Newton-Love Wins

 These are not my words. I was and am so emotional on this situation that I have chosen for the most part to try and bury my head in the sand so to speak. I have strong feelings and strong emotions and don't choose to fight with anyone over who does or doesn't have rights started with the brutal murders of innocent women and children.

 I can't think about it. I can't look at it. I look only at headlines and scan pics of these people alive. The tributes. The flashes I get in my head of what must have been paralyze me.

This blog entry is from some I respect immensely and consider a friend and I LOVE how he put his feelings into words.

Posted from:Kablooey

 

Love Wins. My Thoughts on the Sandy Hook Shooting.

Posted on December 17, 2012

Words have been and will be spoken. Words have been and will be written. But, they all seem… minuscule…meaningless. Don’t get me wrong. They aren’t meaningless. Healing needs to occur. And words…they are what we know. So, here I write.
I’ve read many of the words of written this weekend. Many have been beautiful.
Dr. Natasha Burgert urges us to see the light. I like that. As a Christian, I respond to the idea of light and hope and love.
But, maybe you need action. Dr. Claire McCarthy urges us to act. I like that, too. As a doctor, I respond to the idea of improving people’s lives through public policy.
But, maybe you are a parent and are confused about what to tell your children about this horrific event. Dr. Melissa Arca urges us to communicate. I like that. Children are acutely aware of what is going on in their environment. Honesty is always the best policy. If they sense abnormal behavior, it’s best to converse with them now.
I read nbcnews.com, nytimes.com, and cnn.com. I constantly checked my Facebook account for updates.*
*We are in a new media age…social media has become a source of news!
No matter how much I read, however, the words didn’t seem like enough. 
The world can be confusing. The world can be painful. Problems can seem insurmountable. All weekend my emotions were running high.
But, in the confusion, through the pain, while I was searching for answers, and fighting to hold back my emotions, I played with my son. And love won.
Love wins.
Love always wins.
The principal who lunged attempting to stop the madman – Love Wins.
The teacher who comforted her scared pupils by telling them that she loved them and to wait for the “good guys” – Love Wins.
The first responders who risked their lives by placing themselves in a risky, unknown situation – Love Wins.
The community who mourns with one another – Love Wins.
Dr. Burgert who urges us to see the light, Dr. McCarthy who urges us to act, Dr. Arca who urges us to communicate – Love Wins.
So, how does this look in my life from this day on?
My partner and I are going to tell Emmaus that we love him everyday of his life. We are going to kiss him everyday that we are together.
We are going to show him what it means to be family. He will forever know that his daddies love each other and that we are there to protect him and keep him safe.
We are going to protect him from violent video games, TV shows, cartoons, movies. The fact is that those forms of media harm children. It is our responsibility as his parents to protect my son from those ill effects.
We are going to keep him away from guns. A gun is made to kill – an inherently violent act. A gun teaches violence. Our son will have nothing to do with that.*
*If you own a gun or take your child hunting – please do not misunderstand me. This is not a judgement on you or your choice. You have every right to do that. Every parent chooses differently for their family. If you choose that, however, I urge you to know and understand gun safety.
We are going to teach him to respect his teachers. Teachers are wonderful instruments of knowledge and grace. He will show them love and honor.
We are going to read to him so hopefully he develops a deep thirst to learn. Only in a search for knowledge can someone truly learn about him/her-self.
Sympathy and empathy are powerful tools towards justice and peace. We are going to teach him to stand up for the bullied and forgotten, no matter the consequences. And, I imagine as the son of gay dads he will, unfortunately, have an acute awareness of what it will be like to be bullied. So, we are going to teach him to stand up for himself.
Look, don’t get me wrong. There will always be evil in the world. There will always be pain. But, with love, evil and pain will never win. Love will always win. Always. I promise.
Try it…go love today. Then come back here and tell us what happens.

A Special Santa

Last week we had a very special visit with Santa. Poor Santa. It was put on by the Liberty Special Needs Support Group. Princess Kick Your Butt was in rare form. I am thinking at this point there are no smiles that will get her off the naughty list!

Hi little girl. What would you like for Christmas?

I think I'll kick your butt!

Now now we must be nice to Santa

My favorite one. I think Jenn must have snapped 50 or more to get one or two of her playing nice

If I cant snatch your beard how bout I just clock your from the side?

OK forget you then

Santa is scared. Abby is contemplating her next move

Gotcha!

That's it. Go see your Mom. A stocking full of coal for you!

Awww Santa I was just messing

Psyche! Pile Driver!

Finger to the eye!

Poor poor Santa. It would totally ruin your rap to throw a pretty special kid to the reindeer

Boy kid I tell you. If your Mom doesn't get a good pic quick, SHE is going on the naughty list!

I'm sorry Santa. I was just excited. I love ya!

Winner and still champion.....Abby Marie Vejrosta!!!!!!!

Time-by Stefanie Gutierrez

I am reposting a blog written by my friend Stefanie Gutierrez. Her and her husband lost their daughter Anna four months ago today. The strength and emotion this woman shows if overpowering. I know many have you have kept them in your prayers and I ask you to continue doing so. Her situation is something we all live in fear of every day. The knowledge that one of us has to live this life now is.....read for yourself:

Time

Time. Time moves on, so quickly. The days go by, and tomorrow I stare in the face of four months without the physical presence of Anna in my life. The dream that I keep waiting to wake up from becomes more of my reality, and it is scary, lonely, surreal, to navigate through life without her.

Many times I do not know what to do with myself. I keep busy, I love my work and it has been a wonderful distraction. I have put jogging back on the calendar. I make plans to keep me out of the house, which may explain the moving boxes still lining the downstairs of the new apartment. But I have to keep going. When I stop, it is difficult. To start again, I ask, "Is this what Anna would want for me?" Many times, I look at Gabe's face. I kiss his forehead. It bring me peace. I could only kiss Anna's forehead near the end because of the equipment and the tubes and the masks; they were all in the way. I feel his forehead and I close my eyes and it is the closest I am able to get to kissing her. They have the same soft skin. I look into his eyes and it is the closest I am able to get to looking into her eyes. They have the same shape, the same sparkle, their souls shine through. Pure. Wise. Deep.

We all talk about Anna. Sometimes the words are saturated with sadness. Other times, full of hearty laughter as we share a favorite memory. A roller coaster. I long for her, always. Longing. It adequately describes my feelings for her. I long for her touch. I love her. I cannot have her.

This week, we bought a real Christmas tree; the house is filled with pine. It is a lovely thing to come home to. Gabe also asked for a mini-tree for his room. He decorated it with mini-lights, his special ornaments, and placed it beside the picture he has of him and Anna on his shelf. Next to the Franciscan cross. Next to the Snow White figurine because that was the first princess movie they enjoyed together. On the other side of that is the Nativity he built and put up on his own this year without any help from mom or dad.

On Gabe's tree, I found he had placed one of Anna's ornaments in the center. The Arielle ornament, from the Little Mermaid. He picked it because, at the end, the Little Mermaid had superseded Beauty and the Beast as her favorite movie. She loved Prince Eric, and when we would tease her about it, she would laugh and giggle. A little crush on the prince, I would say, and she would give me that famous smile.

A few weeks ago, on Nov. 8th, Manny and I co-chaired the 4th Annual Reverse Rett Gala in New York City. If you ask me why we stuck with it, I will tell you: staying home and away from it would have been more difficult than attending. There is a double loss I have suffered. The first and foremost, my daughter. The second has been the loss of our daily support system and life as we knew it.

Caretakers who took such wonderful care of not only Anna but our family (and me) are no longer there, filling my house with their love. While we stay in touch, it will never be the same. I do not come home to Anna, or Taryn, or Ruby, or Lilia. Lord how I miss them. Their presence. Their love. The laughter. The joy. The friendship. 

Doctors who became extended family we do not see like we used to. The texts, the e-mails, the calls, the shared concerns; they helped us carry the Cross. I want to see them. In my crazy mind, I want to load up the wheelchair and pack the heavy diaper bag and I want to drive to Montefiore and head to the fourth floor and see them. I even want to sign in to the registrants desk and pay the co-pay. Just to see them. The routine of it all. What had become normal. I feel displaced. Dropped into a life that the rest of the world seemingly lives. Work, eat, sleep, exercise, pray, play. No Rett Syndrome and all that comes with it? Is this what this is? Normal? I am so not used to this. 

The Rett community. Especially Monica, Rachel, Erika, Jeff and Sara, Kristy and Roger, the GP2C friends. We are forever bonded. We will move beyond Rett world. But we will not move beyond our friends and extended family. It does not serve us well to do that.

A month or so before the gala, Monica asked if I would speak. After a few days of thinking about what I would say, I said yes. Below are two videos. The first is the video shown at the gala. There is a beautiful, touching tribute to our Anna at the end. I tend to think my technical skills are pretty good, but I could not figure out how to download the video from RSRT and upload it to Blogger. Below is the link. 

RSRT's Video Shown in LA, NYC, and London

The second video is for our friends and family who could not be at the gala. Forgive the shakes, our dear buddy Hannah recorded it via iPhone. Apologies it has taken almost a month for me to get this together. Revisiting it is difficult. 

Support Brians Fight against Rett Syndrome for our girls.

This is a repost from another RettMoms blog. I was toughed by Brian from the beginning. What he has done and is willing to do is just beyond comprehension, even for me.

What makes him so special? From experience I can tell you that as much info as we put out. As much as we advocate it seems that people just don't care or that it is just easier to think.."Oh that is just too bad. So sad."

New people that come into your life almost always wasn't to fund raise immediately. Whether it be for your girl or for research. They all go away. Nearly every funding for research comes from the families. I'm sure people have good intentions but they almost never follow through either for research or privately for our girls. The newness wears off and they just fade away. Not all but most.


This man is the exception and I hope your read this story and are inspired by him. He had no connection to Rett. No by family or friends. He was touched one day by a chance encounter. Please donate to his cause...our cause

This is incredible

A Hero!

3 years ago at Caribou Coffee in Rochester a man named Brian Dalton walked in, ordered a coffee and happened to see a Girl Power 2 Cure flower.  My mom had gone to several coffee shops earlier that month and set up Garden's of Hope.  We had hoped to raise a decent amount of money with this quick and easy fundraiser but we were about to be pleasantly surprised.  

Brian was intrigued when he read about Rett Syndrome and the Girl Power 2 Cure organization, it was good timing considering his 8th grade class was looking for an organization to benefit from a fundraiser they were doing at our local Barnes and Nobel Book Store.  

Brian emailed Ingrid Harding (founder of Girl Power 2 Cure) and Ingrid got us in contact with Brian.  A few months later Annie and I were welcomed into Brian's 8th grade class and were completely blown away with the amount of kindness, support and love we were shown.  The classroom was decked out in Girl Power flowers, even the kids faces were tattooed with flowers.  Annie was given gifts and then we watched the most beautiful, heartwarming video that several of the kids made about Annie and her fight with Rett.  We were blessed!

The kids each made projects that they displayed at Barnes and Nobel Bookstore a few weeks later.  During the time that they were displayed the community was invited to come in, hear the kids present their projects and then 20% of all proceeds that night were given to Girl Power 2 Cure.  

That was 3 years ago, this event has become annual.  The kids do more and more each year and raise more and more money.  Last year Brian was able to bring in Fox 2 News and we were able to tell thousands about our little known disease, Rett Syndrome.  
Eight graders raising money for Rett Syndrome research - Fox 2 News Headlines

As if all this wasn't enough Brian has blown us away again.  This year he is not only continuing the Barnes and Nobel tradition but he is taking it a step further and competing in the Escape from Alcatraz  triathlon.  

Brian says "As far as as triathlons go, it doesn't get any bigger or more challenging that the Escape From Alcatraz race. The race is also symbolic of how the girls are in essence a prisoner in their own bodies. Their minds are free, but their bodies are broken. So, to help out, I'm going to put myself and my body through one of the most challenging races I could find."  

Here is the explanation of the triathlon:  "The 2013 Escape from Alcatraz Triathlon features a 1.5-mile swim through frigid waters from Alcatraz Island to the shores of the St. Francis Yacht Club, a grueling 18-mile bike ride, and a demanding 8-mile run through the trails of the Golden Gate Recreational Area. Set against the natural beauty of San Francisco, this thrilling triathlon is a virtual postcard of the City by the Bay."  YIKES!  

To think that just 3 years ago Brian didn't know anything about Annie or Rett Syndrome and today he was working selflessly to help fund a cure is such a blessing.  Brian is a full time teacher and has 4 children of his own and still found the time to help our cause.  What an inspiration he is to his family and his students and a Hero to our girls suffering from Rett Syndrome!  

Will you help our hero and support him as he sacrifices so much for Annie and all the girls suffering with Rett Syndrome?  Make a donation HERE and leave a message to let Brian know what an inspiration he is!

Sleep Study, Rett Syndrome and my girl

This week we had another sleep study for Abby. Since her Rett Episodes of tremors and jerks almost always happen as she is awakening we need to find out what is going on. Or at least the doctors do. Personally I think it is all Rett Syndrome and kind of it is what it is. Sleep disturbances come with Rett Syndrome but Abby's can be pretty rough.

This is my pretty girl while we were waiting to be admitted. She loves the hospital. Little weirdo.

Love this face. She looks like,"Say what?" She has Disney Princess eyes. Just adore her

Being hooked up to wires,straps,transmitters,EKG's and she's having a good time

  

Seriously? Hour later and she is still happy with tape and glue all over her head and face

                                         Oh Look a gauze hat and wire pony tail. Still having a ball

      A wire down between her eyes and taped down and into her nose. Is she complaining? Nope

 

OK seriously now. Tubes up her nose and running into her mouth and she's giving me the cheesey face. I have the best kid in the entire world

It took a while for her to fall asleep. More because she wasn't in her own room I think but shorter than at home where she can roam and play in her padded bed. I think her sleep was pretty normal for her. They tested how many times she wakes. Whether or not she stops breathing. Leg movements. Heart rates and o2 levels.

I did not sleep at all. I am pretty sure I was just starting to drift when they came in with their wakey wakey routine.

The tech said it would take up to 6 weeks to get results and suggestions but she was pretty sure Abby has Restless Leg Syndrome and that is what keeps her awake. I immediately asked if her leg sensors went off pretty hard 4 times and she woke up. They couldn't fathom how I knew that. They had come in 4 times shining lights on her or messing with wires. 4 wakes, 4 startles, 4 tremors. Rett Syndrome. Nonetheless I had to take her to the lab to get poked for iron levels.

Hoping someone that knows Abby or anything about Rett Syndrome is the one who reads the report. I hate to think of putting her on another med that will make no difference for something that can't be fixed. Not fair to her. She cant be medicated better. Not for some things.

I blame her father for her up all night routine. I'm pretty sure he's part vampire.

I will keep you updated!

Terri

Rett Syndrome, Testing and Abby

Dear Abby's TEAM, My name is Kate Ahern. I have a master's of science in intensive special education and am both a practicing special educator and assistive technology specialist. My focus is on Augmentative and Alternative Communication and of particular interest to me is Rett Syndrome and augmentative communication. I have reviewed multiple tapes of Abby using various methods of augmentative communication and demonstrating knowledge of basic concepts. It is clear to me that Abby retains a higher level of motor ability than many girls and women with Rett Syndrome. Although she does not have the ability to use her hands to point or select she does, clearly, have the ability to use her eyes and her nose for communication. She is able to use eyegaze controlled speech generating devices with either her eyes through eye gaze tracking or her nose, by touching her nose to the screen. Apraxia is perhaps the most disabling part of Rett Syndrome. Essentially apraxia is a problem with intentional motor movements. The cruelty of apraxia is the more intent the person has the harder it is for her to move with deliberation. This means we must take particular care in how we ask girls with Rett Syndrome to communicate. We must be careful to let them use the skills that work best for them, in Abby's case her eyes and her nose. We also must be sure not to fall into the trap of testing and asking questions. Like any child the girl with Rett Syndrome wants to please. Abby wants to please. But when we test her and ask her questions, especially without much "wait time" we put them in an impossible situation - they want to please but their apraxia makes that next to impossible. In the past the assumed route to success in apraxia like this was so much drill and practice that the motor movement became automatic and the apraxia had less of an effect. We know, through research, that this does not work in Rett Sydrome. Instead we must use motivation to overcome apraxia, create such excitement that the apraxia is overcome with the sheer energy of the girl. We can do this with animated interaction, music, highly preferred topics of conversation or items and by using our abilities as educators to "read" what will excite the girl. We can also do this by asking "cloze-style"/open ended questions instead of multiple choice style questions. We also can do this by giving the girls a variety of communicative intents in a speech generating device. Instead of only requests and choices (which cause anxiety in that the girl might make the wrong choice) we can add jokes, comments, questions and other less anxiety provoking things. As educators and therapists I know you want what is best for Abby, for her to reach her highest potential. Please contact me so I can help in any way with Abby. I am happy to converse by email, review video tape and in other ways assist. Thank you, Kate Ahern, M.S.Ed. Ahern TEC; Haverhill, MA

Abby is 8!

 Abby turned 8 in late September. I still hardly believe she is as old as her peers. She is so much smaller than them. And I must say, better dressed. I have always figured since she cant run and play like other children she can look magnificent so I spoil her with clothes and pretties.

 This year Abby was a Fairy for her birthday. We have always had a theme and she has always worn  a costume. Thank goodness Halloween stuff goes on the shelves so early.

 Isn't she cute? These wings lasted long enough for me to take three pics

 Love this cake. So pretty.

 Miss Lyss

 Abby approves

 True Love. Abby with her Bubba

 Me and my girl

 Reading a card

 Bubba got the gift. I got the kisses

 She is a total Mommy to this doll

 Look at her. She was so thrilled

 Pretty clothes. More kisses for Momma

 Girlfriend is styling

 TuTus!!!

 Alyssa cheesin at her Mom

 MAn I love this kid

 Family

 Abby's caregiver and Momma

 My boy and me

 Her shirt from Uncle Owen and Aunt Kelley

 Abby's new baby.

Thank you to all who came and showed your love for my girl. We love you all so much!