Albinism Featured on 20/20 on ABC

I have albinism, a genetic condition that causes a lack of pigment in the skin, hair and eyes. This means I have very fair skin, bright blonde hair and blue eyes (blue, NOT red). Oh, an far from perfect vision. When I say “I have albinism.”, some people look at me funny. When I say “most people are more familiar with the word Albino.” Often a light bulb goes off. “Oh, I went to school with an albino.” Or, “My husband’s, sister’s, brother-in-law’s daughter is albino.” Many in the albinism community recoil at being called an albino. It doesn’t phase me so much, but that is a post for another day.

For me, albinism is an inconvenience. It is a pain slathering on layers of sunscreen, wearing a hat everywear and wearing sunglasses even on a cloudy day. BUT, at least I have sunscreen to protect my skin from skin cancer, I have contact lenses and glasses that help me see well enough to drive. I do not have the ultra rare kind of albinism that comes with medical complications. Nor, do I fear for my life every time I leave my house.

Since 2007, at least 53 (probably more) people with albinism living in Eastern Africa have been violently murdered for their body parts. The victims are tortured and killed by violent means as folklore often requires the killer to drink the blood of their victim to ward off dangerous spirits. The corpse is then hacked to pieces and sold to witch doctors for use in potions and salves.

I’m sorry, to be graphic, but the story is THAT disturbing.

According to ABC News, the story was broken by a BBC reporter who went undercover to try and expose the heinous crimes. It has been slow in starting, but there is a movement a foot lead by several non profit organizations including NOAH, Under the Same Sun, and Positive Exposure to shine a spotlight on these atrocities and force the governments to hold those responsible for these crimes accountable for their actions.

For more than a year NOAH has been working with ABC news on a story about albinism. The final product will air tonight on the ABC News show 20/20. There are stories of Americans with albinism, but most of the show is devoted to the crisis in Tanzania. There are preview clips here. From what I can gather this show is NOT suitable for a family audience.

I’m a little uneasy about the content of the show. For the most part, albinism is a rare and misunderstood condition. The lack of vision presents a real problem, but most of the challenges arise from our society’s intolerance of difference. I’m glad the situation in Tanzania is getting some attention. People with albinism there live a life very different from mine in so many ways. I hope that while they highlight the challenges that people with albinism face, they also show that people with albinism are not doomed to a life of suffering (at least not in the U.S.).

If course the irony of a segment about people with a visual impairment on a show called 20/20 isn’t lost on me.

Tune in an let me know what you think.

Friday Randomness


Last night was our annual trip to the fair. I love the fair, mostly for the food, but the crafts and the animals are fun too. But oh, the food. Last night I had three home made pierogies. 1/2 of a sweet Italian sausage with onions and peppers, a sixteen ounce old fashioned root beer, 1/3 of a funnel cake and 2 pieces of chocolate fudge. I resisted the gigantic donuts and the cider donuts. The only thing I didn’t see that I was looking for was chocolate covered bacon. Based on Twitter conversations, it is all the rage. Maybe next year.

This week’s episode of CSI New York really annoyed me. Yes, yes, I know it is TV, it is fake, but the whole technology is evil plot was annoying. Are any of the things that happened on that show possible? Yes, most definitely, but it wouldn’t be easy. Is it possible that one person could hack ALL of those systems and time things perfectly? No way! Yet, I’m sure there are some who watched that show who will never trust a GPS again. Grrr

On my walk this morning, I turned the iPod off when I started heading for home. I just walked and listened to the sounds around me. My mind drifted (as it is oh so wanton to do), but I just took a deep breath and studied the bright red leaves. It was nice. Think I might do that more often.

Towards the end of the walk, I encountered two kids waiting for the bus. I said “Morning” and they returned the greeting. Just after I was out of sight of their driveway, the little boy yelled “MORNING!”, I could hear his sister shhshing him, so I yelled back. He replied and I decided to add a twist and shouted “MARCO!”. I could hear him giggle. “POLO!” came the reply. We kept this up for the better part of a quarter mile. It was fun.

And so dear reader, those are the random thoughts occupying my mind on this fall morning. Later, I hope to have a post about a life threatening issue people with albinism living in East Africa are facing.

TTFN.

Quick Dinner Recipe for Leftover Roast Beef

We had a fabulous sirloin beef roast last week. Despite our best efforts, we had a ton of leftovers. A-Man and I enjoyed the remains for lunch and in a few sandwiches, and still there was enough left for a second meal.

I had planned to make beef stroganoff, but realized I didn’t have any noodles. You might be able to eat your beef stroganoff over rice, but I need noodles.

I pondered a few alternatives, but ultimately decided to create my own recipe. Introducing, Beef Stroganoff Pie!

Ingredients
1 Package prepared pie crust for a two crust pie.
1 Onion, chopped
Garlic Cloves chopped (I used 4, use more or less to your taste).
2-3 sm. cans of mushrooms (an equal amount of fresh mushrooms sliced if you have them).
1-1.5 C Leftover roast beef
1 can Cream of mushroom soup
1 can Beef broth
2 tsp Celery flakes
1 tsp Beef bouillon (you can eliminate this if salt is a concern)
2 tsp Parsley
Salt and Pepper to taste.

Preheat the oven to 400 degrees.

Bring the pie crusts to room temperature according to directions on the box and drape one crust in a pie plate.

In a 2 quart pan, saute the onions and garlic in your fat of choice (I used a little butter, but olive oil would work just as well) until the onions are transparent.

Add the mushrooms and saute until cooked.

Add the beef and saute for a minute or two (see the first note below).

Add the soup, beef broth and spices and bring to a simmer stirring occasionally. Let simmer for 10-15 minutes until the mixture thickens (you may need to add a little flour).

Pour the mixture into the bottom pie crust.

Top with second crust and poke holes in the top to release steam.

Bake for 25 to 30 minutes until top crust is lightly browned.

I served it with a salad. A-Man and I both liked it. The kids didn’t, but they don’t like beef stroganoff (thus why I need the noodles), so this doesn’t surprise me.

Notes:

The cut of beef you use will impact the cooking time on the stove top. If you have a tougher cut, you will want to let it simmer longer to tenderize. In this case, the cut was already tender, so I kept cooking time to a minimum to avoid over cooking it.

I meant to add a splash of red wine (1/4 cup or so and I use Merlot) to add depth, I definitely want to remember this for next time.

Next time I’d probably add some sliced carrots to the pie and serve with a loaf of cheesey garlic bread or crusty french bread.

If you can let the pie filling sit for awhile the flavors will blend nicely.

Try it and let me know how it worked for you. Did you add/delete anything? What did your family think?

My Birth Story – Part Two

Dear Mama To Be

Yesterday I told you of my first birth experience. Today I’ll share the second.

We started trying for number two when Fish was almost two and a half. We also decided to sell our house, put everything we owned in storage, move in with my in-laws, and start building a new house. Stress much? And I wondered why I didn’t get pregnant! I was unhappy with my new doctors and in general annoyed that my body couldn’t just get pregnant!! So, I talked with A-Man (who wasn’t as adament about a second child as I was), and we put an end to the quest for baby number two. We traded the minivan for a smaller car, and I made several work and volunteer commitments, and yes, six weeks later, I was pregnant (truly know how annoying this to those out there still trying to get pregnant).

The second time, I still desperately wanted that vaginal birth, but because I was a VBAC, my only option was a hosptial delivery, still I went the mid-wife route for pre-natal care.

Fish told everyone who would listen that she was getting a baby brother on June 1st. I told her again and again, that a) we don’t get to pick, we get what we get and b) that babies come when they are ready. Didn’t I go into labor at 5:15 am on Monday June first! It is worth noting that A-Man was on a 5am bus to Boston. I got Fish off to pre-school, called him and told him to finish whatever was urgent and to get on bus home. Again, start and stop. I did everything I could to keep labor progressing. When A-Man got home, I got permission from the mid-wife to get in the hot tub. That helped, but still with the stop and start. I called the midwives in tears. I wasn’t going 60 hours again. The nurse wasn’t particularly sympathetic. We went and registered A-Man’s new truck, picked Fish up from pre-school and I came home ang got in the shower (we have two heads oooooo, ahhhhh). That did the trick. I ate something, we sent Fish home with my in-laws and called the mid-wife. She asked if I could wait half an hour and I said yes if I could get in the hot tub (we kept it a 100 degrees). She said yes, so I did.

She called in half an hour and I could barely talk. It was time.

We drove to the hospital and during admitting, I puked on the nurse (2 for 2) and we did the tub again. I got cold and by 10 something at night 17 hours of labor at this point, it was time to push. I pushed, and pushed, and got nowhere. Rest, Try again, no go. The mid-wife went to get the doctor for a consult. I knew where we were headed and I didn’t care. This time I knew, it was just a process and what mattered was the end result. The doctor came in and had me push through a contraction and he agreed, they weren’t productive. Time for a c-section.

A-Man looks at me and says “Do you want me to call anyone?”. We flew solo this time because all of my close friends lived an hour and a half a way. No, I said. About 10 minutes later it occured to me that he wasn’t asking for me. I said, “Do you want to call someone?” Yes, yes he did! Ooops.

My Sister-in-law came and she was TOTALLY into the surgery. I was more with it this time and got a kick out of her interest. The doctor said “It’s a boy” and I clearly remember thinkging “What am I going do to with a boy?” then the doctor said “Ow!” Mim bit him on the way out. His APGRs were off the charts.

On his post-op visit, the surgeon told me that Mim was posterior too and that my hips were very small. He said the first surgeon should have noted my small birth canal and that frankly I should not have been allowed to attempt a VBAC. Even it the baby wasn’t posterier, it is likely he would have broken something on the way out.

I tell you my stories not to frighten you everyone’s experience is different. I own my choices. I’m horribly independent and hate medical intervention. In hindsight, I wish I had scheduled the second c-section, but at the risk of repeating myself, the final result is all that matters.

I know how hard you worked just to get pregnant and how much you have enjoyed pregnancy. By your own words, you are a control freak and a planner. I tell you my story to demonstrate that things don’t always go as you plan them. When it comes to labor and delivery, that couldn’t be more true, so do your best, but keep and open mind and be prepared to be ok if things don’t work out according to the pictures in your head.

Oh, an relax, you are going to be an awesome mom!!

Love,
Reesie

My Birth Story – Part One

Dear Mama To Be,

I’m sure you’ve already received bucketloads of a$$vice from people about everything pregnancy, labor and delivery and parenting related. You’ve probably heard more birth stories than you’d care to think about. If you are overwhelmed or feel like you’ve got it under contol than leave now, no hard feelings. If you are open to yet one more perspective, keep reading, and I’ll share my experience with you.

My overwhelming advice for you about labor and delivery is hope for the best, plan for the worst and know reality will be somewhere in between. almost ten years after my first delivery, I can assure that while at the time it seems momentous, in the overall picture, it is a point for reference, just like many others in your baby’s life.

Keep in mind, Fish was a Clomid baby and I wasn’t even supposed to get pregnant that cycle because my ovaries didn’t show enlargement (turns out I had a cyst masking the size of the ovary). Not only did I get pregnant that cycle, but at first, I was pregant with twins, the second sac self terminated within 10 days. I didn’t fight nearly as hard as you did for my baby, but it was work none-the-less.

Some would call my labor and delivery of Fish, a nightmare, I would call it an experience of my own making. I wouldn’t do it again (and I didn’t sort of), but I own my choices and have no regrets.

I read all of the literature about natural delivery. I’m not fond of lots of rules and I really don’t like medicine. Like you, I wanted to deliver at a birth center with limted medical intervention. I went into labor on a Thursday night and we immediately called my friend JS to come over. She and A-Man alternated by my side throughout the night. Labor started and stopped and started and stopped. Come morning we sent JS home. Labor started and stopped through out the day. I called the birth center, they didn’t want to see me yet. The start and stop when on all day Friday and Friday night. Finally, at 11pm Friday night, the mid-wfe suggested some wine to relax me so I would sleep. I only had hard liquor in the house (not even a beer). At this time, A-man didn’t drive, and JS is a recovering alcoholic, so getting wine was out of the question. Let this be a lesson to you :).

I was BEGGING the midwife to let me come in so I could get in the tub. Ours wasn’t big enough and I was convinced that time in the water would get things moving. No go, I wasn’t far enough a long and they were short staffed.

I took a long hot shower and went to bed. Again with the start and stop labor. Saturday afternoon, I got permission for JS to take me to the Y so I could get in the pool. I swam throughout my pregnancy, so they were used to seeing me. I was right. We got in the pool and almost instantly contractions started coming at a regular interval and then buliding with intensity. We swam for an hour and then headed home. Finally I was allowed to come to the birth center. It was 7pm. I was in that soaking tub as soon as she checked me. Labor kept building, but I wasn’t getting anywhere. I rested and tubbed and nothing. Mostly the mid-wife left us alone to labor, which was what I thought I wanted. JS was growing concerned that I wasn’t progressing and after the mid-wife checked me at 3am, Jeanne followed her and advocated for me, strongly. We had notced a valley in my stomach and a tight band around my abdomen. The mid-wife thought that maybe she should call the doctor. I knew at that point, we were going to the hospital. It was more than 50 hours at that point and no doctor was going give any advice without seeing me. I was right. Part of me was dissapointed, most of me was exhausted. I knew I’d given it my best, and I just couldn’t do anymore. I remember sitting in admitting and the very young girl asking me questions and growing impatiet when I wouldn’t answer. “Contraction” A-man growled at her. A-man doesn’t growl at anyone. The doctor checked me and Fish was ok, but showing signs of fatigue as was I. “I know you don’t want a c-section, but I think it is best for both of you.” At that point, I just wanted it to be over. Then, my concern switched to A-man, medical stuff ain’t exactly his bag. I told him if he didn’t want to come in, that was ok. He said he was good, but JS would likely be a little closer to the action than he was.

They prepped me for the ER (including giving me something to empty my stomach), I vommited bile all over a nurse, lucky her. A-Man told me he called his mom and he & JS were prepped for the OR with me. I went in first and the anesthesiologist told me to roll on my right side. I told him to go to hell. Enter the world’s smallest nurse. I swear she couldn’t have been more than 4’ 8’‘ and maybe 80 lbs. soaking wet.

”Sqeeze my hand“ she said.

”I’ll hurt you.“

”Squeeze my hand“ she barked. I did and the anethesologist gave me the epidural, at which time they rolled me on my back and I promptly told him he was my best friend.

The surgery was painless. JS was right beside me and A-Man, behind her.

It’s a girl YESSSSS, I was right.

”Oh and she has the brightest blonde hair“. No shock there really.

Fish had some meconium in her lungs, so she and A-Man went to the NICU while JS stayed with me as they finished up.

They brought Fish to me in revcovery and after a little encouragement, she latched on.

Once I could move my legs, We were brought to our room. JS, went home, and Grammy and Grandpa arrived. They took A-Man back to the house and out to breakfast (where he fell asleep sitting up), Fish went to the nursery (something I had not planned on, but I was SOOOOO exhausted, I knew it was for the best).

We all got a few hours sleep and they brought her back to me to nurse. From then on, she was with us unless we went downstairs to grab a bite in the cafeteria.

All totaled, I was in labor for close to 60 hours. Fish was head down, but posterier (facing the wrong way) and there was no way she would have made it out vaginally. Because of the c-section, I had a 4 day stay at the hospital. For someone who vehemently did not want a hospital birth, I had a great hosptial experience. I even wrote a letter to the director of nursing to complement her awesome staff.

Coming out of that experience, my advice to any who asked was a) trust yourself b) listen to your body and c)remember it is the end result that matters.

Tomorrow, the arrival of Mim.

I Love the Internet Part 2

As I have said many times, I love music. I’m not a fan of rap and I don’t really appreciate opera, but you’ll find a sample of almost every other kinds of music in my iTunes Library.

When I was a kid, traveling sales people used to visit large places of business and peddle their wares. One such sales person sold records (you know the plastic discs) at the newspaper where my mother worked. One day she came home with A Friend of Mine Is Going Blind by John Dawson Read. Never heard of it? The title single hit only hit #70 on the Billboard Charts. Other than the title track, there was one other song that stuck with me all these years. Sally Ally Sunday is a song about a family taking a day trip and spending time as a family. The music is guitar and mostly mellow folk.

I liked the record and played it incessantly. Over the years, I recorded many of my LPs (go look that term up kiddies), to cassette tape (oh and that term too) but A Friend of Mind Is Going Blind never made it. I’ve searched for it in the digital world, but had no luck. August saw us taking a lot of Sally Ally Sunday trips as a family and I decided to hunt once again for this piece of my past.

This time, I found a lyrics site that listed lyrics for A Friend of Mine is Going Blind. Somewhere in the comments. someone listed a link to John Dawson Read’s web site (I’d Googled him, but spelled his last name Reed). Jackpot! I learned quite a bit, turns how he had two commercially available albums and had just recently turned out a new CD of studio songs.

On a whim, I emailed and asked where I could purchase a digital version of Sally Ally Sunday. HE WROTE BACK!! Not only did he write back, he attached an MP3 of Sally Ally Sunday! I was seriously over the moon. He also told me that the original album had been digitally remastered. I ordered a copy and it arrived promptly, I’ve been enjoying the meander down memory lane as I listen to it.

I LOVE THE INTERNET

I Love the Internet Part 1

As we sat at the picnic table devouring an amazing labor day meal, D (as he is wanton to do), began to sing. I don’t remember the song exactly, but I’d bet that it was Jimmy Buffett song. Then he said “Second verse same as the first a little be louder and a whole lot worse.”

I knew that lyric was from a song we sang at Girl Scout Camp, but for the life of me, I couldn’t remember the song. I stretched and stretched and while I could see the dining hall and remember the meals and the pastel plates. I could not get my head around the song.

It was really bugging me, so, I did what any other 21st century woman would do, I hit Facebook. I posted the lyric and begged for help. Within an hour, I was rewarded with my answer.


Fried Ham, Fried Ham, Cheese and Bolgona, and after the macaroni we’ll have some onions, and pickles, and peppers, and then we’ll have some more fried ham, fried ham, fried ham…

THAT’S IT! Thanks TM! There were others who pointed out it was from Henry the 8th, but Fried Ham was the song I was looking for.

The memories came flooding back
, the dining hall, the summer barn program, the musty tents and the latrines. Good stuff (well except the latrines of course).

Tell me, how did we get by without the Internet???

The Song Remembers When: Fried Ham

I love music. My life is always accompanied by a soundtrack. If the radio isn’t on my iPod is blasting or songs are just roaming through my head as I make my way through the world. There are some songs I associate with specific experiences, events or locations. With this series, I make an attempt to document some of those associations.

The song: Fried Ham
The artist: The Girls Scouts at Camp Tohikanee
The location: The Dining Hall

A sunny August day at the dining hall at Camp Tohikanee (Tok i khan ee) in Eastern Pennsylvania. The dining hall was one of the more modern buildings at camp. It was V shaped wood and glass structure with large “sheds” at either end. The sheds were filled with gravel and the walls were lined with hooks fit for backpacks and rain gear. There was one side of the V that was used more than the other. For whatever reason, we always ate on the right side. Only occasionally, were there enough campers that would necessitate using a tables on the left side.

Inside, the back wall and high angled ceiling were wood paneled. The left wall (or the inside of the V) was glass from the floor to 3/4 of the way up the wall, with a view of the flag pole. The floor was concrete covered in a shiny, burnt orange finish (built in the 70’s anyone?)

There were two rows of tables. Each table was square and sat 8 people on 4 benches. Which seat you took denoted which job you had at the meal. Each unit was responsible for setting up for a meal a few times each week. Being inside first, meant you missed out on the pre-meal songs and games, but, you had your pick of seats. You could be a runner, a server, a scraper or the drinks person. Other jobs were assigned on an as needed basis. Experienced campers knew to find the seat they wanted and stand behind it to wait for the staff to enter. You worked hard to get your favorite counselor to sit at your table.

Once everyone was in place, grace was said and then everyone was seated at once. The runners were dispatched to pick up the food, drinks were poured and the meal began in earnest. The noise level began to rise as silverware clanked and the pastel hard plastic plates and serving dishes were passed around. You had to wait for everyone at the table to finish. The scraper would scrap the scraps into a bowl and any excess drinks were poured back into the steal pitcher. Once all the plates were cleared, the wiper stayed behind to wipe down the table and benches and the sweeper stayed to sweep the floor. Everyone else scampered outside.

We’d gather around the flag pole as long a it wasn’t raining hard, otherwise, we’d gather in the gravel under one of the sheds and sing camp songs. Perennial favorites, included John, Jacob, Jinglehimer, Schmidt, Mrs. O’leary’s Cow and, Fried Ham.

Fried Ham, Fried Ham, Cheese and Bologna, and after the macaroni we’ll have some onions, and pickles, and peppers, and then we’ll have some more fried ham, fried ham, fried ham…

Second first same as the first British accent makes it a whole lot worse.

We’d go few a few accents (Chinese, Southern, etc.) and then move on. In hindsight, it is politically incorrect, but wicked fun at the time.

I attended Girl Scout camp for at least 4 summers. A one week sports program the first year and the two week barn theater program each of the other years. I have wonderfully fond memories of camp. Mim’s not quite ready to be away from home for a week, but that time is coming and I hope her experiences are as good as mine.

Insuring We Never Forget

http://www.boston.com/news/local/massachusetts/articles/2009/09/11/schools_grapple_with_how_to_teach_911/ I read this article this morning and I could only shake my head in agreement.

Mim was not even 18 months old on September 11, 2001. She has no recollection of the fear, the panic and the tears that surrounded that time. We were fortunate not to lose anyone in the attacks, but we were directly impacted by the events of 9/11. We lived just outside of Boston, the origin of two of the planes. We heard the jets overhead in the hours that followed and in the days that followed, my husband’s company would be adversely affected as a result of the attacks.

I wrote a detailed journal entry for her that night, but I’m not sure she’s old enough to completely process what happened. She’s an anxious kid and she stews on things, chews on them and ponders every angle of a situation. She worries. She’ll want to know about all the the dead, how they died and what happened to the families they left behind. Details, she’ll want the details.

Make no mistake, I want her to have this information. I want her to know the villains who committed the heinous act and more importantly, know and remember the heros “who died, just doin’ what they do”. The challenge is knowing what to say and how to present it in a way that makes it real, but not overly threatening.

The topic came up at dinner recently. A-man, said something and the questions started coming rapid fire. We weren’t prepared and her little brother was right beside her. The age difference added yet another layer to the discussion. I think we did ok, but out of respect to those who died, and lost so much, we both want to do better.

What have you said to your children?

Time

Summer is over; I have to wear my watch again.

Over summer vacation time was more or less relative. There were a scant few times when punctuality was required, but now that school is back in session and both kids are gone for at least part of the day, timing is everything.

Time is of the essence especially in the morning. Time to wake up, early enough to make the bus, but late enough, to savor every last precious moment of slumber. Time to eat, time to get dressed, time to GO! Our bus stop is early on the route and our bus driver is prompt. Mr. C. is at the bottom of my driveway at 8:11 every Monday through Friday excluding holidays. At 8:12 they are off to school, where their schedule is thankfully beyond my control, and I am off to my day.

Kindergarten is only a half day so I have a brief three and one half hours to myself. This may sound like a lot, but let me assure you it is not. We’re only eight days into this school year and I can already tell if I’m going to get anything accomplished, I’m going to need a solid plan of action heading into the day. And, I’m going to have to eliminate all distractions. Otherwise, those three and one half hours will slip away and I will be back at the bus stop not having accomplished a single thing.

Time after Noon moves at a different pace depending on what is on the agenda and if Mim is happy to play by himself. If the afternoon is consumed by errands, time is compressed. If there is nowhere to go or Mim is pining for his sister’s companionship, time passes at a speed comparable to ketchup oozing out of a glass bottle plop by agonizing plop.

Eventually, four o’clock will roll round and Fish will join us. Then, time speeds up. There is downtime, homework, dinner, lunches for the next day, tubs and showers, reading, and bed. By then, I don’t need a watch to tell me that it’s almost my bedtime. I remove my watch, crawl between the sheets and set the alarm so I can get up and do it all again.

I’m already looking forward to June, when I can once again lose track of my watch and the time.