It is with great sadness that I have to report the passing of my cousin James in Ireland. May his soul be on God's right-hand side. (That's the title of the blog in Irish.) It was almost a year ago that we lost my Granpa Jim. I am so glad that Grandpa Jim got to meet his Irish cousins a few years ago. Here's a picture of the two of them from that visit. I am planning on taking my parents over for a visit this summer. My prayers are with all of James' family members. May old wounds be healed.

My dad posted more photos of Grandpa's trip to Ireland on my website. Hickey Family Trip to Ireland 1998 The second photo here is a picture of James Hickey, James Hickey and James Hickey (Nora's dad). OK, so we Irish do not have much creativity in coming up with new names, but that's OK, I am so lucky to be named after the Margarets. I need to give a shout out to Auntie Margaret in DC. Dad says that you have had some dizzy spells recently. I get those too, but it's usually because my dad has spun me around and around and around. Get better soon, I've been thinking about you a lot. Your teddy bear sits in my rocking chair.

We've had a fun week at the house. I don't like to sleep during full moons. With all the snow on the ground, the moonlight makes it bright as the sun. My parents seemed to have other ideas though, so I relented and let them sleep some. Mama has started to learn how to knit. She says that she is making me a scarf, I was kinda hoping for a flamenco dress and little bells on my ankles. Dad has just about finished the family photo project. I can't believe some of the outfits you guys used to wear. They are so wacky they would be considered cool today. Here's a little preview. This picture must be from the early 1970's of my dad with my Uncle Tom. I can't believe my dad used to have so much hair!

Mama listened to my call to political arms from a few blogs ago. She is changing jobs to work on politics for the union. She will help stop Governor Pataki's attacks on medicaid. I will be too old for early intervention therapy soon, but the angels who come after me deserve to play and learn from Misty, Pam, Mindy Patti and all the other great therapists. I read that Missouri Governor Blunt has announced plans to gut medicaid programs there. As far as recruiting us to move back to Missouri, he is definitely off program.

Please keep James in your thoughts and prayers. Maureen, Peg and Tom, I am sending all my angel hugs your way.



God bless you and keep you James. Say hi to Grandpa Jim for me. Maggie out.

Greetings from the winter wonderland that is Ithaca. We got about a foot of snow last night, luckily Dad did not try and take me out in the sled today. Dad did get some good exercise shoveling the driveway and front porch. All the snow brought lots of birds to the feeders, including a little hawk that dad called a sharp-shinned hawk. (I don't think birds have shins, so Dad must be wrong about that.) It came by looking for a snack at our feeders several times today. The hawk was not interested in the seed and suet, but gave chase to all the little birds hanging out at the feeders. Sometimes I wonder whether Dad puts out the bird feeders to attract all the pretty birds or bait for the hawks. The first time the hawk came to visit at breakfast all the birds got away, but at lunch time he caught a cardinal. It was pretty cool to watch. Here's a picture of the hawk.

Mama and Dad are a little shocked and scared at how quickly I am mastering this mobility thing. Mama was in the living room this afternoon painting a bench and a stool for me. Boy was she surprised when she discovered that I had pushed myself over to help her with all the painting.

Pam has been helping me use my arms to push up. Here we are working together. On Thursdays, Pam comes over to our house just before lunch time, and Misty comes over right after lunch. Last Thursday Mindy came too, so I was pretty pooped by the time me and Misty worked on the teeter board. In fact, I teetered over and fell asleep before I hit the ground. What can I say. Dad had given me a bottle of eggnog for lunch and threatened to take me out sledding if I didn't take a nap.

I have been doing fun things with my Mom and Dad inside this weekend. Mama got me this cool wagon that has seats and cup holders and everything. They pulled me around the house in it and we had a great time. Mama also took me to music class this weekend where I sang several solos. The other kids sing the itsy-bitsy spider, but I sing Ave Maria.

Me and Dad have been riding on my platform swing. He pushes while I stand up and steer. We haven't crashed into anything yet, but he keeps on asking to steer. We'll see, maybe when he masters pulling the sled I'll let him try to steer the swing.

My cousin Brianna and her Dad went over to London to find a flat and a school for her and Dillon for the next two years. I can't wait to go over and visit them and everyone in Ireland. I've made Brianna and Dillon a few pages on my website to keep us informed of their adventures over there. Hickey-Williams Home Page I'll let you all know when I post pictures of their new flat.

Well, that's all the news from up here. Don't be too shy to post your own comments on my blog page. I love getting comments. I know some of you have told me that you are not getting the pictures in the blog updates I send out via e-mail. Some e-mail programs make you download the blog update as a file in order to see the pictures. Otherwise just surf over to my blog site on the web. Maggie's Blog Site

Stay warm, drive safe and don't let my Dad pull you in a sled. Maggie out.

Well I have decided that the sedentary lifestyle is for the birds and our dog Chita. My parents were a bit freaked out to find that I had gotten out of bed all by myself the other morning. Like I got time to wait for them to come get me?!?! Here I am sitting in my room after they caught me. I was on my way to the fridge to fix up my morning eggnog. My Dad keeps the house so cold I don't understand why he should be surprised to find me wedged up against the floor board heaters in the middle of the night. Anyway, I have not mastered crawling yet, but I can still move around and keep my parents on their toes. I have been working hard with Misty and Pam. Leaning over and bracing myself up with a hand on the ground is no problem. They have also showed me how to hold myself up on my hands and knees. Soon Mom and Dad won't be able to keep up with me.

Mama got me a new sled. Dad pulled me around in it this weekend, but I am not convinced he has a license to operate a sled, at least not with passangers. At first, it was all going fine. Dad was running, laughing, screaming "Maggie watch me!!!", and pulling me around, until he tried to take a turn going warp 10. Needless to say, the sled turned over and I face planted on the cold tundra. Mom got it all on video, so I will be able to blackmail him for the next few years. Meanwhile I'm sending Dad to defensive sled pulling school. Next time I think I will have Chita pull the sled.

Mom and Dad were a bit worried about me after I pulled all those all-nighters in Amherst. I have to admit, I did feel a bit manic and my arms and legs would shake a bit too much for me to relax. Other parents of angels helped them understand that I might need a little more help relaxing my nervous system. (You'd be extra nervous living around my Dad, getting tossed up in the air and pulled on a sled!) Mom and Dad thought I might be having seizures so they have started me on a new medication called Clonazepam. It is the most mild seizure medication and very commonly used to help angels. I actually started sleeping through the night, although my parents still wake up at the usual times to check on me. I am also taking proper naps again. Next month we are going to Boston to see a special doctor who knows all about angels. I hope that I will also see my friend Nico out there too!

My room is looking cooler everyday. I got frogs climbing over the top of my bed and a big leaf as a canopy. Dad put in some cool new nite lights and glow-in-the-dark stars on the ceiling. It was good thing Mama watched all those home design shows at Grandma Pat's house. All the adults who come over to visit wish they had a room as cool as mine! Mama made a cool growth chart for me. Now they can look back and remember the time when I was small and cuddly, before I knew how to move around and spread chaos. Mama is a great artist. I think she should open her own craft store. Maybe Aunt Yvonne can sell her work on e-bay!

Mama got a great gym set for the house with the help of Grandma Sue. We put it in the sun room, but we can bring it outside when the weather warms up again. I am slowly taking over every room of the house. I am not sure where Mom and Dad are going to sleep when I get my hot tub installed in their bedroom. The new indoor gym set has a slide and a swing. I like to play inside. I sit and reach my hands through all the holes, or stand up and play with my toys on the shelf. It is way cool. Thanks Mama and Grandma Sue.

I have been asking Mom and Dad for a handheld computer to keep track of my busy schedule and all the contact information for our growing movement of angelic anarchists. I don't think they know how to use a computer, but Mama made me a really beuatiful schedule board instead. Now I can go over my schedule with them everyday so they can keep up with my busy activities. I noticed they haven't made an "Eggnog Time" card yet so I need to talk to them about that.

Stay warm - drink eggnog.
Maggie out.

Well I have tried hold off on my first political rant of the year until after the coronation and all the inaugural balls, but the news this week has just been more than I can take. Sorry, but you won't find me smiling in this blog update.

First, a school in Baltimore has a policy that in case of fire, the kids in wheelchairs get left at the top of the stairwell until someone can come back for them. The saddest thing is that the administrators got everyone to obey that stupid plan when the school had a fire recently. (Click here to read the news article) The kids made it out OK, but I'll be in anger management classes for the next year after reading that story.

As if that little bit of news weren't bad enough for one week, I heard on NPR that the President's supporters are paying $15,000 to reserve fur coats for the inaugural balls. That way, their own coats won't get all mussed up going through all the security. For those of us who can't make it to the ball, our consolation prize is the elimination of medicaid funded health care coverage for hundreds of thousands of U.S. citizens. What's up with that?

In Georgia, The Atlanta Journal Constitution reported that Governor Sonny Purdue was not going through with drastic cuts in the state run medicaid program, just a $120 million reduction in the program that covers low-income and disabled Georgians.

Tennessee Governor Phil Bredesen announced this week that the state was dropping 323,000 people from the State's health care program. Meanwhile the governor's mansion is getting a $10 million renovation. Still, I don't blame all this on people like Sonny and Phil, without the tax cuts that are defunding the federal medicaid programs, how could folks afford to rent those fur coats for the inauguration? A January 9th article in the New York Times sheds some light on why all this is happening, and why we need to get ready for a much bigger fight.

"As Gov. George E. Pataki struggles to confront New York's skyrocketing Medicaid costs, his advisers are arguing that he should embrace the Bush administration's efforts to establish new limits on the federal Medicaid program as a means of revamping the state's program.

The president is considering widespread changes to the Medicaid system, including giving states fixed sums of money, or block grants, instead of basing Medicaid payments on actual health costs and enrollment. It is a prospect that has alarmed governors throughout the nation."

Some politicians like to make it sound like cuts in Medicaid programs are only effecting poor people who should go out and get jobs with health care. The fact is that most medicaid spending goes to take care of our grandparents. Cutting eligibility for poor and disabled people does little to address the health care crisis, but it goes a long way to making our society less compassionate. We need a national health care system that provides health care for all, my brother and sister angels, my grandparents, and all the hard-working families that have no insurance.

The only good news coming out this week is that I have jumped through the second hoop in getting signed up for medicaid benefits myself. I just hope that fella in the White House doesn't need to spend the funding for my health care on an extra platter of cavier at the ball. We'll see. Thanks for listening to my rant.
Maggie out. [Read More!]

Well here we are in 2005. The Chinese call it the year of the Rooster, I call it the year of anarchy. I resolve to unite more angels and create more anarchy this year. Mama says I am already off to a good start on that resolution.

Mom and I spent the past week at college together. We went to the University of Massachusetts in Amherst. Dad had to go to Philadelphia, so it was just the two of us until Mom called in reinforcements. Since we were doing the college thing, I tried to help Mama pull all-nighters. The first night I was only able to stay up until 5 AM. I was really hoping to have that special memory of a mother and daugher staying up talking and laughing until the sun comes up. Since I didn't make it the first night, I tried to stay up again the next night. In fact, I tried as best I could to stay up every night of the week. Here's a picture of me after hitting the eggnog bars with Mom.

I started feeling a little loopy by the third night. Dad heard that we were having so much fun without him that he left his conference and took a train up to join us. But by then I was pretty pooped out and Mom and Dad outnumbered me so I've started sleeping again. I hear that Mom has a week long training next month, so it will be just me and Dad. Hah, he'll get his turn!

I have started playing a new game with Mom and Dad. I mouth a few consonents like "M" and "Na" and "Ba". Mama and Dad start babbling like mad. I can get them to do it over and over, it's a hoot! I was so glad to see my therapists after such a long break over the holidays. They are the best. Dad is still arguing with the people from the State over my medicaid benefits. At this rate he says I should be all set by the time I turn 65.

My picture is now up on the Angelman Syndrome Foundation website. (www.angelman.org) Look in the Photos category. I have been hearing from other new Angels so I am hoping that we can soon organize Local 3 of the International Union of Angelic Anarchists. We resolve to make 2005 the year of anarchy, and love, and laughter, oh and eggnog ice cream too!

Happy New Year!
The Magster