Life with Emma

HAPPY BIRTHDAY, EMMA!

2011-11-23T08:40:00.000-08:00

Today we celebrate Emma's 8th birthday. Eight years ago, the joy of Emma's birth knew no limits. The entire family welcomed this beautiful little blue-eyed redhead with open arms and boundless love. Little did we know that Emma would become such a focal point in our lives; that this tiny child would teach us so much.

Over the past eight years, we have learned of a syndrome called Angelman, been introduced to the world of special education and IEPs, fought for services to improve the quality of Emma's life, services that no family should have to fight for, and met some truly incredible people along the way.

Throughout all of this, Emma has been a constant. She overlooks our shortcomings and loves us with all her being. She takes on challenges with a sense of determination and strength I have yet to acquire. Emma is tenacious, bright, michevious but most of all loving.

On this celebration of Emma's birth, I thank God for the blessing he bestowed on our family when he brought Emma into our lives.

Love you bunches, little girl!

Grandma

JOY!

2010-09-03T10:57:00.000-07:00

I moved Grandma to tears today. I walked independently during therapy, something I've done in the past, but quite some time ago. Mind you, this was not just a few steps but rather a long stroll around the therapy room, down a hallway, outside and around the playground and back to the therapy room. I figure why do things in a small way when you can get such great reactions for going big!

Big shouts out to Julie, Vicki, George & Myra, my former and current CCS OTs and PTs - they make great things possible. Grandma is so grateful for all their efforts!

My philosophy is shoot for the sun, the moon and the stars, they are all within your reach in one form or another! My family has always known wonderful things are within my grasp and I'm here to prove them right. My path may be a little different than the route most kids take and it may take me a little longer to reach my goals but with love and a little bit of help, I'm going to be successful!

Here's a video Grandma took using her phone...this is the last part of my walk. Enjoy!

Big hugs & kisses to all,

Emma

PROTECTIVE GRANDMA

2010-08-20T17:39:00.000-07:00

I appreciate all who read and comment on Life with Emma. Having said that, I am now carefully monitoring any comments and making the decision as to whether or not a comment can be published or considered spam. I am not happy about having to do this, but there are folks in this world who choose to be unkind and/or use this as a forum for their own agendas. I will not allow such comments to be directed toward any member of my family. I welcome your comments, HOWEVER, they must be in English. Thank you for your ongoing support! Hugs to all. Emma's Grandma

AND LIFE GOES ON

2010-08-12T11:40:00.000-07:00

Jacob turns one on Saturday! Happy birthday, little brother! Who knows, maybe I'll decide to take a short walk like I did last year. Just need to remind everyone that I'm the big sister! Great things planned for the birthday celebration...jolly jump, pinata and lots of family.

Cousin Myles made his long awaiting arrival on April 25th. Yet another boy for me to contend with. He's a cute little guy who gives me great big smiles and Aunt Jenny and Uncle Jerry seem to like him, so I guess we'll keep him around. It helps that he's a redhead just like me! Bryce, Myles' big brother, came to visit so I was the only girl surrounded by a sea of boys...geez!

School will be starting soon. I said good-bye to my teachers and friends at the end of the school year 'cuz I'll be transferring to a school closer to home. Grandma had a hard time telling people good-bye but I'm looking forward to making new friends, working with my new teacher and aides, and getting to know all my new therapists. This should be an exciting year!

Aunt Jackie's and Luke's wedding is just a few months away. Silly Grandma is starting to move into panic mode! Grandpa keeps telling her to relax, but she refuses to listen. We're anxiously awaiting the arrival of my gown and flower basket...then the fun begins. Can you imagine an active, almost seven-year old girl holding still for dress alterations?! My dress is long but Grandma wants it hemmed to tea length; she thinks I might trip in a long gown. Who knows, I may surprise her and do just fine with a long dress! Will let you know how things work out!

Gotta go...mischief calls & there are little boys to keep in line! Hugs to all! XOXO, Emma

COUNTING DOWN

2010-04-22T11:48:00.000-07:00

Jacob and I are anxiously awaiting the arrival of our cousin Myles, but I don't think we're nearly as excited as Aunt Jenny and Uncle Jerry! Although Myles tried making an early escape which was thwarted (thanks to me!), it appears he's now decided to stay in his cozy compartment until the very last minute. The family is hoping he has a change of heart and decides to make his appearance this weekend since everyone will be off work, but one never knows with these little kids.

Since I am the oldest, I, of course, will do my best to school Myles in much the same manner I've used with Jacob...always give the old folks a beguiling smile when you're about to get into mischief, be sure you announce you're up to something by giving a little giggle, and most of all, apologize with great big hugs.

BIG SIS!

2009-08-22T18:46:00.000-07:00

I became a big sister on August 14th! The rest of the family and I welcomed my baby brother, Jacob Alexander, into the world at 5:49 a little over a week ago. Now I have someone to help while I spread the fun and mayhem! Hmmm, wonder how often I'll be able to let folks know "Jacob did it!" Probably won't work too often since my mischievious giggle always gives me away!

Not to be outdone by the arrival of a new brother, I also decided it was time to take a few independent steps on my own while Mom was in delivery. What better way to remind folks who's actually in charge? Look out world I'm ready to take you on now!

Grandma is writing this for me since I'm on "holiday." Aunt Jenny and Uncle Jerry decided I needed an "only child" weekend and we're hanging out in Disneyland! Whoohoo! There's talk of going on Star Tours...I'll let you know how that one goes. As always I'm having a blast with Auntie and Uncle; they know how to treat a girl!

Here's a brief video of one of my first walk! Check out the look on Uncle Jerry's face...he was so proud of me! Enjoy!!

A LOSS

2009-07-16T15:02:00.000-07:00

Emma lost a truly special person on July 5th. GGK, Great-grandmother Karayan (her daddy's nana), passed away while at home.

GGK had a special place in her heart for Emma. She treasured the time she spent with Emma, always referring to her as "our little angel" even before Emma's diagnosis of Angelman Syndrome.

GGK will be missed for her unwavering love for her family, her generous nature, and her positive outlook on life.

Soar with the angels...we will meet again.

SCHOOL DAZE & OTHER STUFF

2008-08-20T17:31:00.000-07:00

Hi, All,

It's been a while since my scribe has added to my page, but it's been pretty quiet here in my little kingdom. Boy oh boy, is that changing! I started kindergarten today...yep, I'm one of the big kids now!

I'm riding the bus again this year, but now I get to spend even more time with my bus buddies cuz the ride is much longer than last year. Grandma, the worrier, had mentioned the nasty "s" word to Principal Kathi and others at my transition IEP and requested someone ride along to make sure I don't have any problems. So now I have a riding partner, Manual. He and I are going to be best friends. Grandma warned him that I might grab for arms, ears, or hair if I think I'm being ignored or want to give a hug. Who does she think she is giving away all of my secrets?! Come on, Grandma, how can I flirt with a guy if you're going to give away all of my tricks?

My new teacher is named Laurie. She and I got along famously, but then again what else would you expect? Grandma does keep telling me I'm a real charmer and I hate to disappoint her. First impressions are important so I made sure to dazzle Laurie and staff with my sparkling personality!

You can check out my pictures at www.dropshots.com/bethesda54

And now, here's Grandma....

Not all in life is sunshine and rainbows. Fortunately for now, Emma only knows that she is loved and cared for. My hope is Emma will never know any other way of life, but the frequently harsh realities of life make me believe otherwise. There are still those in this world who think it's acceptable to make jokes at the expense of others. Such is the case with a new movie release, "Tropic Thunder". While it is socially unacceptable to make fun of others based on race, religion, or ethnicity, it is still considered funny if "jokes" are made at the expense of the developmentally disabled or mentally ill. Mr. Stiller will argue the comments made in the movie are being taken out of context by those who protest the use of terms such as "full retard". Perhaps Mr. Stiller has never been on the receiving end of cruel jokes, taunts or jeers, perhaps Mr. Stiller has failed to realize that certain phrases from his movie will soon become an integral part of the day to day venacular for those who are unable to come up with a quick quip of their own. Somehow I think Mr. Stiller is very much aware of how much power the "key phrases" from the movie will have. Why else would merchandise with offense quotes like "Full Retard" even be considered? In my opinion, Mr. Stiller is just as oafish as the characters he claims to be ridiculing in his movie...he is definitely just as insensitve.

I've taken the liberty of adding an open letter from Dave Hinsburger, blogger extrodinaire. Take some time and check out his blog, Chewing the Fat...it's well written and provides a perspective on life that is unique. Hat's off to Mr. Hinsburger, I think his letter says it all.

Dave Hinsburger's letter to Ben Stiller (http://davehingsburger.blogspot.com/2008/08/r-rated.htmlR RatedAn Open Letter to Mr. Stiller,

Dear Mr. Stiller,

You hurt me today. Personally. I am writing to protest your action against me, I am writing to hold you accountable. Not that I imagine you care, but I wish to explain myself to you.This afternoon I stopped at a local mall to do some shopping, I wanted to pick up a birthday gift or two for a friend. After shopping I went to the food court to have lunch. Food courts are wonderful places. One can dine on Mexican whilst one's partner dines on Thai - they are places of such diversity. Around me were representatives from many nations, colours and creeds. Around me were those with varying faces, varying languages and varying abilities. I sat in my wheelchair, across the way from me was a young mother with a child with Down Syndrome, over there was a college kid dripping big words from the corner of his mouth. We were an ecclectic bunch, we were.A skinny girl and a chunky boy with long hair arrived alongside a geeky friend. They were clearly in a playful mood, suddenly one said to the other, "There you go, you went full retard." My heart stopped. It was the first time I'd heard the phrase spoken in common parlance. The first time, the phrase you wrote, you created, you crafted, was spoken in my presence. I cannot tell you how much that phrase hurt me. I cannot describe to you the look of pain on the face of the woman who's child sat with her. A child, thankfully, not yet old enough to understand the meanness of that statement. A child simple by age who will grow complex with disability.You hurt me a second time today, Mr. Stiller. I am writing to tell you, to hold you responsible. I arrived home and saw on a website that it is now possible to buy tee shirts with the phrase 'full retard' on it. You are responsible for this Mr. Stiller, you wrote those words, you chose those words, you went public with those words. It is you, and only you, who must bear the consequences for your actions.There are parents, Mr. Stiller, who have to send their children into schools in only a few weeks. Hallways have never been welcoming places to those with differences - even so, those hallways are now even more dangerous than they were when they were abandoned for summer play. A new phrase will tickle the fancy of the privileged and scar the selves of the different. 'Full retard,' this is your creation. One you are no doubt proud of.But I read interviews with you on the web. Interviews that explain that I 'don't get it' that the humour is about shallow, self absorbed actors, not about people with disabilities. Mr. Stiller, I submit to you that your reaction, your denial, in the face of reasonable protest, reasonable requests and reasonable explaination could only be the reaction of a shallow, self absorbed actor. A person that cannot see beyond his need to express to the need of others to be safe. A person that cannot understand protest as anything other than hysterics.I tried to find a way to contact you, to write you personally, to tell you of the pain I felt today, of the pain I fear tomorrow, and of the concerns of millions of parents, millions of people with intellectual disabilities. I wanted to tell you that you may make a few people laugh for a few hours but you will undoubtably cause many more hours of pain and many more tears to be shed. But as I could find no way to contact you, I resort to this, my blog. I hope that if there are truly only six degrees of separation - that those six between you and I - will get this to you.Years ago, Mr. Stiller, I met a man with Down Syndrome who was in his late 30's. I met with him because he would no longer leave his house. He abandoned his work (yes, he held a job), he abandoned his friends (yes, he had friends), he abandoned everything he loved and enjoyed in the community. Why? Because he had decided that the world was a cruel place. That he no longer wanted to walk the mean streets. That he never wanted to be called a 'tard again. He had had enough. He would stay in and stay safe.That was the world before you came into it. It was already bad. But now it is worse. Much worse.Tropic Thunder will make a lot of money, I'm sure. Box office and momentary popularity is the goal, is it not? It is to shallow, self absorbed actors, so I assume it is to you as well.

Godspeed,Dave Hingsburger

A GOOD WEEK!

2008-07-26T14:27:00.000-07:00

This past week was the best! I got to see my dad, I met a new friend and his mom, and went for a long walk with Grandma and Grandpa.

Daddy came to visit me all the way from Phoenix last weekend. I spent almost the entire weekend with him...how cool is that?! We visited my GGK, went to dinner with friends, went to Uncle Nick's baseball game but the best part of all was just spending time with my dad! I miss him, but I know he loves me bunches and I love him! Daddy, be sure to thank Nana & Papa for the cute shirts and purse. Love you!

On Monday, I made a new friend. PJ and his mom, Cindy, were visiting family in our area and came by to meet me and my family. I tried impressing PJ with my superhero moves, like headlocks, big hugs, and my favorite, ear tugs, but Grandma kept telling me I had to play nice. Didn't she know I was just trying to show him I could hang with the boys? The woman just doesn't get it! Grandma said PJ wasn't feeling well, so I needed to be gentle. Hmmm, gonna need some extra courses in gentle I think. Anyway, it was good to meet PJ and Cindy. They were headed down to San Diego and then home. I sure hope PJ started feeling better so he could enjoy the rest of the trip. PJ & Cindy, stop by whenever you're in the area...maybe we can have a re-match!

Aunt Jenny and Aunt Jackie went to a running clinic Wednesday evening. Grandma and Grandpa decided to take me along and walk while J & J ran. It was a nice two mile trek for us and I got to watch all the people run by huffing and puffing. I was in my stroller so I was feeling no pain! It was cool, there were little rabbits and squirrels to watch and I got some fresh air...not to mention the much needed exercise for the grandparents!

The rest of the week was pretty calm...or as calm as it can be when you have me looking for mischief! I'll have to give some thought to next week's adventures. Until then, keep smiling...I do!

Hugs & kisses!

BTW, if you want to check out pics of this week, go to www.dropshots.com/bethesda54 and look at July 21!

HAPPY BIRTHDAY, GRANDPA!!

2008-07-14T15:43:00.000-07:00

Oh boy, we get to celebrate Grandpa's birthday tonight. Grandma is making lasagna, one of his favorites, with yummy garlic bread and salad. It's good that Grandpa doesn't mind me getting a little messy before I give him hugs and kisses, cuz I'll definitely be saucy tonight!!

Aunt Jenny and Uncle Jerry have a real surprise for him....Devil Dogs all the way from the East Coast. Grandpa is always talking about growing up in Maine drinking Moxie and eating Devil Dogs, so they thought it would be the perfect "birthday cake" for him. Won't he be surprised!

I decided to celebrate a little early and had Mom and Grandma take me to the dentist...figured they needed an outing and I needed some extra attention. They're worried about me grinding my teeth together to the point that I occasionally make my mouth bleed, so worry wart Grandma made a dentist appointment this morning. Wouldn't you know, the dentist likes me so much, he managed to open a spot for me this afternoon! Anyway, he put on his funny glasses, put a mirror in my mouth (I tried to chew on it, but he's really fast!), and said my teeth look good. I decided to let them know I was ready to leave and tried to wiggle out of Mom's lap. Don't these women know I don't like holding my mouth open! Good thing the dentist didn't have flavored gloves or I might have had a "tasty treat"! Guess Grandma will be watching now to make sure my teeth are ok. I know she does it cuz she loves me so much, so I occasionally mouth items just to make sure she has something to watch. :-)

Megan and Lil, I'm sending you special Emma thoughts. I want to hear of great improvements...we girls have got to stick together.

Hugs to all!

Emma & Grandpa

HAPPY FATHER'S DAY

2008-06-15T20:39:00.001-07:00

This is me and Grandpa. I didn't get to spend much time today cuz he had to work. That's ok though, because the time I spend with him is always special!

Aunt Becky and Grandma got to spend the afternoon and early evening with their daddy, my Great-Grandpa. Family gatherings are always fun. We get to laugh, eat good food, and, of course, I get lots of attention.

To all you dads out there, and one in particular, Angel hugs & kisses. Love, Emma

A BLUE RIBBON DAY!

2008-06-14T11:57:00.001-07:00

Giddyup! Today I participated in my second horse show at Above & Beyond Ordinary. What a beautiful day...the sun was shining, my family was in attendance, and I won the blue ribbon! I usually ride Cindy, but my buddy, Benjie was on her today so I got to ride Diva for the first time ever. We must have made a good team, cuz everyone was amazed at how well we did. Grandma hasn't seen me ride since last December and she was so surprised at how well I'm doing. Now I hang onto the reins, and tap my horse with them when I'm ready to move forward. I even took the rings off the post when asked...didn't quite make it when I had to put the ring back on, but I gave it a good try! The picture at the bottom of the page is of me, my Mom, and Jan, the lady who runs Above & Beyond...she's one of my favorite people in the world! Thanks for all your help Jan...love you! If you'd like to see more of my pictures, check out www.dropshots.com/bethesda54

Happy trails!! Hugs & kisses,
Emma

GRADUATION DAY

2008-06-11T20:32:00.000-07:00

I graduated from pre-school today!!! School won't end until Friday, but the teachers couldn't wait to share all of our accomplishments until then. The ceremony started with the class processional, but I decided I didn't need one of my shoes as I was making my way into the front of the room. My speech therapist, Barbara, insisted I walk in wearing both shoes so we stopped to put my shoe back on...can't blame a girl for trying. I didn't particularly care for my cap either so that didn't make it through the ceremony. Hey, I've got to win some of the battles!

Our principal played a special tune for us on her kazoo...Pomp & Circumstance...pretty cool! We sang a few songs and then each of us received our Certificate of Promotion. We all received "best of ..." awards too; mine was "Gives the best hugs". But what else would you expect?

Kisses to all! Emma

HAPPY BIRTHDAY, AUNT JACKIE!!!

2008-06-08T19:17:00.001-07:00

Aunt Jackie is 26 today....seems awfully old to me but it's ok cuz she's pretty cool. Aunt Jackie, Grandma and I went to Solvang Friday. I graduate from Pre-K on Wednesday and Grandma was looking for the "perfect" dress. I liked the trip because I got one of the wonderful Danish cookies when we were through shopping! :-)

Saturday was therapy riding. I'm preparing for my big horse show next Saturday so I'm paying extra attention to Jan, my instructor. Cindy, "my" horse, wasn't in a very good mood and stepped on one of my sidewalkers feet. Guess we all have our off days! Grandma is already planning on lots of pictures and video so I'll try to make sure she updates my page next weekend!

All the family came over today to celebrate Auntie's birthday. Yummy veggies, hot dogs, cake and ice cream. And I got to spend time with all my special people. Of course my favorite part of the day was "helping" Aunt Jackie open her gifts...knew she couldn't do it without me.

Big Angel hugs & kisses to all!!

Emma