Almost ready

Today someone asked me why I haven't been blogging right as I was taking pics to add to a blog post.
I told you all a while ago that I was tired of myself being a negative Nelly and I want this to be Abby's place and not my look at how crazy Abby's Mom is place. You guys know how poor me I can be or psycho Mom and believe me, I delete about half of what I right when I'm mad or sad so you never even see it.
So, an explanation...or a couple of explanations and my next blog will be back to business as usual.

Life has been difficult here. Abby is unaffected. Ive made sure of that.

George is still unemployed. We are going on 5 months now. He has applied everywhere. I don't know what else to do. I thought we were poor when he worked. At this point I would think we were rolling in it if we got the same income back. We eat out of food pantries and rarely have the bare necessities. We cant even run the errands we would like to save the gas. If we have to go to the same area two days in a row I put it off as to not to waste gas. We have had to take ourselves...me and George down to one meal a day most days in order to not go without food. One the bright side, that weight Ive been trying to lose doesnt seem to be much of an issue anymore.

We lost another caregiver. Its been about 6 weeks now. I'm exhausted. Probably more than I have ever been. I haven't been able to get around to hiring a new one out of exhaustion and frustration
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If  you remember our van was stolen. We did have a 14 year old van donated and we are thankful. Abby is getting so heavy that trying to load her in the smaller van is a chore with her weight and length.

My mother passed away 6 weeks ago. We were estranged and had been off and on since I was 17 and completely for at least 13 years. There is some guilt that comes with that. I also have this inner need to make sure my brother is taken care of. I just don't know how. She passed without a will which leaves me as her next of kin. I am trying to do the morally right thing and make sure everything goes to my brother but the courts wont let it be that easy. I really toss and turn over this one. Neither one of us can afford a lawyer. I only want to sign my rights away. It is what is right and what she would have wanted.

There are several things we need for Abby and I have no means to get them and it makes me sick to my stomach.Im sure it will all work out eventually. Im just getting kind of fed up with that whole one day dream.

On the other hand I do have people that are helping by donating food and possibly one therapy. I will know more on that next week.

I do have good news to share and that will come in the next few posts.

Bare with me.

I'm trying.

Abby's still moving and grooving.

Last night we were sitting watching Dora as her majesty commands and i grabbed my phone as she was up walking,dancing and trying to play with her cause and effect music toys. M thinking I may have to get her a flatter laugh and learn music toy before she breaks her hand on that stick up sunny part, but she loves the light up keyboard so much! Because she has no purposeful hand use she can only bat at the toys but she does love them!

I grabbed the phone because I wanted to show the therapist,teachers, etc that Abby CAN walk. I don't know if it is her condition or her flat out onry spoiledness but no one else can get her to walk but me. How do I do it? I leave her to be. As soon as you put hands on her to help or steady her she pulls her abortion protester routing and hangs on you or drops.

Yes she is wobbly. Yes she has a huge,stiff gait but she CAN walk...if you'd just let her.

The circles she does is her dancing.....

TEAM ANNA BANANA! IN MEMORY OF

This year my dear friends Stefanie and Manny will be running in the Disney Half Marathon without the physical presence of their dear Anna who lost her battle with Rett Syndrome on September 5th 2012 at the age of 4. Please read and contribute in memory of this incredible little girl. Thank you

Once again, Team Anna Banana is on the run to raise money for a cure for Rett Syndrome.

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For Manny and me, it is very clear to us that Anna would not have us suddenly walk away from the Rett community and leave behind friends who we love and care so much about.
Despite what we have been through, in suffering the worse loss, and experiencing daily unimaginable pain as we navigate through our life without the physical presence of our beloved daughter, it does not sit well with us to segregate ourselves from moms, dads, and siblings of girls who continue to live so heroically with Rett.

We committed to the Disney Princess Half Marathon before Anna gained her wings on September 5th, 2012, at the age of 4, from complications from Rett Syndrome. Quitting was never in our vocabulary before, nor was it ever an acceptable option in our fight for Anna. In her memory, we will see through this commitment.
Team Anna Banana includes more than Manny, Stefanie & Gabriel. It is our group of family and friends who so selflessly rallied around us and supported Anna.
For Anna, who appeared "normal" at birth, everything changed right before her first birthday. She could no longer sit on her own, and could not walk or talk. She received all of her nutrition through a feeding tube, and then later, a jejunostomy tube. Anna was unable to enjoy the many simple pleasures we take part in every day.
Despite her daily struggles, Anna communicated through eye gaze and was a little princess inside; her favorite movies were "The Little Mermaid" and "Beauty and the Beast." She slept with her Belle doll everynight. She was a fiesty and funny gal who also loved dressing up and going to school and being with her friends.
For every step it takes us to complete 13.1 miles, we will think of Anna's Rett sisters, who would give anything to take even one. It brings us some consolable peace to think of Anna walking and running all over Heaven. Last year when we ran the 1/2 for the first time, Anna was in her wheelchair. This year, we know she will be running with us in spirit.
Researchers have found that Rett Syndrome is reversible in mice, and we know a cure is out there. It is not a matter of IF, but a matter of WHEN.
We thank you for your tax-deductible donation to help support us in finding a cure for Rett Syndrome!

To donate to Team Anna Banana please click HERE

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

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.

I was so touched by this and it stirred up many emotions. It is strange...we parents always talk about how we can tell the same story so many times and I was just thinking the other day that I wish people would stop asking how I am.....
I will blog my response in a few days...hopefully without hurting too many people's feelings. 

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
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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!