Megan's got 47

Have you all seen or read about this case of TB. It is so scary but for me it is all a little bizzare and unreal.
Did you read that this man married the daughter of a CDC microbiologist whose specialty is TB???? How did this guy get TB? It is all a little strange to me.
But my feeling is that yet again doctors haven't a clue what they are doing...and also had a hand in this man "possibly" infecting a dozen other passengers on that airplane.
Has anyone heard any other news on this? I am so intrigued by this story.

This month of May has been absolutely one of the best months in my lifetime.
I got to meet so many wonderful people and their angels.
This month I organized a downsyn (down syndrome forum) meet at Sesame Place and a BBQ at my house.
My friends (The Coppin's) Helen and Andy from Nottingham England came to stay with us for 9 days and became "family." They have the most wonderful children and are our "Across the pond counterparts." We all had so much in common. We are already talking about us going to England which would be just UNBELIEVABLE! I have not traveled much in my life so that would be awesome.
Right now I am missing having good conversation and playmates for my kids.
We talked everynight after the kids went to bed and enjoyed good wine, beer and company.
My kids loved Andy and everday had a few "cuddles" with him. He is such a good dad.
Helen is a free spirit, have a good time kinda gal and always shows the kids a good time as well. She is a fabulous mom. Our swingset never saw so much use....I think it is about to fall down....LOL
Our 1st night together I made a big Spaghetti dinner that lasted us a couple days. All the kids ate so much they were orange and ended up sharing their 1st bath together. Helen's kids never saw "tub tints" before so were amazed that we could make the bath purple!
The next day we got up and headed to the Jersey Shore for the day where the kids enjoyed the sun and sand and I enjoyed my sunburn :(...Megan got a little too much sun too...
3rd day we traveled into Philadelphia where we went to The Franklin Institute for the day...what a crowded place it was but the kids enjoyed it! We had to drive home in a rain and lighting storm....Did I tell you in England they drive on the wrong side of the road...I mean the left hand side of the road....Andy was such a trooper following me!
4th day was chill...The Coppin's family went to an American Mall and enjoyed shopping all day....I got a little nervous thinking they got lost....they were gone for a whole 8 hours...LOL
Andy would be happy never to see another mall again....
5th day everyone was arriving for our Sesame Meet. Joe (my dh) took off of work to take Andy golfing....they did not do so well! Lisa (danielsmommy) from RI was in early and able to take Helen and family, my dh and Olivia out to lunch so they could meet the Coppin's for the 1st time. I had to take Megan to school so I missed out on the lunch! But that night we all (downsyn members) met up at Bouncing Off The Walls for fun and pizza! We got to see Ecki and Kayla, Rhonda and Dylan, Marge and Becca, Lisa and Daniel!!!!! Lisa and Sarah got stuck in traffic as well as Elisha and Elijah :(
6th day, the crew gathered at the Sesame Place gates to go in for BREAKFAST WITH ELMO! I, however decided not to go to Sesame and opted to set up for our BBQ. Everyone came over after Sesame around 6pm and we cooked out on the grill and made hamburgers and hotdogs (compliments of Coleen and Nolan)...Tom and Michel, Beth and Mikey creators of downsyn were able to come which was a definet highlight! Marlene and Aleena were able to come from Lancaster for the dinner which was nice....they were hosting the Coppins family in a few days and wanted to meet them.
7th day Some of us meet for breakfast at Burger King where the kids played on the playground for hours. We had to say our goodbyes to Lisa and Daniel because they had to head home to RI :(....But Sarah'smom, Helen and myself decided since the guys went golfing...we would get to do something for ourselves, so we went and got a manicure and pedicure and enjoyed some much needed rest and relaxation...although Helen's was a bit rushed by how fast her guy was....LOL
8th day Helen and Andy packed up for DC and Sarah'smom and myself packed our kids up for the Crayloa Factory....we waved goodbye as The Coppins went South on 95 and we headed North. I took Lisa, Don and family an hour and 15 minutes to a CLOSED CRAYOLA FACTORY :( What a bummer huh! So we went through the gift shop and ate at McDonald's before truddging all the way home.
between 9th and 15th day Helen and Andy were in DC and Lancaster PA...we went back to reality for a short while until late Sunday night The Coppins returned. Kids fast asleep and back at home base to finish out there stay.
16th day- I dropped them off at Trenton train Station where they bravely boarded for NYC. They toured the city and then took another train to Long Island where they stayed with Tom and Michel of downsyn. They really enjoyed there stay.
17th day- I picked them up around 5pm in Trenton and they came home to an Indian meal and we got to chat again and enjoy each others company.
18th day- Last day in America! PACKING, more PACKING and SHOVING and buying more suitcases for PACKING....LOL. We went shopping in the morning and then came home and got dressed for the pool. We got to go swimming for about an hour 1/2 before going to the airport...but of course we had to have a little scare when little Hannah slipped off the step and the lifeguard had to jump in and get her....I was shaking half to death and Helen was nice and calm....man what a way to end there vacation....LOL
On our way home from the pool my girls fell asleep and and The Coppins had to say goodbye.
Me and Joey escorted them to the airport for some last minute hugs and pics!
You could now say the Coppins are apart of the family! Joey calls them our cousins....it is better than telling people we let a family stay with us that we meet online....LOL...but as downsyn clearly states...extra chromosome...extra family!
We love our downsyn family.
Enjoy the show!

Hello there, I'm Stephanie, mother of Megan, and this is our new blog. This is a companion to Megan's website, a place where I can share my thoughts.

The posts below were transferred from my old myspace blog.

SHINE

Sometimes I see you stuck

For such a long time

A daily nothing new

Pretend I don't mind

With lists of things you'll never do

Until somehow you do

And you do -- you do -- you shine

The days and months and years,

they run together

Is it just one day? Or is this forever?

You've taught me in your lifetime

More than I'd learned in mine

And you do, you do, you shine

Shine Shine Shine Shine Shine

Shine your light on me

Shine Shine Shine Shine Shine

everyone will see

Shine Shine Shine Shine Shine

I'm so glad you are mine

And you'll shine in your own time

Well, maybe I'm too close to see you clearly

Or is it now my role to simply believe?

You're just one of those mysteries

That may never be solved in time

But you do -- you do -- you shine

And Sammy will do what Sammy will do when Sammy is ready to do it

And Trevor will do what Trevor will do when Trevor is ready to do it

And Lucy will do what Lucy will do when Lucy is ready to do it

And they'll do it in their own time

Yeah, they'll Shine Shine Shine Shine Shine

Shine your light on me

Shine Shine Shine Shine Shine

And everyone will see

Shine Shine Shine Shine Shine

I'm so glad you are mine

And you'll shine, and you shine

I need a new camera.

One that takes really good video, with a background light so inside shots aren't too dark and also zooms....but also takes nice pictures (7+ megapixels)....and fits in my pocket.

Tell me which cameras you all have and which one you would recommend to me.

So this year we decided to do something a little different for Easter. Instead of buying presents and candy (which we don't need) we decided to take a mini vacation. This place is seriously the coolest place in the world or so it seems.

Check it out.
http://www.greatwolf.com/
They have a bunch all over the US.

The last day we will be visiting the Crayola Factory for a day of coloring!
We have heard great things about this place too.

Check it out
http://www.crayola.com/factory/

SO WHAT IS EVERYONE ELSE DOING FOR EASTER?
ANYONE HAVE ANY GOOD RITUALS?
WHAT DO YOU BUY FOR YOUR KIDS?

In case you didn't get your copy of the book Gifts, I wanted to share with you my portion which falls under, "The Gift of Perspective." This is the way the story was written before the final edit. To read the final edit, you can purchase your copy of Gifts from Woodbine House.

She had been plotting this big move for weeks. Positioning her foot this way, grabbing the cushion that way, grunting loudly, using every muscle in her body, all to no avail. But today is different, and she knows it. This time, her arm is just long enough, her tiptoes just high enough, her shoulders just strong enough for success. Reaching, grasping, pulling, sliding…and she's done it! Megan beams at me from her new throne. She has claimed her rightful position on the couch, and is now the reigning Queen of the Remote!

Her denim-colored eyes shine with accomplishment as she hits the slow motion button and watches Elmo and the other characters inching along the screen. This is power! Not only has she conquered gravity, but she also has control of the TV just like mom, dad and big brother Joey. She has just shown her little sister that she is THE BOSS, being first to master this task. It is a day to celebrate in the Bissol Household. I go to the baby book and jot down a little note, "September 17, 2005. Megan was able to get herself up on the couch today, 1 year, 10 months and 9 days old."

We seem to celebrate occasions like these more often now. Just three days prior she stood by herself for 4 seconds, which was another first. I left her playing in the living room while I moved along the laundry. When I returned, I picked up my cup of coffee and sipped on it while I watched Megan from around the corner. She was admiring her sister's pacifier and decided to nab it from her mouth. Without noticing her own accomplishment, she stood there hands free. I slowly counted…1…2…3…4 as she plopped her bottom to the ground and continued to pretend she was the baby sucking on the pacifier. She hadn't even noticed that she reached another milestone.

Megan continued down this road of independence and also started to get from a stand from the floor. This came shortly before her second birthday. She would slowly rise from the floor with a little wobble. She held her arms out to steady herself much like an Olympic Diver getting ready for their gold medal attempt. She completed her gold medal achievement on October 3, 2005, "1 year 10 months, 25 days old."

I seem to know every little detail of these events and others because Megan has to work a bit harder and try a bit longer than most children to accomplish them. Special dates and milestones seem to come to me easily when asked by a doctor or a friend, because Megan's progress is full of extra meaning. Her sheer determination to master new skills gives me continual cause to celebrate. And to think, on November 8, 2003 our family was at an emotional standstill. Sitting in the recovery room of the hospital listing in our minds all the things she wasn't going to accomplish. We never spoke the words out loud but the looks, the tears and the silence spoke volumes of what our minds were thinking. Doctors and nurses were coming and going apologizing to us and consoling us. Social workers were coming in and out giving us pamphlets on Down Syndrome and our local "Mental Retardation Department." We kept hearing that "these kids" are delayed, they won't talk till much older and walking may not happen till age 3 to 5. Your child will inevitably be slow. That is a hard word to swallow these days.

My favorite thing to do when I was little was participating in field day at school. I loved racing the other kids, playing kick ball and tug of war. These activities were something I was good at. I played basketball and softball all my life. Running up and down the courts and hitting balls being pitched at me at 70 mph. All the kids who weren't fast enough or who couldn't hit the pitches didn't make the teams. I never wanted my own children not to be "fast" enough to make a team.

In a way, my fears came true: Megan's development in some areas has been slower than average. But I was wrong to have thought that this was something to be sad about. She has made us, her family, view the world in slow motion rather than the fast forward that many other people seem to be on—and this is a wonderful thing.

Megan has taught me to notice and appreciate things I never paid attention to before. I took the little things for granted. The subtlety and ease other children were able to use in picking up a Cheerio. Did you know there was a name for this? Pincering is now a commonly used word in my vocabulary. Megan practiced first on casino chips and putting them into a piggy bank. After months of this, she was able to reward herself with feeding herself a Cheerio. I was very proud of her. Other seemingly simple things that have come easily for my other children were playing on their knees. Seems simple enough but a task Megan was unwilling to take. She fought this tooth and nail. Tricking her was never an option. She always seemed to know when we wanted her to do some physical work. We would set up all her toys and try placing her on her knees but she would scream and show her disapproval. But the persistence of her therapists reigned supreme and she conquered this as well. Playing on her knees without being forced…check!

Seeing these subtle accomplishments that added up to a major event helps me to appreciate the little things in others now. When someone goes out of their way to hold open a door or someone helps an elder carry a heavy bag to their car. I see these things. I seem to notice it all the time. I even noticed that I wake up every morning not just because it is time to rise but because my children are seconds from awaking themselves. I notice the colors in my flowering Dog Wood that is in my front yard. It was the reason I bought my home. I used to complain that the flowers weren't in bloom long enough during the Spring, now I relish in those few weeks of gorgeous flowers, taking pictures and showing my children the beauty of nature. Life is not so much a conveyor belt anymore with me just going through the motions. I do have the innate ability to enjoy the little things, the way my bed sheets feel after a long day, the smell of a fresh load of clean laundry , the taste of the perfect cup of coffee, the sight of my kids giggling with each other and the touch of my husband when he comes in from a long day at the office.

Slow motion is an amazing feature. It enables us to take in details that otherwise fly past our eyes. It helps us to examine each and every tiny step which adds up to an amazing accomplishment. It shows us the beauty and grace hiding in everyday happenings. Cable and satellite companies are trying to offer this at a price so that TV audiences can savor every moment of their favorite programs. Thanks to Megan, we get it for free.

My baby is 10.  I cannot believe how fast time goes by.
I am so lucky to have been blessed with a son like Joey...he has truly enriched my life and made it better than I could have ever imagined.
He has kept me on track and his father and I are so proud of all of his accomplishments.

WE LOVE YOU JOEY!!!!!!

Megan has really been taking off with her speech lately.  She speaks in sometimes full sentences.  Some of her words are easier for "mommy" to understand than others, but I don't mind being her inturpreter.
Here is a video from not too long ago that shows off Megan's speech

This was posted on a Down Syndrome listserve...I had to share. It is so powerful.

"I want to tell you a quick story before I start. I was walking through hallways, not minding my own business, listening to the conversations around me. As I passed the front door on my way to my English classroom, I heard the dialogue between two friends nearby. For reasons of privacy, I would rather not give away their race or gender. So the one girl leans to the other, pointing to the back of a young man washing the glass panes of the front door, and says, "Oh my gaw! I think it is so cute that our school brings in the black kids from around the district to wash our windows!" The other girl looked up, widened her slanted Asian eyes and called to
the window washer, easily loud enough for him to hear, "Hey, Negro! you missed a spot!" The young man did not turn around. The first girl smiled a bland smile that all white girls - hell, all white people - have and walked on. A group of Mexicans stood by and laughed that high pitch laugh that all of them have. So now it's your turn. What do you think the black window washer did? What would you do in that situation? Do you think he turned and calmly explained the fallacies of racism and showed the girls the error of their way? That's the one thing that makes racism, or any discrimination, less powerful in my mind. No matter how biased or bigoted a comment or action may be, the guy can turn around and explain why racism is wrong and, if worst comes to worst, punch em in the face. Discrimination against those who can defend themselves, obviously, cannot survive. What would be far worse is if
we discriminated against those who cannot defend themselves. What then, could be worse than racism? Look around you and thank God that we don't live in a world that discriminates and despises those who cannot defend themselves. Thank God that everyone of us in this room, in this school hates racism and sexism and by that logic discrimination in general. Thank God that every one in this institution is dedicated to the ideal of mutual respect and love for our fellow human beings. Then pinch yourself for living in a dream. Then pinch the hypocrites sitting next to you. Then pinch the hypocrite that is you. Pinch yourself once for each time you have looked at one of your fellow human beings with a mental handicap and laughed. Pinch yourself for each and every time you denounced discrimination only to turn and hate those around you without the ability to defend themselves, the only ones around you without the ability to defend themselves. Pinch yourself for each time you have
called someone else a "the r-word". If you have been wondering about my opening story, I'll tell you that it didn't happen, not as I described it. Can you guess what I changed? No, it wasn't the focused hate on one person, and no it wasn't the slanted Asian eyes or cookie cutter features white people have or that shrill Hispanic hyena laugh (yeah, it hurts when people make assumptions about your person and use them against you doesn't it?). The girl didn't say "hey Negro." There was no black person. It was a mentally handicapped boy washing the windows. It was "Hey
the r-word." I removed the word the r-word. I removed the word that destroys the dignity of our most innocent. I removed the single most hateful word in the entire English language.I don't understand why we use the word; I don't think I ever will. In such an era of political correctness, why is it that the r-word is still ok? Why do we allow it? Why don't we stop using the word? Maybe students can't handle stopping- I hope that offends you students, it was meant to - but I don't think the adults, here can either. Students, look at your teacher, look at every member of this faculty. I am willing to bet that every one of them would throw a fit if they heard the word faggot or the n-word - hell the word Negro used in their classroom. But how many of them would raise a finger against the word the r-word? How many of them have? Teachers, feel free to raise your hand or call attention to yourself through some other means if you have. That's what I thought. Clearly, this obviously
isn't a problem contained within our age group. So why am I doing this? Why do I risk being misunderstood and resented by this school's student body and staff? Because I know how much you can learn from people, all people, even - no, not even,
especially - the mentally handicapped. I know this because every morning I wake up and I come downstairs and I sit across from my sister, quietly eating her cheerio's. And as I sit down she sets her spoon down on the table and she looks at me, her strawberry blonde hair hanging over her freckled face almost completely hides the
question mark shaped scar above her ear from her brain surgery two Christmases ago. She looks at me and she smiles. She has a beautiful smile; it lights up her face. Her two front teeth are faintly stained from the years of intense epilepsy medication but I don't notice that anymore. I lean over to her and say, "Good
morning, Olivia." She stares at me for a moment and says quickly, "Good morning, Soeren," and goes back to her cheerio's. I sit there for a minute, thinking about what to say. "What are you going to do at school today, Olivia?" She looks up again. "Gonna see Mista Bee!" she replies loudly, hugging herself slightly and
looking up. Mr. B. is her gym teacher and perhaps her favorite man outside of our family on the entire planet and Olivia is thoroughly convinced that she will be having gym class every day of the week. I like to view it as wishful thinking. She finishes her cheerio's and grabs her favorite blue backpack and waits for her bus driver, Miss Debbie, who, like clockwork, arrives at our house at exactly 7'o'clock each morning. She gives me a quick hug goodbye and runs excitedly to the bus, ecstatic for another day of school. And I watch the bus disappear around the turn and I can't help but remember the jokes. The short bus. The the r-word rocket. No matter what she does, no matter how much she loves those around her, she will always be the butt of some immature kid's joke. She will always be the butt of some mature kid's joke. She will always be the butt of some "adult"'s joke. By no fault of her own, she will spend her entire life being stared at and judged. Despite the fact that she will never hate, never judge, never make fun of, never hurt, she will
never be accepted. That's why I'm doing this. I'm doing this because I don't think you understand how much you hurt others when you hate. And maybe you don't realize that you hate. But that's what is; your pre-emptive dismissal of them, your dehumanization of them, your mockery of them, it's nothing but another form of hate.
It's more hateful than racism, more hateful than sexism, more hateful than anything. I'm doing this so that each and every one of you, student or teacher, thinks before the next time you use the word "the r-word", before the next time you shrug off someone else's use of the word "the r-word". Think of the people you hurt, both the
mentally handicapped and those who love them. If you have to, think of my sister. Think about how she can find more happiness in the blowing of a bubble and watching it float away than most of will in our entire lives. Think about how she will always love everyone unconditionally. Think about how she will never hate. Then think
about which one of you is "retarded". Maybe this has become more of an issue today because society is changing, slowly, to be sure, but changing nonetheless. The mentally handicapped aren't being locked in their family's basement anymore.
The mentally handicapped aren't rotting like criminals in institutions. Our fellow human beings are walking among us, attending school with us, entering the work force with us, asking for nothing but acceptance, giving nothing but love. As we become more accepting and less hateful, more and more handicapped individuals will finally be able to participate in the society that has shunned them for so long. You will see more of them working in places you go, at Dominicks, at Jewel, at Wal-Mart. Someday, I hope more than anything, one of these people that you see will be my sister. I want to leave you with one last thought. I didn't ask to have a mentally handicapped sister. She didn't choose to be mentally handicapped. But I wouldn't trade it for anything. I have learned infinitely more from her simple words and love than I have from any classroom of "higher education". I only hope that, one-day, each of you will open your hearts enough to experience true unconditional love, because that is all any of them want to give. I hope that, someday, someone will love you as much as Olivia loves me. I hope that, someday, you will love somebody as much as I love her. I love you, Olivia.

Soeren Palumbo