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Hold me.

Just hold me.
I came here in search of something I had lost.

I'm a master at losing things.

Dystocia

Ethan's current differential:

cerebral palsy caused by asphyxia during dystocia.

I think the mystery of Ethan's disability is finally coming to a close however painful it may be.

Also gathering up information to take to a lawyer.

We see a CP specialist on November 12.

I haven't slept in 2 weeks. last night I cried it out on the phone with his father. I told the dance company that I am going on hiatus likely for at least a year.

Recalling the horror of my birth story now with added bonus that my baby did not come out of that healthy makes me sick to my stomach. Especially because I have always felt my birth was extremely mismanaged.

Doctors have also been chasing down the wrong path for years. I do feel that this Dx is starting to explain some things that I had always just waived off as behavioral. I do hope with a correct diagnosis Ethan can start getting the correct help that he needs to live out the rest of his life. At the end of the day, he is the one that has to cope with his disability.

It hurts inside. A lot. I am having a hard time relating to anyone and feel very alone. I have a feeling that 2013 will be the hardest year of my life.

Coalitions.

I will probably never forget this moment that happened on Sunday.

Ethan was writing a paper for school and sitting in the kitchen. He had been working diligently for about an hour. He looked up at me and said, "Mom, how come I can't move my wrist?"

I looked down at him and said, "Honey, what do you mean?"

He held up his hand and sure enough he has no flexion in his wrist. He has more in his left wrist, maybe 45 degrees but it still isn't full flexion.

I didn't sleep well last night. I woke up and spent my work day taking calls on breaks and lunch trying to figure out where to take him.

We went though this over 4 years ago and it was a nightmare. Never in my life have I been so stressed out as during the time that no doctor could diagnose my son. As I called around, orthopaedics refused to see Ethan and said the only place for pediatric orthopaedics is at Carrie Tingly. He had seen many doctors at that hospital and I felt that during round one, the "best doctor" they had left me with, "I don't know what is wrong with your son." She seemed to have given up. We did eventually find a podiatrist that would work with us and while x-rays and MRI were inconclusive, managed Ethan has though he had a diagnosis of a rare genetic disorder called tarsal coalition.

We do have an appointment Friday at Carrie Tingly to now see a hand specialist. Dr Kim, at my job suggested that I have him see a geneticist. I got an appointment for him to be seen in February. I told my story to the receptionist at Carrie Tingly, who actually seemed to care and we are apparently seeing a different doctor who is also apparently, "the best". She is only available on Friday mornings, which makes me hope she is from out of town which may be in our favor and may actually make her one of the best.

I am trying to remain calm as I felt on the verge of a panic attack recollecting the stress involved years ago.

I seriously cannot believe this is happening again. I would trade anything and everything to have an able bodied healthy son. Nothing is more painful or stressful than having a child who is not in good health and in pain.

Tags:

This house is falling apart.

Managed to have 2 panic attacks yesterday all revolving around my house. I hadn't realized this was happening until David pointed it out. The first started because I had gone to the gynecologist and one of the questions they ask is, "Do you feel safe in your home?" I had to respond with "NO". Then I had to explain this statement. It made me so ill that I broke down crying, called David in a panic, and basically freaked out in the doctor's office.

The second happened as I left my friend's house from dinner. She lives in a house in the heights in a very nice area of town. Her and her husband have renovated their backyard and it is just so beautiful. On the way home, David and I were talking about what we could do to fix our property and it sent me in a panic causing tears as we neared the house.

I take 0 pride in this house. Being here feels like prison. I am so embarrassed of the area of town that I live in. I live next door to someone who is a convicted felon of violent crimes. He has displayed violence towards my husband, myself, and my dogs. We have had to call the cops on him twice.

I can't stand being here so I basically try not to be here as often as possible. I go out of town a lot. I go spend the night at my bff's house on the weekends I am in town. This is taking a toll on my marriage. I am so uncomfortable here I have quit having sex all together as my bedroom sits right next to this neighbor. I don't know how to get out of this place. I cry and beg my husband to move us out of this. We will only be able to sell the house at a loss, and we have no savings for a down payment on a new house.

I seriously do not recommend to anyone to buy a house in your 20s unless you have some rockin career where you make so much money that you can get a nice house. I have a fucking dump in the shittiest area of town. I have to drive my son clear across town to go to a decent school. My son has no friends that are close to him. He doesn't play with the neighborhood kids because I dont' feel like he is safe to do so. I cry weekly over this. I need to get out and just don't know how. I am tempted to move out with my son to an apartment which would cause David and I to separate. That scares me but I feel like I can no longer live like this.

And what am I doing tomorrow? Going horseback riding and spending the night at Rebecca's house. This will be the second time this week. And why am I typing this? Because I woke up in a 3rd panic attack thinking about this house. I thought it might help to write it all out and all it is doing is bringing me to tears.
Ticket to BHOF bought today. Gearing up for Show Me Burlesque Festival this weekend.

Showed David my newest act over the weekend. It is my first attempt at a fan dance in 8 years doing burlesque. He told me, "It looks like an average fan dance." So if that didn't make me not want to do the act again. *sigh* The act is done for May 26th but I think I am going to have to continue making modifications on it after that if I want to keep it in the rotation. And for the price I have paid for the freaking costume, I really feel like I should keep it in the rotation. *sigh*

Tags:

Date Night.

I am going to have the closest thing I may be able to describe as a religious experience tonight seeing Penn and Teller. David bought VIP tickets to the show this evening. I am really looking forward to it.

I don't always have an easy time publicly identifying as an atheist. Just last week at work, I found myself in the wrong expressing the social responsibility of only having one child to replace yourself. I found myself having to apologize in a medical environment for talking about science.

Hmmmmm... I thought I wanted to say more. I guess, even here I have a hard time expressing these thoughts. Time to put on a fancy dress.

its 3 am.

Something that I have wrestled with is this public figure/double life/weirdness that I lead.

I think it is finally really getting to me.

I have learned, that thank gawd I am not famous.

I love Alice.

Debuted a new act tonight. It really didn't go great, but it didn't go poorly either. Whenever I think I am doing well, I have some not so stellar performance to remind me that I still have much to improve on.

On an up note, I love the new costume so much, and I am going to keep working this costume to make it absolutely stunning.

This day went South fairly quickly. One of the doctors at work put in her notice. This is going to create even more chaos in an already extremely chaotic environment. I also ended my day on the note of euthanizing a small kitten who had an incredibly malformed jaw. And watched my dear friend nearly have a break down about it. UGH. Then 2 of my headliners for May 26th have dropped the show in the last 48 hours. I can't help but feel a bit hurt by this, and am trying to just be understanding, and not hurt by this. UGH. The show will go on, just disappointed, I guess. To top it all off, I come home to my neighbor being crazy because I have to let my dog's out to pee. She is convinced that I let my dogs out to harass her, despite that I am gone for 12 hours, 4 days a week. Nevermind that her dogs bark at me when I come home. Then I have to listen to her and her family threaten me through the window. I turned my music up and tried to tune them out. I really just don't know what to do with this neighbor situation. It is really unnerving, and sadly, I just really don't feel safe living here any longer.

So all of this leads me up to a not so stellar performance. I guess I shouldn't be too disappointed.


Tomorrow, Penn and Teller.
Last month, on April 14th I took a trip with the ladies of Burlesque Noir to Austin Texas for the Texas Burlesque Festival.

First and foremost, I fell in love with Austin. David and I have made it a goal to move there in a few years.

We had a great time watching the Friday night showcase which featured local performers, Godiva Bleu and RiRi Syncyr.

Saturday was the performer brunch. It is always a pleasure to listen to Indigo Blue talk about her experiences and give advice. She is one amazing lady. I spent the rest of the afternoon adding more crystals to the can-can costumes. I even used the crystals for my solo costume and added them to the can-can costumes telling David, "I don't have a lot of stock in this solo, but I really think that this group number has a chance at winning tonight."

What a great time Texas was. Despite the little stage, we managed to get all five girls on the stage for our Can-Can number. I managed to lose both of my pasties in the act. I have come to realize, that I will not be doing burlesque when I move to Austin. I sweat just too damn much.

After that number, I was also competing with my balloon act, with sort of a quick change. As I was putting on my lightening hat, Coco Lectric told me, "You have a Coco Lectric on your head." I grinned. This must have been a good luck charm now because I walked off stage having had such a fun time with my solo number.

The girls and I watched the rest of the competition, screaming our heads off and having a great time.

The moment for awards was here. Best Ensemble, Burlesque Noir! All of us got up, grinning from ear to ear. We sat through the rest of the awards just happy as can be. The last award, Best Solo was announced, Holly Rebelle. What? Me? Huh?

That took me a moment to get up and accept my trophy. That was crazy!

Time for beer!

Getting home, was an adventure. Never had a gotten on a plane over the arrival destination to have the pilot come over the intercom and say, "It is not safe to land, we have to turn around." So David and I took the bonus Austin to Austin flight. Thankfully, several plane changes and shuffling we made it home that evening, with 2 trophies in my suitcase.

I don't know how many performers in my community have taken home both the Best Solo and Best Group awards at the same competition. This was the moment, that I accepted that I am doing something right.

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I'm a model!
eclypsia
Rebel Girl

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