Monday, December 31, 2012

been there...done that. Welcome home!


Sitting here near 7pm on New Years. Watching Dora the Explorer and watching my baby girl stumble through the room. Walking as best she can in the only place she feels safe enough to do so.

Although she looks like she's doing a pretty good job.....and she is for a child with Rett Syndrome.. I'm sure you can see the camera jump a few times. Our living room seems to be the only place that she will stand and walk without assistance. I'd ask her why but she cannot answer me. Why does one leg stomp out every few steps? I wonder if she has problems with feeling or if it's that "spark" not connecting. How scary it must be. Or maybe she's used to it. They talk about our girls not having great equilibrium. I think of her trapped in a body that does almost nothing she wants it to and being brave enough to walk and dance around the room. Id be scared. She seems so determined to go go go and do do do...even when her body wont let her. If I videoed her 24 hours a day then cut out all the moments she dove off the couch to run to the TV...even though she cannot stand on her own without being helped up and balanced....or the times she hits the gate with her head so she can get to me in the kitchen....or walks up to the fridge and says."uh, uh, uh" while holding her hand to her mouth. Is she thirsty? Is she hungry? She cannot coordinate chewing and swallowing or take more than a wetting of the mouth without choking. But she wants it. You'd see that. Dozens of times a day.

Someone asked me the other day If I thought she remembered being normal. I can't tell you how much I hate those questions. Of course she doesn't. Do you remember when you were two? Or maybe she does....Being that she has had to hear me tell of her losing her skills...how smart...how capable. The hundreds of stories of what she could do and then always how it ended. Does she think I don't love her as much as when she was perfect? Does she know how perfect I think she is. No more stories of the thief in the night. Not in front of her...ever

So I sit here thinking...making resolutions...thinking about the year that was and the year to come. 2012 was one of the bad years..probably the worse since 2006. I had 2 dear friends lose their daughters and one (older) in her twenties(older in her twenties) oh the lump in my throat...lose her battle..the example of what was in there. I think about what they have gone through and wonder when it will be my turn and how I will do it. If I can do it. I pray that I can live everyday like that day will never come and not obsess with every cough, every seizure until I drive myself mad.

 There were difficulties with my son. The loss of my husbands job, his subsequent 8 days in the hospital...7 in ICU and the near 40 grand in medical bills. I think of the new man he has become and pray that he continues on his positive journey. I thank God for bringing the people into our lives this year that were my rock. I have found there are people who are true and good and that there are people that pretend to be while rolling their eyes at your misfortune. Even if it was something small, it mattered to me. Thank you Irene,Sheri,Silvia,Kelley,Deena,Joan,Heather,Terri,Erika,Mitch, Jennifer, Carey and all of Georges former dance students for everything. Whether it was a ride...a car seat..lunch..a meal...or just caring enough and letting us know. We don't see it as often as you'd think.

So tonight as I watch my child stomp through the room as best she can I think of how thankful I am for the positive. I make a promise to myself for more things than I care to share. I will believe...I will hope...I will have faith.

Any one person or one thing that takes that away will be gone...done without. Ive had 6 years of mourning. 6 years of worry. 6 years of death.6 years of negativity. Whew. That was four 6's and not 3.

I have to get back to some kind of normal so....

Facebook will be a informative and keeping in touch thing and not my only escape...right back into the world I'm trapped in.

My cell phone will be for emergencies and not my life line

I will get out

WE WILL take turns

I will read....books

I will care for and believe in what is right and right front of me...right now

I will not live my life being jealous of the people that are living theirs

That starts now

Welcome home Terri

Friday, December 28, 2012

Attack of the butt!!!

My daughter has a magic butt. I'm sure of it. It took me years to figure out but she is now busted and I am more enlightened to this Rett Syndrome crap. No pun intended.

For a while now....or at least since she got her g-tube and fundo now that I think back, my daughter has been a tooter. A Hi my name is Abby and I'm a tooter type tooter. Hi Abby..Toot toot goes the crowd.

It is so bad that I try to mask it when out in public. If we are in church I either put a towel under her or sit her on my lap so we don’t get the ricochet noise that comes from butt to vinyl. The people at church have come accustomed to it. I am nice enough to sit us clear in the back where I can wave off the fumes or silently spray with a travel size bottle of bath perfume.

Restaurants are near impossible. The poor people at nearby tables can force themselves not to stare at Pocahontas while she woo woo woo woo's every second until I break out my phone or a book for her to look at. When I don’t prepare for the choo choo toot toot train to pull into the station they are mortified I’m sure, as they change tables, trying not to look at us.

I can remember preparing to give a Special Needs/Rett Syndrome talk to an elementary school in which Abby was going to sit in the front with me. This was several years ago. I can remember telling Kelly Butler that I wasn't nervous but my biggest fear was that she'd be blasting ass the whole time I had a microphone on and embarrass us both to death. But she didn't, not once. Not in front of all those kids. Thought I had dodged a big ole butt bullet there. I can remember breathing out, looking at the sky and saying, “Thank you."

Over the years Abby's has acquired many skills I have then taken her to the doctor for only for him to tell me, “She does it because she can. Rett Children can do so little when they find something they can do they have fun with it or use it as a way to express themselves."

Oh great. My daughter can swallow air like her brother does to burp and shoot it out the other end...at will.

It reminds me of when her Neurotypical brother was 2. He farted one time, very loudly during dinner and looked at us very sweetly and said,"Scuse me. I burp my butt."

The whole table just about died only to have him burp a few minutes later and say,"Oh! I fart my mouth!"

Go ahead...I'll give you a minute.....

You OK??

So at church this Sunday night they were having their Christmas Cantata. The choir was in rare form at the head of the church. Thank goodness because those of us sitting in the back were about to die. She was loud and she was stinky. Our older friends that travel were there and had us sitting with them. I know they think I feed her dead bodies then pump her full of air before church when they are there. I am not kidding she could have accompanied the band on percussion back there.

Today after therapy I decided we were going home and taking a nap, whether she liked it or not. After 2 hours of trying to breath in the Dutch oven that had become my bedroom I gave up and took her downstairs to sit on the potty. I mean she had obviously had to poop or already had.

Nope.

Guess who stopped the instant we got downstairs and turned on Dora.

Yah your right. Princess Tootie.

I just kind of cocked my head and thought NO WAY! So I waited a few minutes then turned off the TV. Toot toot. I turned it back on for 15 minutes. Princess Pretty Pretty. Turn it off. Toot Toot.

Boy is her brother going to be pissed that she has this skill. I’m sure he'd give anything for it. I think I would too. When he comes in the kitchen and leaves me a present I could just fire one right back. Forget water guns! It would so be on!

So this is how my beautiful little angel expresses boredom, anxiety and just plain I don’t want to be hereness.

Get me out of here or I will gas this place out.

She burps her butt.

I'm so proud.



How are things going?

I have to admit I missed this post when it first came out. Yesterday I saw a couple of reponses to it and had to contact Marta for permission to repost and have her be a guest blogger.
You can find out more about Marta, Mike and Caroline Lily by visiting:

 http://ourcarolinelily.blogspot.com/

"How are things going?"

I never really know how to answer that question without burdening people with what is essentially a conversation stopper.
The truth? Some things get easier. Or maybe we just get used to dealing with them. Other things seem to get tougher as Caroline gets older. Another truth? The sorrow never fully goes away. It comes in waves. I've just learned to tuck those feelings away where nobody can see them. I especially never want Caroline to sense that her condition makes us sad.

I'm not the same person I was before I became acquainted with Rett Syndrome. I don't have the same dreams. I don't have the same patience or energy. My perspective and outlook have certainly changed, perhaps for the better and perhaps for the worse too. Strangely though, I like the "new" me. I'm more honest, more authentic ...and so are my relationships.

We want to give Caroline the very best life. At the same time, we're coping with a reality that is emotionally devastating and physically exhausting. And we're up against this reality every single day. There's no escaping it. This is not just a "phase" in our lives. It is our life. There are a lot of complex pieces to juggle. There are stresses most parents will never have to deal with or think about. A painful example is my constant awareness of Caroline's shortened lifespan. I try to use that information to celebrate her life, but I still think it's unfair and unnatural to know that I will outlive my child.
Mike and I often feel like we are struggling to just make it through this life in one piece at the end. I hate admitting that.

Given the challenges we continually face on a regular basis, we do our best to avoid additional stress that could easily tip us over the edge. We often end up having to cancel plans when Caroline catches even the slightest cold. Coughing often results in vomiting because Caroline has acid reflux, sensory issues, and weak muscles. We've had enough experience with messy vomiting sessions to want to avoid them outside our home. Trips are tough too. After a few taxing experiences this past year, we've made the decision to avoid long car rides and short overnight trips. Being in a car for a few hours exacerbates Caroline's involuntary movements. These movements become more frequent and spastic. They also continue into the night. They keep her from falling and staying asleep. A sleepless night, in turn, messes with our own ability to recover from an already exhausting week.

What keeps us going? Mike and I have each other's backs. Humor is a huge part of our lives too. We also rely on our parents a lot. We have a great support system. Nursing assistance is absolutely crucial. Connecting to other Rett families is a lifeline. Working out feels like therapy. My career is also important to me--it's one of the few links I still have to my "old" self. 
Despite Rett Syndrome and all that it has stolen from us, when I watch Mike and Caroline, I still feel like I hit the jackpot. The good moments definitely trump the difficult ones.


Thursday, December 20, 2012

Social Anxiety? I think not!

OK somebody is busted. I know sometimes I have wrote about it here and sometimes I just vent n Facebook about my Abby's anxiety
.
I love my girl but she makes it absolutely impossible for me to take her anywhere the last few years so I have stopped. I figured if she was that scared of people,lights and noise it just wasn't fair to her to force her into situations that obviously terrified her. I have stopped taking her to church because there were too many people, although we do belong to a very small church. I don't take her to the store or even the library.

Yesterday I arrived early at the school to pick her up for therapy. They were having an assembly and I could hear it clear from the office. I was mortified that they could possibly have her in there as loud as it was.

This is what I walked into:

Yah her little spoiled butt can pretty much knock it off with the get me out of here. It's just too much for me routine. So gonna kick her butt!

Monday, December 17, 2012

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.

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.



Wednesday, December 12, 2012

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!!!!!!!

Wednesday, December 5, 2012

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. 
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. 

Tuesday, December 4, 2012

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!