War is Hell

I live in Linty Belly Button, the original home of the American Patriot. They love war and the American soldier almost as much as they love Baby Jesus, college football and large chunks of meat. What they really hate are bleeding-heart liberal feminists who think that the wars in Iraq and Afghanistan aren't the best usage of lives and tax dollars. I get a lot of the 'if you don't stand behind our soldiers, you're welcome to stand in front of them' kind of rhetoric, and I'm sure if they listened to me for a minute instead of stamping a label on me they might not hate me so much. Or maybe they would. I'm the wife and daughter of veterans and I have had a first-hand view of exactly how hellish war is on our soldiers. I also happen to believe that the very best way to support our troops is to have them safe and home. To protect them from PTSD, cancer, Gulf War Illness, missing limbs and suicide. To assure their families back home have adequate housing, medical care and support, and while we're at it that they don't have to live in fear either for their own lives or their husband's as the result of the PTSD, depression and stress of living through war. I'm not quite sure how that makes me unpatriotic or not supporting 'our' soldiers. I'm undoubtedly biased but I think it's much better than watching Fox News, waving flags, tying yellow ribbons, yelling "yay troops" and repeatedly playing 'Proud to be an American', which is, as far as I can see, how the average 'troop-supporting patriot' shows their patriotism and encourages the troops.

Right now, the American military system is broken. Congressmen are raking in six-figure salaries while the average service-member or veteran is living below poverty level. If s/he has a family, they likely qualify for WIC and food stamps, and often have to choose whether they can afford the medical co-pay for a spouse or child to receive needed care. Veterans and their families are going without needed medical equipment, prescriptions and care because of the limitations of the VA system and lack of money. Base housing is often unsafe and limited but at least the monthly bills are lower than living off-base. For disabled veterans, getting adaptations to their homes or cars is near impossible as the VA system is swamped with claims and service organisations such as Disabled American Veterans and Veterans of Foreign Wars do very little to actually help veterans receive their earned benefits. Thankfully a military base is a self-contained community with shopping, medical and even fast food joints a mere brisk walk away. However, the commissary and BX system, which are supposed to provide on-site grocery and housing goods for military members and their families are filled with expensive, name-brand goods and the commissary has a surcharge that often makes shopping there impractical for the lower ranks and retirees. Most commissaries are filled with processed foods and very little to accommodate those wishing to eat organic whole foods, nor do many have selections for those suffering celiac, lactose intolerance or dietary allergies. This all comes from first-hand experience, I've lived this.

It's unfathomable for me to believe that it is being unpatriotic to want children to grow up physically and emotionally healthy, without having to know the heartbreak of losing a parent in war or to the effects of war. I also know this from first-hand experience. The fact is: children are the greatest losers whenever there is war. I grew up without my father. It is heartless to say he could have been replaced. It wasn't possible. My step-mother got on perfectly fine with her life after my father's death, within months she was dating again and not much after a year she moved in with another man. She didn't want to marry him, you see, because that would have meant she would no longer be eligible for my father's military benefits and she didn't want to lose that. Many widows and widowers choose this option to assure they don't lose the benefits, the children, meanwhile, have to live with the fact that their parent will never return. When the surviving parent lives with another partner, there often is not the same stability or love that the deceased parent provided. So it provides a safety net for the parent while it allows the child to slip through and suffer. The children truly are the biggest losers in this scenario.

When children orphaned by war reach 18, they no longer receive monetary compensation for their parent's death. If they are able to go to university, there are educational benefits that barely cover tuition at the community college level. The surviving spouse, however, continues to receive monthly income courtesy the goverment. The child no longer receives medical benefits under his parent's name, although the surviving spouse does. This apparently comes from the thought process that the child is now an adult and should be able to provide these things for himself, while the surviving spouse, whether s/he has chosen another partner, should still be provided for. I believe it is a sick, broken system that heaps even more dysfunction and misery on already suffering kids. Children whose parents serve in the military and who lose their parents in war certainly suffer financially. But they suffer so much more emotionally. There is no support from the military or government to make sure these children receive psychological help, to be there for father-daughter teas/dances, to give the bride away on her wedding day, to teach teen to drive. Kids are left to make do the best they can, often without the support even of their remaining parent or parent figure. These are deep wounds and they affect all of society.

My father taught me to speak French, Turkish, Japanese and a few words of German. He taught me to love ethnic foods. He taught me to open my heart to friends of every colour, race, religion and philosophy. He was not ashamed to have tea parties with me, to cheer at my ballet recitals or hug my teddy bear when it got a 'boo boo'. He wasn't ashamed to bring my brother and I along with him when he received a commendation for bravery in battle. He was the kind of guy who was so loved and respected by his co-workers that they built sand castles at the beach with my brother and treated me like a fairy princess. The kind of man that other soldiers wanted to serve with because (so they said) they knew they'd make it home alive if they were with him. Two fellows did indeed come home because my father was willing to risk his own life to save them from enemy fire. That is the person that my brother and I, and the world, lost because of war.

The man my step-mother lived with assumed no responsibility for my medical bills, he didn't set up a college trust for me, he didn't even give me an allowance. He showed no kindness to me, nor gave me support of any kind. He did not fill, in any way, a father role for me. He did not provide any help or guidance for my future. I have no father, he was taken from me. He was not, could not ever be replaced and I bear the scars to this day of the loss. Yes, I have achieved a life of my own, I have gone on to form a happy, loving family and I'm a 'functioning member of society'. But given the choice, I would rather have had my father, and for the other orphans of war to have their fathers too, than to have them wasted in a conflict that has no real bearing on the defence of the country. If that makes me unpatriotic, if that makes me a bleeding-heart liberal, if that makes me unsupportive to 'our' troops, I will accept that label any day over that of "patriot" and their superstitious sacrificing of soldiers to the Gods of War in hopes that we are all "safe" from some hypothetical evil.

Every Day's a Holiday...

For a billion different reasons, publicly recognized holidays aren't special days for me. When I was young, holidays were whenever my father was home. When my father died, holidays were endless tests of endurance with people who weren't related to me and acted it. When I was on my own, holidays were days of peace and quiet. And when I got married the cycle started from zero again as holidays were whenever my husband was home. As our children arrived and we embraced an unschooling lifestyle a truth my mind had been trying to grasp became obvious: every day is a holiday, every day is a special day. It took years for the idea to fully bloom...seeds were planted when my father died a few days before Thanksgiving, watered when I spent the summer holiday season frozen with the news that I had cancer and sprouted when my husband's car was hit by a city bus days before his spring birthday. My truth learned through those events was that special days may never come so we must cherish the days we do have.

Some of my friends feel sorry that our family don't celebrate specific holidays. It's not like we're party poopers or criticize their choice to celebrate, really it's no different than us not eating meat or practicing a different religion or unschooling. We just do things a little differently. They enjoy the routine and the traditions that come with marking special days. I'm happy for them but don't feel that we're missing out at all. And while we may not observe in the way others do, we do note days that are important to our ethnicity, home countries, countries we were raised in or socio-political causes. But do we only ever have pumpkin pie one day of the year? Get loads of presents on one or two officially sanctioned times? Eat a special cake on the day we entered the world? No, we don't do that. We eat cake when we want to eat cake, and if someone wants plum pudding, stuffing, cranberries, veg mince meat or sweet potato pie, we make it. I've never really liked the idea of giving presents on specific days- if there is something special I want to give a loved one it seems silly to wait for birthdays or christmas to give it, not to mention that there are so many issues surrounding wishing for gifts and building up hopes and encouraging materialism. Since I have lived in the United States, people think that it's a little kooky to be concerned with teaching materialism or consumerist attitudes to my kids - getting gifts is often treated as a right and parents who would prefer to raise their kids with the sense to decide for themselves what they want and if the item is worth it border on the cruel. There are more ways to cherish children than lavishing gifts upon them.

Last holiday season, one of the moms I follow on Twitter shared a story about making pumpkin pie with her daughter. The daughter wanted to eat the pie once it was cool and was sorely disappointed that the pie was to be eaten a few days later. While I appreciate the value of learning to wait for something, I kept thinking, 'it's just a pie, for crying out loud!' We get plenty of lessons on learning to wait for things we want, yet there are vitally important lessons we can teach by letting our kids have something they do want, too. Sharing a tiny slice of a freshly-baked pie with your daughter teaches her that she's important to you, and she gets to enjoy the results of her work. That can create a forever-memory for both mother and daughter to treasure. That's precisely why I make my family's favourite meals every day. It's why we get presents any time of year. It's why we balance fun things with the work. Because every day is special. Every day is precious. Because today may be the only day we all have together and it would be a pity to save up all the fun for birthdays, christmas or thanksgiving. Love is made to be shared every day of the year in the little ways and the big.

Living with Klippel-Trenaunay Syndrome: Skin

Since Meat was diagnosed with Klippel-Trenaunay Syndrome as an adult, he and I have done a lot of learning as we go. Since most of the doctors he encounters have no clue what the condition even is, let alone experience in treating it, we've had to research, ask questions and apply what we've learned. Sometimes we have to try different therapies before we find one that works for us. One thing we can say with certainty about our life with Klippel-Trenaunay Syndrome is that it is a condition that requires constant altering, adjusting, re-thinking and learning.

The most obvious 'symptom' of Meat's K-T is the birthmark. It covers his skin, to those who see him the first time, it is his skin. It's what draws the most stares, the most questions. Thankfully despite being the outermost part of him, most of the problems we've had with his skin have been manageable.

How Do You Keep It Safe From Harm?

The biggest challenge we have is keeping his skin safe from harm. The typical wounds we take for granted - paper cuts, scratches, kitchen injuries - all tend to cause Meat's vascular malformation to bleed profusely. This is quite different from the venous ruptures he's had from his varicose veins. It would be easier if we were talking about an isolated area but we're talking about his entire right arm down his chest, half his back around his side...and his buttock down his leg. Which leaves a lot of area to protect. Some memorable bleeding events have involved our son's dog jumping up on Meat, our cat barely scratching him and a scrape on our fence. The bleeding from his affected side is much worse than that of the other side. He has scraped both hands and not bled on his left hand while his right hand injury quickly pooled and dripped.

His compression garments help with some protection, covering his skin at all helps with some protection. This is much easier in the cooler months than during our hot summer. Sometimes his compression garments, cannot be worn since they aggravate his ulcers and dermatitis. So we haven't come up with a foolproof method to protect his skin.

Weather also affects his skin. Heat and cold impact him more than the rest of us, the vascular malformation being particularly touchy when the weather is too warm or too cold.


Dermatitis

Meat's skin itches. A lot. He also suffers from crawling sensations. Some of this is caused by neuropathy, but to him it is something he feels on his skin. Keeping him from aggravating dermatitis and/or causing wounds from a simple itch is a challenge. I've mentioned that we use coconut oil to keep his skin hydrated and that does help. We do have to be careful of what we put on his skin as products with excessive ingredients can irritate it. We've had success using some lotions from the health food store (Aubrey and Desert Essence are two good brands) and pure olive oil soap (which can also be found at health food stores or ethnic grocers for a little less money) helps to keep his skin clean without drying it out.

Ulcers and Aseptic Cellulitis

Ulcers and aseptic cellulitis have caused us the most frustration in dealing with doctors that have little experience treating Klippel-Trenaunay. Since most doctors are used to treating diabetes-related ulcers or septic cellulitis, not only do they not immediately consider it an option, but have often been incredibly degrading to Meat when he brings the subject up. This happens on a regular basis at the Oklahoma City Veterans Administration hospital where he is treated, and the frequent cycling of doctors does not help this.

Meat's ulcers have ranged from tiny to nickel-sized. When he begins to complain of the pain or notices one, we get him to rest with the leg up. The first doctor who diagnosed and treated one (an internist with an interest in vascular conditions) prescribed an Unnas Boot and rest. We've found out since that this is the generally the indicated treatment for these types of ulcers. Since we have moved into the OKC Veterans Hospital system, however, the doctors here are quick to ridicule and belittle him first and apologise later. When he has gone in for ulcers, he's been told there is nothing to worry about and that all he needs is a regular latex bandage. Even his vascular doctors are little help as none of them have experience treating Klippel-Trenaunay or conditions involving vascular malformations. Often we are left to do what we can and so we keep the ulcer bandaged and his limb elevated.

Aseptic cellulitis is an even stranger beast to get treatment for. We have been dealing with this particular problem for a little over two years. His first vascular doctor insisted he had bug bites and prescribed NSAIDS, which are contraindicated for him. After her repeated insistence that the spreading was still bug bites she referred him to dermatology, who also had no firm answers about what it was. Earlier this year he saw a doctor at the VA hospital's Acute Care clinic who laughed at him when he asked if it could be aseptic cellulitis as it has been reported in K-T patients. She told him that in 20 years of practicing medicine she had never seen it so while yes, it certainly hypothetically exists, she personally did not believe in it. It was hard not to laugh since this same doctor had an ash smudge on her forehead and was telling her colleagues that she needed to leave early for an Ash Wednesday service. I guess it's easier to believe in some things you've never seen than others.

With a rare condition, so much learning is really done as we go along. It's challenging to deal with doctors who believe they have all the answers yet have none for you. It can get disheartening. Support is very important, whether it's from family, friends or a support group. If you're a family member of a newly diagnosed K-T patient, I would encourage you to research as much as possible, ask your doctors and most of all, be understanding and kind. What may seem typical or average to you may not be for your loved one. If you have Klippel-Trenaunay, don't be afraid to speak up, don't be afraid of looking weak or not being the same as others. Be honest with how you feel.

The Saddest Time of Year

Today's World Humanitarian Day! Flooding in Pakistan, mudslides in China, wars in so many countries and so many suffering people. I applaud the humanitarian workers who are willing to sacrifice their comfort, shed tears and share themselves with those who need it so desperately.

While reading over the Humanitarian Principles a the WHD site, I was struck by two thoughts: Each one of us can function as a Humanitarian Actor in our daily lives. If we can change things in our own backyards, perhaps it could make a serious impact in the larger world. I'm very thankful that my daily trials where I currently live are not as severe as what many face. But as an unschooler, I find that most of the Humanitarian Principles could easily apply to parental life.

Humanity: Human suffering must be addressed wherever it is found. The purpose of humanitarian action is to protect life and health and ensure respect for human beings.

Neutrality: Humanitarian actors must not take sides in hostilities or engage in controversies of a political, racial, religious or ideological nature.

Impartiality: Humanitarian action must be carried out on the basis of need alone, giving priority to the most urgent cases of distress and making no distinctions on the basis of nationality, race, gender, religious belief, class or political opinion.

Operational Independence: Humanitarian action must be autonomous from the political, economic, military or other objectives that any actor may hold with regard to areas where humanitarian action is being implemented".

Maybe I'm particularly sensitive to this as World Humanitarian Day falls so close to Back To School Time and seeing so many kids lose their freedom is difficult for me. No, it's not on the same level as the Democratic Republic of Congo or Pakistan. But if we can give our kids their freedom, autonomy and souls back maybe we'll have more people to stop or help those who don't have the same opportunities we do.

Approval

First things first: you don't need the approval of others to be a great parent. You don't even need their encouragement, their tips/tricks/techniques or their "wisdom". I'm joyful when I hear of parents who have chosen to change destructive family habits in order to give their children a better life. I'm thrilled when I see parents completely changing their socialised thought patterns and conditioning to step outside of the accepted norm so their family can be free. It takes a lot of courage to do this and often it can mean ridicule or estrangement from family and friends. We definitely are the Local Freaks for thinking and living the way we do.

I'm pleased at the variety of encouragement available to parents seeking change. I've seen quite a few moms share that they've had their eyes opened thanks to a book, web site or documentary. And while I'm excited to see more and more parents looking at their kids as the humans they are and making radical changes, I'm also devastated by the same comments. Why? Because so many of us are so insecure and unsure of our own instincts that we need reassurance from people we often have never met nor are likely to. What those comments tell me is that the societal conditioning/public school mentality indoctrination is pervasive. "Don't do anything different from the crowd, even if your guts are crying out for something different." Why do we do it? To gain the approval of our peer group? Some people do it even for the approval of strangers. But here's the thing: we don't have to. The scary fact is that each of us is responsible for our own actions, our own lives. Despite the conditioning, abuse (or lack of), pressure and the millions of other factors that have led us to this point in time, the person who is choosing to move in your life is you. There are countless ways in which I could have emulated my father, step-mother, brother, various family, classmates, friends, teachers, neighbours...but I didn't pick up every one of their habits. Waking up to the concept that I had total choice over the world I created was empowering. It meant I didn't have to live by the template I was given nor by standards I had enforced upon me. I was free to choose. I was free to learn how to truly live.

What's more, each of us has a moral base - an idea of what is right and wrong in our personal universes. I'm not talking televangelist morality, but what you feel is right and wrong in your personal actions. So, even if you are currently living your life seeking approval from people, there is no guarantee that they will give it or even give it consistently, based on what they believe is right and wrong. What a waste to seek the approval of anyone else! Why not listen to your instincts instead, especially when it comes to being a mother or father? You have before you a tiny human, not a sub-human, not a less-than-human, but a teensy human life. Look at that little face and think of all the heartless people out there who won't care about her feelings. Think of all the people who will hurt him, or try to hurt him. You have the power to bring joy and goodness to this life, to counter for all the knocks and garbage she may encounter in the future. You have the power to shape and share a positive world to make up for the negativity that seems to surround so many. You can make a change to the world right now, today, by being the parent your child needs. By giving love, attention, patience, kindness and warmth to even one child, you are making the world a better place! For your child, for you, and for all who will encounter your child in the future. As a mom, that is amazing to me. My kids are older now and I'm able to see some of the results of my 'easy' work and I'm awed. They've become much more amazing people than I could ever have imagined. All because I was willing to give them a world filled with positivity, love, freedom and joy. Because I was willing to say "I don't know, let's find out" and "What do you think?" and "I love you"

You don't need anyone else's approval to open up a beautiful world, you just need love and a willingness to try. You may find that your own approval is all that matters to you after all.