Exercisewise, this week was rough. It was a combination of things, Daylight Savings Time kicking my butt, a sore throat bug and stress. Since I’m thinking all three of these things will continue to occur on a regular basis, I need to find ways to overcome.
On the bright side, I’ve been good about my food journal but I haven’t eaten as well as I could have. One night I ate four Do-Si-Dos (Peanut Butter Sandwich Girl Scout Cookies) because I was so hungry and it was the only snack I that “appealed” to me. At times it is as if a part of me is fighting this new way of thinking and I sabotage myself. It is as if, that part of me realizes I’m serious this time and change is imminent and that part is pouting with fists full of chocolate bars and stamping it’s feet like a child saying “HELL NO I WON’T GO”!
I had a major epiphany this morning while updating a friend on a family member’s health. I say of the family member, “he talks a good game, but she is just making excuses” (pronouns changed to protect the guilty :)). It hit me like a board in the face this morning, OMG, am I doing the same thing? At times, yes. I should have skipped the !#%@ cookies and had some almonds. There is no law on the books that says you can’t have the same healthy snack two times in one day and seriously six almonds would have most assuredly been better for me than the four cookies.
On the bright side, I have run three days of Couch to 5K and enjoyed it every time. I love being outside again. I found a few videos on Netflix that I like and I have one of Leslie Sansone’s walking DVDs waiting to be tested (Hat Tip to The Blog Antagonist for the Leslie Sansone reco). I rode my bike for 3 muddy miles with my daughter last weekend too. Can’t wait to do more of that!
In case you hadn’t guessed, I am an impatient perfectionist. If I read this like a friend wrote it, I want to hug her and cheer her on and say “Great start! Good realization, do something constructive with it! Keep up the good work”, and yet here I sit annoyed that I ate four cookies the other night. Sometimes I guess I’m my own worst enemy! One battle at a time I guess.
I have albinism. Most people are more familiar with the word albino. Albinism is a genetic condition that causes a lack of pigment in the skin, hair and eyes. I can legitimately say I am not wired according to diagram. The nerve pathways from my eyes to my brain are not the normal 50/50 split like most people, they are more like 80/20 favoring my left eye. This means I only see out of one eye at a time. Due to my lack of pigment, parts of my inner eye didn’t develop correctly, add that to my astigmatism, and photophobia (sensitivity to light) and my vision just isn’t all that great.
My response to all this is yeah, so what? Big deal. Remember, this is my normal. I have always seen this way. I know nothing else. This is also a response developed over many years and after conquering many barriers.
I was raised in a loving supportive home. When the doctor gave my mother the diagnosis, he said I’d be blind and not to expect a lot from me. Fortunately, she ignored him. She encouraged me find my own limits and disregard the limits others placed on me.
It wasn’t always easy. Kids can be so cruel. I looked different and I acted differently. I was teased mercilessly. They called me Snow White, Casper and The Pop ‘N Fresh Doughboy. On the bus in middle school, they would steal my hat and play keep away. When you combine bright sun light streaming in the windows and a small item changing locations quickly, I lost a lot of hats.
In eighth grade, I finally had the opportunity to meet someone else who looked like me. I met Jan, an adult woman with albinism. It was a life changing experience. I realized it wasn’t just me; I was not alone and it was going to get better.
For me, having albinism isn’t a big deal. Others with the condition face greater challenges. Some are ostracized by family, made to feel less-than and incapable. They don’t get the support they need emotionally and in their education to become successful, self-sufficient adults. I know first hand that the work NOAH does to educate parents, professionals and those living with the condition is vital to improving lives today and ensuring that future generations will be raised to be independent and successful.
Like most non-profits, NOAH produces a newsletter, and educational materials that are available in multiple formats and languages. There is also a web site that offers an online forum where people can ask questions or share experiences and receive feedback in real time. NOAH maintains a list of rapid responders around the country who can be in touch with people who are newly diagnosed to provided information and support. Every other year, NOAH hosts a national conference. Last July almost 1000 people descended on our Nation’s Capital to learn about the latest about genetic discoveries and low vision aids as well as share experiences.
This summer, NOAH will hold its 5th annual family camp. This year, camp will be offered in two different locations. Camp is a place where kids with albinism, just get to be kids. Indoor activities are scheduled at peak sun times and swimming takes place in the evenings. There are rock walls paddle boats, zip lines, archery and fishing. Kids bunk with counselors (most of whom have albinism or are directly related to someone who does). Parents have time to connect with other parents and watch their kids thrive. The experience is far more social than education, and yet much is learned in a very short time.
At NOAH Camp the unaffected siblings are the minority & Fish climbs her first 50 foot rock wall, she was so proud of herself
I’m great at doing on behalf of NOAH, I’ll write an article, make a phone call or speak on a panel. The one area I seem to falter is fundraising. I think it is because of my outlook. I don’t think having albinism is a big deal, the people around me know it isn’t a big deal so I’m loathe to ask for money for something that “isn’t a big deal”. Yet if I stop and think about it, it took a lot of work by a lot of people for my perception of albinism to develop to the point where is wasn’t a big deal. My mother knew nothing when I was diagnosed. There was no early intervention. There was no Internet. She asked questions and talked to eye doctors, teachers for the visually impaired and classroom teachers. She watched me an synthesized the information and made decisions. Was she always right? No but she had a pretty high average in my opinion.
Mim and his buddy M yuckin' it up.
Now I am a parent to two children who also have albinism. I can’t imagine what it must have been like for her to negotiate all this with little or no support. I know what is going on and still I bang my head against a wall. NOAH was founded so others wouldn’t have to walk this road alone, so parents could have information at their finger tips. So people with albinism could meet others with the condition sooner rather than later.
We’ve accomplished a lot, but there is more to be done. The condition is genetic so there is not “cure” and there are always new people being diagnosed. There are so many we haven’t reached because of distance and funding.
The fact that having albinism isn’t a big deal is attributable to my mother and NOAH. My mom set me on the right path and NOAH has introduced me to others with similar experiences who continue to educate me and enrich my life to this day.
Our family is hosting a skating party for NOAH this weekend. If you are local, please join us. If you can’t make the event but still want to support the NOAH, visit our fundraising page to make a donation. NOAH is a registered 501(c)3, so your donation is tax deductible.
While I have it good, it is vital that NOAH continues to educate and raise awareness so that others can experience independence and self-fulfilling lives. Your support is much appreciated.
I went to the doctor on Monday. Nothing scary, just an annual check up. The number on the scale was U G L Y, ugly! I never managed to shake the pregnancy weight gain and in the years since the kids were born, I’ve only gone up. I’d been holding steady until recently. I knew I’d gained some weight, but I didn’t think it was THAT much. See, I sort of have this denial thing going on. I look in the mirror and see a woman who is overweight, but doing ok. Then recently I’ve seen myself in pictures and I swear my thought pattern was “wow, the camera really does add 10lbs.” Guess what, it’s not the camera goober! Ooops.
It is time for a change.
Monday was an awful day for eating. It was stressful and I was on the go from 7am to 7pm. In the midst of it all I had 10 minutes before I had to be at my next appointment and I zipped into a shopping center passing the Starbucks and heading to Staples. I bought a funky composition book and some new pens, my new food journalling tools.
See here’s the thing, I don’t DO diets, I like food too much (well DUH!). No, I mean I can’t do boxed meals or canned shakes. A – I’m committed to eating fewer chemicals and B – YUCK!! I am a picky eater. I like full bodied food with flavor. Clearly, I’m just eating too much of it. The whole measuring EVERYTHING and counting points sounds stressful. I don’t want short lived change, I want to make wholesale lifestyle changes.
My hope is to write down everything I eat and how I’m feeling and see where and when I can realistically make cut backs. Let’s face it I am not giving up chocolate forever, but perhaps I can make better choices. Once I have a few weeks recorded, I’m going to make an appointment with a nutritionist to get an expert’s opinion.
Monitoring food intake and cutting down on sweets, are obvious steps but the other component of my plan is to increase my exercise. To that end, my crazy neighbor is already offering her support. She convinced me to sign up for the Renegade Playground 5K Mud Run. Thus far, the Weasel/Whippet team is fielding 13 contestants and the chatter on Facebook is already beginning as Coach Becky encourages us all to train. There isn’t a description of the course on the site, but as best I can tell it is a 5K combined with mud, tunnels, mud pits, obstacles, mud baths, and did I mention there will be mud? My goal is just to finish. I don’t care if I’m dead last for my wave, if I complete it, I’ll be happy.
I got out today and started Couch to 5K (C25K) a running program that starts slow and builds your endurance until you can run the full 3+ miles. There’s even and app for that :). I grabbed the C25K app from Bluefin software from iTunes. It tells me when to switch from walking to running and allows me to play songs from my iTunes library. I plan to alternate C25K with EA Sports Active on the Wii. I might even throw in a few bike rides just to keep things interesting.
I’m nervous, I’m not a particularly coordinated person but, I need something to work towards because while I’ve been exercising for months, it just hasn’t been enough. It is time to put it all together and get healthy once and for all. I’m excited because most of the others on our team don’t run regularly either and while I’m sure there will eventually be some trash talk, for now, we are all cheering each other on. We have one ex-military guy, so he’ll sail by us, but that’s ok, because someone has to do us proud.
Despite the houses in our area being spread out, we have a neighborhood. I blame Becky. I affectionately refer to her as my crazy neighbor. Crazy in a good way. She has boundless energy and is just bursting with creative ideas. She and her husband Marc have four kids aged 6 and under yet, they are some of the most laid back people I’ve ever met. They are always there to lend a hand, grab a kid off the bus and frequently they open their home to their neighbors for fun times.
This year’s abundant snow fall has enabled the return of the luge. Marc built the first one a two years ago and it was an instant success. Ever since he’s been busy drafting an expanded design. Last year was a snow bust, but this year has been a gold mine for luge construction. This year’s luge features 50% more sliding space including a straight run built for speed and a curvy run full of twists and turns.
A view from the top
You can’t hear it, but he is saying, go, Go, GO!!!
No fear!
Becky tries out the luge (and sticks the landing!)
We are so grateful to have such fun, community oriented neighbors!
I may complain about some things about living in New Hampshire, but there are many wonderful things about living here too. I love the winter and I love to be outside enjoying the cold weather activities. I’ve decided that people who don’t like snow don’t have the right gear. A good pair of long underwear and waterproof snow pants are crucial to enjoying the brisk temperatures.
My husband was shocked this local church not only allows sledding on their hill, they encourage it. I guess they don’t have many lawyers in their congregation. 🙂
Some of the parents built an awesome jump!
I ❤ this shot.
My mother used to refer to this rosey cheek condition as “Chink Peeks”
Day is done, gone the sun, time for some hot chocolate!
I live with a six year old boy. He is constantly pondering this world we live in. “What if cars could fly?” What if? “What if dogs had two heads?” What if? “What if we ate breakfast for dinner and dinner for breakfast?” What if?
After all the kerfluffle in the New Hampshire media about educational funding (HB39, the push to repeal Kindergarten etc.) I have a “what if” of my own.
What if, we stopped treating education as the red-headed step-child and instead made it the Queen? What if we actually poured money into the educational system rather than targeting it for cuts at every turn?
I have my theories about the outcome of such wild ideas. If our system of education was fully funded, class sizes would be smaller and children would get more individualized attention. Students would truly be able to learn at their own pace. Children with mental or developmental challenges could be identified early and their issues addressed through additional support or services. This would give them the tools they need to feel successful early on thus building confidence as they make their way through school.
In New Hampshire, the legislature wants to shift control of funding and curriculum away from the state and into the hands of local districts. While local control sounds great (let US decide what our kids are taught BOOYAH!) From a big picture perspective this idea has disaster written all over it. It all comes down to money. We don’t have an income or sales tax here, so the majority of our revenue is raised via property taxes. There are a number of communities throughout the state with little or no commercial tax base.Their funds are raised almost exclusively from fees and property taxes. No one EVER wants to pay higher property taxes, so funding for the basics (albeit necessities) like roads and schools is very hard to come by.
By keeping the control of the curriculum at the state level, you insure that funding for schools can only be cut so far. I understand the frustration of the “unfunded mandate”, but on this issue, I err on the side of insuring the availability of a good education for all.
Education leads to a skilled work force and innovation both of which are critical to building a strong economy. A strong economy typically means a lower crime rate which means fewer people are incarcerated which means less taxes. A strong economy means lower unemployment. Lower unemployment leads to less welfare. Less welfare leads to lower taxes. Lower taxes leads to more discretionary income.
If we want to break the cycle, we have to insure that every child gets a solid education. A good education costs money, but in my opinion it is money well spent. I’d rather pay for the positive of education than the negative of incarceration or long-term welfare.
My friend Cammy and I share many similarities. One of our shared loves is food. We both have a passion for healthy, unprocessed foods and enjoy being in the kitchen. Last fall we took a cheesemaking class. Yesterday, we took a bread making class. We took Bread 101 from King Arthur Flour’s Baking Education Center in Norwich, Vermont.
I love bread (I’ve got the hips to prove it). Somewhere there is a picture of me in a walker (it was the late 60’s don’t judge), standing beside the bread drawer at my Aunt’s house. I’ve pulled out the bag and am a happily noshing on a slice of Wonder Bread. I’m can say that, my taste for bread has improved greatly over the years.
This class was amazing and so much more than I expected. We left the class with 3 loaves of fresh made bread and 8 scones (well, I left with 7 because, I ate one fresh from the oven :)). We made a basic white bread that we shaped into a loaf for a pan as well as a braided loaf. We also made pane scalita, a traditional italian bread that is made with a mix of all purpose flour and semolina, then shaped and topped with toasted sesame seeds. The class was tightly choreographed yet it didn’t feel rushed. While the white bread was resting, there was a demo for the pane scaliata and while the other breads were cooking, we made a quick batch of buttermilk scones. Scones will never intimidate me again.
I have a bread machine, but after taking this class, I’m not sure I’ll be using it a lot. Melt-in-your mouth bread is the most amazing experience and it really isn’t that hard to make. The act of kneading the dough is also very calming. Irene was our lead instructor and Karen was her support. They were both wonderful. They were full of tips and tricks, encouragement, gentle correction and lots of complements.
The fragrance as the bread began to bake was almost soothing. We all oohed and aaahhed as the breads came out of the oven. Then they cut up the demonstration loaf of white bread. There was a collective sigh of contentment as we enjoyed the fruits of our labor. After the class, Cammy and I headed across the street to the King Arthur Flour Baking Store and put our 10% coupon to good use.
The King Arthur Flour Baking Education Center is about 1.5 hours from Concord (just down the road from the Montshire Museum and a stone’s throw from Hanover, New Hampshire. Follow the directions on the web site (or enter the exact coordinates in your GPS, ahem). The campus is located right of exit 13 of I-91 in Vermont.
I was not compensated in anyway for these words. These are purely my opinions.
I had bananas long past their use by date and I love chocolate and peanut butter, so I made Craving Cookies. They are funky, but good.
I was supposed to make Greek Meat loaf (a variation on this recipe), but realized I only had about a tablespoon of Feta and that wasn’t going to cut it, a quick search on AllRecipes.com turned up. Greek Lamb and Orzo YUM!! I sprinkled some of the feta I had on mine and added just a smidge of plain greek yogurt for a creamy, flavorful taste.
While we were in Disney last month we had roasted chick peas. Um, YUMMMMMMMMM! And they were easy to make too. I think I may have just found my new favorite snack.
Lastly, while I was buying chickpeas to roast, I threw in two extra cans to make hummus and since I was on a roll tonight, I went there too. I thought 2 cloves of Garlic wasn’t enough, but I went overboard with 4. This made my husband laugh, because peeps, I LOOOVVVVVEEE me some garlic, but when you dice it, it gets stronger and 4 cloves was just too much. On the bright side, we aren’t in danger of being bitten by vampires. On the brighter side, A-man has some too, so at least I won’t scare him off.
Now for the truth in advertising. I made spaghettin for the kids. I asked them to try the roasted chick peas and neither liked then but for different reasons. A-Man, wasn’t keen on them either which leaves more for me :). We both enjoyed the lamb and orzo dish. Everyone except Mim liked the cookies. He might have eaten them if his sister hadn’t mentioned the reminded her of banana bread.
After all that, I’m exhausted, so I’m off in search of a glass of wine.
I was in AP American History. I chose American History because I liked it better than European History, but more importantly, I liked the teacher, Dr. Paul Dickler, who also happened to be our Senior Class Advisor. I loved “Doc”. I would swear his Ed.D was in teen relations. He knew how to connect with students from all segments of the population of over 2,800 students.
I was in eigth grade when the first shuttle launched. Our whole school tuned in. I was mesmerized. I could only imagine what that ride away from the Earth’s gravitational pull felt like. Somehow or other, I managed to watch every subsequent shuttle launch. By then, shuttle launches had become “routine” to many people. I was still enthralled and I wasn’t going to let no stinkin’ college level history class break my streak. I watched the clock carefully and at two minutes to launch, I suddenly had a desperate need to use the bathroom. It was a small class, so I exited as subtly as I could. I think Doc may have asked if I could wait until a section break, but I was clear I needed to leave THEN.
Alas, my timing was off. As I strolled by the science class down the hall, I heard the announcer say there was still T-4 minutes to launch. No way that teacher would let me hover in his doorway for four minutes. Off to the bathroom I went. I passed the time, washed my hands and made a slow saunter back toward my classroom. I made it to the science class doorway by T-30. All I eyes were focused on the TV monitor threatening to topple the rolling cart in the corner. No one even noticed me.
“3-2-1 and lift off! Lift off of the 25th Space Shuttle Mission!”
“Flight controllers here looking very carefully at the situation. Obviously a major malfunction.”
Like everyone else, I was transfixed. What just happened?
Silence.
The long silvery smoke trails ran down the screen like raindrops on a windshield. Then finally “The vehicle has exploded.” As if universally choreographed, we all raised our hands to cover our to mouths.
It was then that the teacher turned and spotted me. He gave me a nod as if to dismiss me. I quickly withdrew to the hallway and made my way back to my rightful room. I returned the hall pass and moved towards my seat. Doc looked at me as if to acknowledge my extended absence. “The Space Shuttle just exploded.” I said.
Doc’s reaction was immediate and fierce. “What? That’s sick! I can’t believe you would say that!”, as if I was playing a twisted prank. He glared at me and I took my seat. His words stung because I was so fond of him and I thought he liked and trusted me. I knew it was the truth, so I kept my mouth shut. My classmates all looked at me shocked at Doc’s outburst and clearly wanting more details. With an uncharacteristly scathing, silencing, sideways glance, Doc resumed the class. It was only a minute or two later, that Mr. Evans, our principal interrupted classes over the loudspeaker confirming my story.
Doc, turned sharply to look at me a stunned expression on his face. It was probably easier for him to believe a high school student would play sick prank then to think that the space shuttle had exploded. “I’m sorry.” he said quietly. I shrugged. What was there to say? He asked me to share what I knew and we discussed it briefly then tried to focus on American History for the last 15 minutes of class, It just wasn’t possible.
On the 25th anniversary of the explosion, I find myself living in New Hampshire. I have friends who had Ms. McAuliffe in high school. She is legend (rightfully so) in these parts. Her parents worked to continue her legacy, her husband withdrew from the spotlight to raise their children. New Hampshire mourned their heroine and then worked to honor her legacy while fiercely protecting Steven McAullife’s privacy.
I am married and have two children who are almost the same ages McAullife’s were at the time of her death. While I can’t imagine leaving them without a mother, I can completely understand Christa McAullife’s desire to travel into space and share what she learned. I applaud her drive and I thank her family for their sacrifice.
Generations before me talked about where they were when President John F. Kennedy was shot or when the lunar module landed. The Challenger Explosion stood as my “where were you when . . .” moment until September 11, 2001. I think two in a lifetime is more than enough, don’t you?
Live Fearless Lee 