, why would we not support policies that do the same? Why would we support policies that oppose helping the least among us? How does one reconcile wanting to help others on an individual level, but support policies that undermine that effort? Beyond that, is it realistic to expect that individual Christians can provide health care? Can we as individuals provide access to MRIs, or chemotherapy, or surgery, for those who need it and don't otherwise have access? WE CAN'T. This is a need that is far greater than what individuals can provide, which is why we, as individuals, are failing miserably. Tens of thousands of people die every year, because we cannot fill this need. So we should support policies that will fulfill this need, and we should not give in to the fear and falsehoods that are being argued against it.

Another argument I have heard, along the same vein, is that people shouldn't have their hard earned money taken from them to support people who . . . and you can fill in the rest of that with all manner of judgment; who chose to go without insurance; who are going to use that care to seek abortion (a whole other conversation in and of itself), who are sick because they are drug addicts or alcoholics . . . the list is endless. To those who make these arguments, I have one simple question. What would have become of us if Jesus had approached caring for others with the same level of judgment and condemnation? What if Jesus had said "You know, Heavenly Father, I don't want to spill my blood for people who are so sinful and unrighteous and just plain undeserving." Where would we be if Jesus had decided we just don't deserve his mercy and sacrifice? Christ gave it all away for free. He asked for nothing in return. Not a commitment of faith, not a promise of piety. He gave his life without judgment. If we are to be TRUE followers of Christ, then we should strive to do the same. Christ didn't beseech us to provide for only those we deem worthy.

Returning to the abortion excuse - there are a number of tangents to be addressed. Believe me when I say I understand the position that says,"I don't want my money used to fund something that my faith tells me is wrong." I get it, because we are now in year eight of a war about which I feel exactly the same. My money has been spent waging an illegal and unjustified war that has resulted in thousands of innocents dying. My money has been spent torturing people, many of whom are innocent. This is the nature of democracy. We all will have our tax money support things to which we are morally opposed. It is the giant grain of salt we all must swallow if we want to live in a country that respects all views and beliefs. Beyond that simple truth, however, is a far more complex and grey issue that is being used as a weapon to deny people the most basic of care. Using abortion as an argument against health care is to willingly sacrifice the lives of husbands, wives, fathers and mothers. The vast majority of the uninsured, the people who would be covered by tax dollars, are not going to be getting abortions. They are going to be getting well checks and preventative care and, when necessary, treatment for serious illness. Are you willing to say to these people,"Sorry, but I don't want to provide for your healthcare because a small minority of you *might* seek an abortion"? Trade places for a moment and ask, are you willing to sacrifice your own life, or your child's life to prevent someone else from seeking an abortion? Abortion is not a clear black and white issue, because even a majority of "pro-life" proponents can say "I oppose abortion EXCEPT IN CASES OF . . . " Where there is exception is where the issue becomes grey. Abortion is an issue that is complicated and is completely separate from the black and white issue of whether everyone deserves access to health care. It is wrong to use the former as an excuse to prevent the latter. Which brings me back to the basic point. Christ wanted us to care for each other, to tend to each other, to feed the hungry, house the homeless, to tend to the sick WITHOUT EXCEPTION, WITHOUT JUDGMENT. True followers of Christ should support the policies that champion that basic tenet. Health care for all does just that and Christians should be fighting for its passage, not against it.