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Posts Tagged ‘current events’

My Big Fat Life – Orlando Shooting & Church Activists

In Uncategorized on June 12, 2017 at 10:31 pm

A year ago 49 people were gunned down in a nightclub in Orlando. They were targeted because they were gay.

I don’t talk much about the LGBT community since I left it behind, but when I see headlines that scream of violence against those who are victims of hate crimes based on their sexuality my heart is reminded of the struggle of what it means to be gay in America. While it is true that gay people have it considerably better than in most countries, it still isn’t a very good threshold to measure progression when it comes to the acceptance of others based on who they choose to love.

I came across a Facebook page recently of a woman who claims to be an activist for God. Her name is The Activist Mommy. I checked out her page after someone posted a Change.org link regarding a plight to get her page removed from Facebook. I highly doubt it will do much because people still have a right to be an asshole in the U.S., and freedom of speech is a vital thread of what makes us so unique as a country. People have a right to their opinion, no matter how much a douche it makes them look. The perk is we get to see who people really are when it comes to such political and religious views, so we get to know who to avoid.

I read her page looking for some semblance of compassion or love, and it wasn’t a huge surprise I didn’t find any. I don’t think it comes to the surprise of any in the community that the church has long bred an attitude that tolerance is somehow acceptance. I don’t even like that word “tolerance” because it somehow equates patronizing in my mind. People who strongly believe in the church (I say church for a reason), feel it is their duty to show just how much they disagree with conceived sin, so they post memes on Facebook, make status updates, hit the like button on every article that validates their belief, and comments on news feeds. They shout a hearty “AMEN” each time the man behind the pulpit proclaims they are making a stand on sin, as though the louder they agree it equals wearing a badge of honor to measure their integrity. But… it’s not.

Even if you believe that being gay is a vile sin that you act upon, the bible is still very clear about how we are to love. In fact, the act of love is spoken more than any scriptures you might find to address that being gay is a sin, and yet it is the single most act that most people fail to do well. Whether in relationships, to strangers, our neighbors, and friendships. Heck, I will admit I often suck at being nice to people when I feel I am right about something and they are in the wrong. When we feel we are right about something, it trumps our ability to love actively. We get so fixed on being right, and proving it, that we forget there is another person involved in our actions; the person on the receiving end of our stand or response.

I don’t doubt that some of these people believe they are doing God’s work, and believe that they are making a change in the world. On the other hand I know they are not doing anything other than creating more anger, hurt, and validation that God is nothing more than an angry man who is more interested in hurting us creatures on a spinning blue marble, than loving us. Yet, isn’t love the basic foundation of His message? Let’s just believe for a moment that all people believe in God, but who would want to serve such an angry and quick to condemn deity unless we had the fear of eternal damnation looming over us? No one. That is why the message of love is the most important message of all. The simple act of love without condition is the hardest to do for us. Perhaps that is why it has been written about so often. The message has to be driven to us. Paul wrote letters to the church about it, and depending how you feel about the truth of the cross, God sent His son to show us. Just being kind to others can be a challenge, let alone loving others we feel are in the wrong. I also find that the actions people get most fired up are the ones they either struggle against themselves, or can’t ever imagine acting upon. The first lending to the belief that if they fight against it enough it somehow will create almost a hatred for it and therefore reduce the temptation, and the second because people always argue what they don’t understand.

Love isn’t “tolerating” or accepting the acts of another as correct or in alignment of our own personal convictions. It’s loving that person regardless of what we personally believe. Our morals are separate from the act of love. We can love someone and have no relationship with them outside of our feeling for them. In fact, at times that is the best for everyone involved. I love my sister, but I can’t have a relationship with her because I don’t agree with her choices. Her choices affect me when she chooses to use drugs. I don’t want that around me, or my family. But I do love her. I want the best for her, yet I know that a relationship with her is not the best for me. She does really dumb things when she uses, and has removed my ability to trust her judgement. Does that mean I am going to yell and scream some condemnation at her every time I see her? No. Does my lack of doing so somehow translate that I am accepting or tolerant of her choices? Nope. It means I love her, but I choose not to allow her choices to influence my daily life anymore.

I have spent a lot of time talking to people during my time in the community. I have asked questions, listened to stories, and hurt as I listened to the damage the church has done. A majority of people in the LGBT community have already heard the message. There is nothing new you can scream from a picket line or post on Facebook that is something new to them. Most of them were raised in the church and already know the message. Many of them are still Christians and long for a relationship in a church; for human connection. They have struggled in their hearts knowing the message of the church, and their natural attractions. They have been at war with themselves so many times, there is no new scar you can leave that will laid upon three more. What they haven’t heard enough of, is love.

Chances are if you move about in society, you have already come in contact with a gay person. The lady behind the register, the Dr. treating you at the hospital, the vet who cares for your pet, the stranger you bumped into at the store, the man behind the ticket booth at the movies who sold you your ticket to the movie you have been waiting to see for months…. you get the idea. Chances are you have already come into contact with someone who is gay. Did you need to know their sexual orientation to be kind to them? Of course not. The act of being kind requires no back story. It requires nothing more than consideration without prejudice.

Sometime ago I had an argument with my boyfriend. I can’t even recall what it was about because so much time has passed that whatever it was obviously wasn’t that life altering. It’s my nature to walk away when I get upset.I need to allow the logic to rise above the emotion so I can think clearly, and the only way I can usually get there is to walk away to a quiet space and just ride it out. It’s a good thing because I can be quick to say really shitty things when I get upset. I’ve worked hard to be more careful with my words, even though I don’t always succeed. The other reason is because I grew up not being allowed to show emotion, so I instantly just walk away because I am used to having my thoughts and feelings discarded. What I can tell you I recall about that day is when I stood up to walk away and he reached for me. He put his arm out, touched me and gave me a hug. I couldn’t even tell you what I was wearing that day, but I can tell you how I felt in that moment. One simple action that isn’t so simple when we are hurt gave me a sense of love, security and acceptance regardless if he was disagreeing with me or not.  He wasn’t showing me a message of tolerance, or acceptance, but love.

Just love.

 

The 49 people who died because someone didn’t know how to love:

Edward Sotomayor Jr., 34

Stanley Almodovar III, 23

Luis Omar Ocasio-Capo, 20

Juan Ramon Guerroro, 22

Eric Ivan Ortiz-Rivera, 36

Peter O. Gonzalez-Cruz, 22

Luis S. Vielma, 22

Kimberly Morris, 37

Eddie Jamoldroy Justice, 30

Darryl Roman Burt II, 29

Deonka Deidra Drayton, 32

Alejandro Barrios Martinez, 21

Anthony Luis Laureano Disla, 25

Jean Carlos Mendez Perez, 35

Franky Jimmy Dejesus Velazquez, 50

Amanda Alvear, 25

Martin Benitez Torres, 33

Luis Daniel Wilson-Leon, 37

Mercedez Marisol Flores, 26

Xavier Emmanuel Serrano Rosado, 35

Gilberto Ramon Silva Menendez, 25

Simon Adrian Carrillo Fernandez, 31

Oscar A Aracena-Montero, 26

Enrique L. Rios Jr., 25

Miguel Angel Honorato, 30

Javier Jorge-Reyes, 40

Joel Rayon Paniagua, 32

Jason Benjamin Josaphat, 19

Cory James Connell, 21

Juan P. Rivera Velazquez, 37

Luis Daniel Conde, 39

Shane Evan Tomlinson, 33

Juan Chevez-Martinez, 25

Jerald Arthur Wright, 31

Leroy Valentin Fernandez, 25

Tevin Eugene Crosby, 25

Jonathan Antonio Camuy Vega, 24

Jean C. Nives Rodriguez, 27

Rodolfo Ayala-Ayala, 33

Brenda Lee Marquez McCool, 49

Yilmary Rodriguez Sulivan, 24

Christopher Andrew Leinonen, 32

Angel L. Candelario-Padro, 28

Frank Hernandez, 27

Paul Terrell Henry, 41

Antonio Davon Brown, 29

Christopher Joseph Sanfeliz, 24

Akyra Monet Murray, 18

Geraldo A. Ortiz-Jimenez, 25

 

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My Big Fat Life – Jesus Take The Wheel (but let me press the gas pedal)

In Uncategorized on October 14, 2014 at 9:43 pm

Gabriel had another seizure the weekend before last. It was one of those grand mal seizures, and scared the crap out of me. This makes three now.

The second seizure he had was something called a “partial”, and it was after that the Dr ordered an EEG. The day before he had this last one he had the EEG done at the hospital he was transferred to, so the ER Dr. was able to speak to the neurologist, who spoke to someone who then spoke to the neurologist, when then spoke to he ER Dr., who then spoke to me. Yeah, I know.. confusing, isn’t it?

The initial impression they have from the EEG is the same one the neurologist spoke to me about when we met her for the first time, last week. Gabriel has Benign Rolandic Epilepsy. He may outgrow it, but the onset of it has come a bit later than usual, so it all really remains to be seen. He will stay on medications for 2 years, and they will do another EEG to see what that looks like. If it’s clear, then he will go off the medication.

From what I have read, the children don’t typically need medication, but because he has had so many in such a short amount of time, they put him on it.

So now we have answers.. more answers. It’s been a bit overwhelming at times, and I have gone back to spending time with tears. I have learned to be a heart parent this past year, and now I need to learn how to see a grand mal seizure without freaking out, but all in all I remain greatly blessed. I do wish that my Gabriel could just have a time where life wasn’t throwing something new out at him, and he could focus more on the things teens worry about instead of worrying about having something happen.

Anyways, I kinda feel like I am telling God to take the wheel, but keeping my foot on the gas pedal trying to control the speed of things where I want them to be. I know I can only do what I can, but it sure would be nice to feel I have some control in this situation where I feel helpless at times.

 

 

 

My Big Fat Life – Last Pill

In Uncategorized on June 12, 2014 at 1:07 pm

June 11th was supposed to be the last day of prednisone, but apparently I counted the days wrong, and it was this morning. This day has been a dreaded coming.

When I was putting his pills in his medication dispenser a few days a go, I started tearing up. The forced reality that this is it, really hit me. This is the last time the Doctors are putting Gabriel on prednisone as a treatment for his condition, and we are cautiously hoping the colchicine works.

Tomorrow marks the last day of school for him and his brothers, so I’m pushing the homework to get the boys finished. It’s been a really stressful week around here preparing for the end of school, and the end of Gabriel’s prednisone treatment. I am looking forward to school being over for a few months while we get Gabriel’s health sorted out. I was really hoping to do something fun for the kids after school released, but I have no clue what I can do that will keep us close to home just in case Gabriel gets sick again. I also need to start looking at the fact that I need to move. The boys and I have been cramped in this stupid apartment that the ex and I moved into as transitional housing until a home was purchased for us to live in, but we have outgrown it and honestly I would love to have a washer and dryer of my own, instead of using the laundry room. The money I am spending to live here and pay to do laundry, isn’t really putting my money to work to help a single parent who needs every penny possible, to feed 4 boys. If you are reading this and know of available housing, please feel free to email me. You can reach me at lesbian_spaghetti@yahoo.com.

So here we are, and here we go…

#FeelsLikeAWeekOfMonday

(Gabriel on the morning of surgery 8/8/2013 and 5/2014. Less than a year difference and you can see how prednisone and this illness has taken it’s toll)

Image

 

My Big Fat Life – What Are You Staring At?

In Uncategorized on June 2, 2014 at 8:20 pm

I used to get really offended when kids would stare at Gabriel when we are out in public. You see, because of the prednisone doses, Gabriel has been dealing with a suppressed immune system. Because of this, when we go out I make him wear medical masks to reduce his chances of walking into a cloud of droplets when kids (or adults) cough and sneeze, and fail to cover it up. This isn’t a hard concept to learn, yet I see people fail to do this all of the time.

Lately I have come to the conclusion that kids are just going to gawk at my child no matter what, and it’s not a reflection of crappy parenting, kids are just naturally curious and lack the politically correct barriers we enforce on everyone else around us. What I haven’t come to accept yet, are the adults that not only gawk, but I have seen whisper and then giggle while looking at my son. This isn’t even a politically incorrect response, it’s just a social douche move. I can handle the kids gawking, but the adults who lack any social grace just annoy the heck out of me. I’ve started just looking right at them, and informing them that my son isn’t contagious, I am protecting him from people. Yes, maybe a snarky response, since I am also giving them the “people like you” look when I say it, but really.. what the heck?

As if my son doesn’t already feel weird about the weight gain from the prednisone, he now has to deal with wearing a mask which further singles him out, just so he can have some sense of normalcy in his life, by getting to go out and do things. Add the fact that kids and adults (who should know better) stare, and it’s not exactly the most amazing experience to go out in public anymore.

I thought I would share a thought that may help with the social experience if you ever find yourself in the space that you are staring in curiosity, that would not only remove any idea that you may be one of those people who lack any social swag, but would also make the person on the receiving end of your stare, maybe a bit more happy. It’s really easy.

Smile.

Yes, just smile. No, not one of those douche snark ew-what’s-wrong-with-you smiles, but just a nice kind smile. If you find yourself staring at the guy in the wheelchair, or he kid with a medical mask on, and they see you.. smile. Make it look like a moment you are offering a moment human connection, and just smile. I would much rather you smile at my child than give him on of those expressionless stares, and whispering giggles. Okay, so you are probably stating and wondering what is going on, or maybe you are thinking to yourself some expression of sadness for whatever it is that ails a person to be in that position to begin with. Whatever it is that is going through your mind, just please find a way to offer up a genuine and kind smile. A kind, generous and often welcome response to whatever it is you are thinking can make all the difference to the person of your curiosity.

As for your children, it’s okay. Maybe not to other moms, I can’t speak for them, but I can speak for myself. Just perhaps if you notice your child staring, use that moment to teach your child to smile in response to making eye contact with other people. When you get to your car, share with them that sometimes people look different and that is okay, and a smile is an appropriate and polite way to quietly greet others. Can you imagine the way we could change the way we interact with others by simply teaching our children, and ourselves, to smile at other people?

That would be a wonderful thing.

Last night Gabriel had some pain, and it bothered him up most of the night. It was in his shoulder, which is one of the symptoms that we typically deal with when fluid starts to build up around his heart. Thankfully it is now 8 in the evening and it never progressed, so I am relax a bit with the hopes it was just a random ache or pain.

Since today is Monday, that means another taper of the prednisone and it being the 2nd of the month, it means this is the start of his very last taper. I always find myself riding the wave of anxiety when the time draws closer for him to go off of the security of the prednisone, but this time we have that little purple pill on board (colchicine), and so I am trying to let the cautious hope ease the crop in that wave, just a bit. I’m not really doing such a great job of it, but after months of having been in this place before, I am learning some coping skills. One is that I am shutting down emotionally from those around me, but I am not shutting people out. In the past, I just went into emotional survival mode and shut everyone out, with all of my energy focused on trying to ride the wave without falling off and belly flopping into my metaphoric ocean of anxiety. Now, I am still in that place, but I am learning to ask for a hand from those I trust will help catch me. I’m still not 100% with this skill, but I am getting better.

I still don’t have a lot to give out to those around me during this stage of the process, and I am learning to be okay with that. I used to put a lot of expectation on myself to meet the expectations of those around me, even in my stress, but that would just weigh even heavier on me, and honestly I can’t do it. I am learning to identify the difference of the expectations of others put on me, those I put on myself, and the reality of what I should take on at any given moment. That might sound like a big lesson, but really I am just living it one moment at a time.

Now if we could just live human connection, one smile at a time…….

(Gabriel at the grocery store. As my daughter, Sarah, recently acknowledged on a recent shopping trip.. no, I don’t mess around with the cereal)

Gabriel Shopping

 

 

My Big Fat Life – Waves

In Uncategorized on December 5, 2013 at 9:53 pm

When I was pregnant with Isaac and Gabriel, I went through a very dark place in time. It was really difficult. I carried death and life with me every single moment. I couldn’t walk away from it, I couldn’t deny it. Every time I looked down, or in a mirror, there it was. I was pregnant with a son who would not live, and a child who would work so hard just to live.

The time I went through was one of the worst times of my life. It took me a lot to make it through that time. I yelled at God, I screamed at people I loved and cared about, and I often struggled with analyzing every single thing I did that could have caused the pregnancy to turn out like it did. Every medication, every food, every breath. It just seemed I couldn’t get out of trying to figure out what I could have done differently. The truth is, there is nothing. I understand that now, but try telling that to myself 13 years ago, was a whole other story.

When I was assured more than once, that Gabriels heart was okay after her returned from the NICU, it took me time to chill the heck out. I watched him breathe, a lot. Every little sniffle was a red alert to me, and I just wanted to be on high alert. It took time for me to get out of that crisis mode. Years even.

When this past June it was discovered that in fact he did have a heart defect since birth, every single fear that lay in hibernation, emerged and with a roar. When I stood out in the hallway and the very doctor that told me so many times before my son was okay, was now telling me that they found something.. my whole world changed. I changed. Not who I am as a person, but how I see things. Things that I used to get really upset over, are now no longer the biggest things for me to stress about anymore. Yet some things I never considered I really thought about, I think about a lot more. Like, if today was the last day I was to live, would I be happy with where my life is? Would I regret something? Would I have wished I didn’t compromise the things I really believe in, just to make others happy?

I also find that I often get really annoyed with some people easier. In me, I know that all people go through things that are relative to them, and while it might seem trivial to me, to them it is a big deal. It’s happening in their life. Yet, sometimes I cringe when I hear people complain about the cold their child has, or they lost a whole hour of sleep because their spouse refused to get up to help. I look around me and I think of the times I wished I had someone in the house to help, or how a cold would be such a blessing in comparison to what my child is struggling with. There are days I don’t even get to change from my pajamas before 5pm, let alone  have a moment to myself to even think about the last time I sat down to eat.

I am also starting to understand why they say some marriages and relationships don’t survive the struggles people face when a child becomes ill. It’s taken a toll on friendships and relationships in my life. Just when I think I can catch my breath, I spend an hour in the doctors office, or the ER, or with a specialist, and I am right back in crisis mode all over again. I ride this constant wave. Some days I just want to turn my phone off, and ignore everyone so I can catch my breath. Some days I just feel incapable of giving to others outside of the boys. That includes myself.

I am not sure when I will finally be able to sleep a full night without waking up to look at Gabriel to make sure he is still breathing, again. I am not sure when I will be able to wear mascara again to a doctors appointment, or when this wave will crest and then crash. I have no idea. I have no idea about anything anymore. I do know that I am beyond thankful for my children, I am beyond thankful for the people who love me. I also know that I am working through so much and I need understanding from those around me as I rise and fall over and over again. I need to be selfish right now. If that is even what it is called. Is it selfish to want to just not think for a day? I don’t know. If it is, I need it. I am not ignorant to the things relationships in our lives to survive. But I also know life brings highs and lows and seasons are not always equal. What we put out isn’t always what we are going to get in return, because life in all of it’s idealistic simplicity, just doesn’t work that way. Sometimes we need to be the stronger one for the other. Sometimes we need to be the cheerleaders. Life is not this perfect balance. I wish it was, but for all the self motivational memes on Facebook of idealistic quotes, it just isn’t. It’s impossible to explain to those around me who have never had a child with an illness. But even then, pain is all relative to our life, right?

In the medium, I would like to say that if you are reading this and you have a little one at home with a cold that has kept you awake all night, know that there are some parents out there tonight who would give anything to be in your place with their own child. If the worst thing that happened to you today is that someone cut you off in traffic and you forgot to get peanut butter at the store, be thankful. If you know someone going through a tough time, be there … unconditionally. For all the things you are feeling, you have no idea what it is like to be where they are. They might appreciate that smile on your face more than you realize, even if they look back at you with tears in their eyes.

My Big Fat Life – Here We Go Again

In Uncategorized on December 1, 2013 at 11:02 am

One of the few things people know about me, is that I have to listen to R&B when I write. I have never been able to figure it out, but as I sit here I have Toni Braxton blaring into my ears. I have to say she makes me feel I have my groove this morning, and I can tackle just about anything. Perhaps that is the connection.

Gabriel is sick again.

 

He was off the steroids and seemed to do really well for a couple of weeks, and then he started getting sick again. I knew the signs, and as soon as I saw them I took him back to the cardiologist. Long story short, he was dismissive and told me that Gabriel probably just had muscle cramps. I had seen this four times already in Gabriel. He starts to hurt, and within 3 days he starts to run a fever. We saw the doctor on the third day in, and later that evening the fevers started. Finally his pediatrician ordered blood work and sure enough his lab results showed he had high numbers indicating inflammation. I would not give up taking him in to be seen until someone listened to me. I find it really annoying when you are a parent, and you are dismissed when it comes to your children. We are the parents, we know out children. I also know Gabriel never felt like this until he had the surgery. I have no idea why, but every time he starts to get sick now, he gets this pain in his right shoulder blade. Before you know it, it moves around and the fevers start. Soo when the cardiologist told me that it was just muscle cramping (and I didn’t know what I was talking about) that just made me push that much harder. In defense of Gabriels cardiologist, it wasn’t his typical doctor. He was on holiday, and so this was a doctor that was filling in. 

The pediatrician put Gabriel back on a high does of steroids, and by the next day my son was up and dancing around in the kitchen. It was nice to see him feeling better. When his cardiologist came back from holiday, we went in to see him and talk about a game plan here. Gabriel can’t live on steroids the rest of his life, and so I wanted some answers. He decided that adding the care of a rheummetoligist might help, since they deal with inflammation of the heart sac, which is where everyone seems to think this is where the inflammation is taking place.

We were so late for our appointment. I was trying to get out the door and the key broke off in the lock on the way out the door. Then finally on the road we were stuck in traffic 4 lanes wide, and backed up for over an hour. By the time we got there, we were already so late. Before we left, the dog sneezed on my tea. It was probably a dog curse.

The doctor was really nice in a quirky sorta way. I saw the potential for the God complex that I have over the years when working with specialists, but he seemed genuinely interested in wanting to help as much as he could. It wasn’t so reassuring when he told me that he had only seen one other child post op who presented with heart inflammation, and that child responded first treatment. We are Gabriels 4th. He told me that all the people he sees with heart sac inflammation are not post op, so not related to a surgical procedure, and some of those people have to have the sac removed from their heart in order to make it stop. I already knew that was a resolution for some of the cases, but I have been really keeping that to myself. I still don’t like speaking that out loud, because I refuse to even go there in my mind yet.

So we left with yet another round of extensive steroid treatment. On Friday I spoke with the cardiologist again and he told me that Gabriel is stubborn in healing, and he is hoping that another treatment, with a very slow taper, will give more time for his heart to heal from the surgery and hopefully by the time he is off of it, he will be just fine. He said healing in total really takes up to 6 months. I asked him about what the other doctor said, and I talked about my concerns that maybe the inflammation could be from somewhere else in his body, related to the surgery. I asked him at what point we could have a cat scan and heck things out. He told me that if Gabriel doesn’t respond to treatment this time, that he will do a cat scan. While right now we have no answers, and I am riding this wave of emotional of worry, I feel good that we have a plan. The cardiologist also assured me that they will now listen to me next time, and when I come in knowing my son is ill, they will be sure to not be so quick to dismiss it. This is a good thing, because watching my son in pain until they decide to take action, is just wrenching.

Gabriel is starting to feel weary from the constant ups and downs of feeling like shit. He told me the other day that he feels like he missed out on his whole summer and having fun. I feel awful for him, because I know he is right, he has. He wants to go have fun so badly, all of the boys do. I try to think of things we can do, but I also have to be careful not to take Gabriel into some major crowded areas where everyone and their dog are coughing. I really feel for the kid. He needs to have some serious fun. I’ve got to some up with ideas.

In other news, I filed a complaint with the Department of Education in regards to removing my other sons aide from his IEP. You would think this IEP team has better things to do, than try and bully a Mom who has other things going on, but I am starting to feel like they are taking advantage of fact that I have my head wrapped around other things at the time. Which, I must admit, just pisses me off more. When I am stressed out, or I am faced with something, I tend to fight that much harder to push through it all. Defeat is not in my vocabulary. If things don’t work the way I believe, then I simply feel that maybe that is divine intervention leading me another way for whatever reason, but I do not back down to advocating for those I love and doing what I believe is right.

That all being said, I must also confess I would seriously love a hug right now. Less telling me how strong I am, and more hugs are absolutely in order. I could go on some wave of how difficult this can be at times, but I am pretty sure you have figured that out already.

Someday I will wear mascara again. I believe this.

 

 

My Big Fat Lesbian Divorce – Gabriels Heart

In Uncategorized on July 21, 2013 at 8:32 pm

The blog posted before I was finished writing. Apologies for the resend, but this the complete entry. It was a premature enter button push.

My Big Fat Lesbian Divorce (and other tales of a former lesbian)

It’s really freaking hard to think that it has been almost a month.

So, here is the run down on where things are.

August of 2000 I gave birth to a wonderful boy. In fact, two of them. I had twins. Only, mid way through my pregnancy (at 20 weeks) I was told I was going to have twins, yet one wasn’t alive. They were in fact, conjoined. When I tell people, they want to know how the boys were conjoined, and usually think of what is full conjoined twins or most commonly known as Siamese Twins. The boys were conjoined, but by one long umbilical cord. The cord made a stop off in the placenta, but kept flowing to the other baby. It is called T.R.A.P Syndrome. Gabriels heart worked for both babies.

When I was told, I was devastated. I grieved the loss of one child, though I…

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My Big Fat Lesbian Divorce – Gabriels Heart

In Uncategorized on July 21, 2013 at 6:35 pm

It’s really freaking hard to think that it has been almost a month.

So, here is the run down on where things are.

August of 2000 I gave birth to a wonderful boy. In fact, two of them. I had twins. Only, mid way through my pregnancy (at 20 weeks) I was told I was going to have twins, yet one wasn’t alive. They were in fact, conjoined. When I tell people, they want to know how the boys were conjoined, and usually think of what is full conjoined twins or most commonly known as Siamese Twins. The boys were conjoined, but by one long umbilical cord. The cord made a stop off in the placenta, but kept flowing to the other baby. It is called T.R.A.P Syndrome. Gabriels heart worked for both babies.

When I was told, I was devastated. I grieved the loss of one child, though I had to carry to term, and every day I worried about the health of the other. I was told there was a chance he wouldn’t survive the pregnancy or delivery or birth. The amount of stress was immense. I was grieving the loss, and also trying to prepare the birth of the other without knowing if he would survive. I literally didn’t just reserve one plot for burial, I had to hold two. Yes, it was that awful.

I spent a lot of time (as you can imagine) seeing a specialist, and having ultra sounds done. Every week, and as the time got closer every few days, it was really hard to lay there in the ultrasound room. I wanted to hold that baby so bad, yet I was so afraid to hope. It is a safe thing to say that I walked around in pretty much a depressed state most of the time. I isolated myself and had just enough energy to keep my shit together and try to keep on keeping on for the sake of everyone else. Though I would sit in the bathroom, lock the door, and just cry.

When Gabriel was born, he was transported to the NICU at Doernbechers. I was told that his heart was a mess, and they needed to help him. I was stuck at the hospital where I birthed him, because the medication used during the birth still hadn’t worn off. So off my new baby went, while I watched him being taken via hospital in that big tube. I was just beside myself with worry. He was so beautiful, and I couldn’t even be there to comfort him.

As they were taking Gabriel to the NICU at Doernbechers, the funeral home had already arrived to take Isaac. I had just given birth to two boys, yet I was there in my room, alone. My arms were empty. My heart, full.

Gabriel stayed in the NICU only 10 days. A far cry from the months they tried to prepare me for. I was told that his heart rate was normal, his oxygen level was normal, that everything about him was good and we could go home. I stayed awake for weeks at night, ready to pounce on every whimper. I was terrified to fall asleep. I was so scared something would happen to him, and I wouldn’t be able to help him if I was sleeping. But eventually I settled down and accepted that Gabriel was good. I even took him back for a follow-up echo cardiogram in 2005 *just to be sure* because no matter what, something in the back of my mind always worried. Again, I was told everything was fine. In fact, I remember that Dr telling me specifically that I would never have to have him tested again because his heart was absolutely fine. When the Pediatrician heard a murmur in 2007, and he was looked at once again, I was told again.. he was just fine. The studies were normal (I don’t like the word “normal” btw. I like to use “typically developed”, but for the sake of this and tell you the study results, normal it is).

Gabriel has had some struggles. He is hyper mobile, which means he can turn his leg almost completely backwards. It’s a fascinating, yet concerning trick. He has been plagued by tiring easier than the other children, though his drive to engage is healthy. He finds himself discouraged that he hasn’t been able to finish a “whole lap” at school like the other kids in his class. He’s short and if you recall from an earlier blog, was diagnosed as IGF1 deficient. I attributed some of these things to his poor muscle development and IGF1 levels, but I decided to still have the genetics specialist take a look and see what she thought might be going on.

When we went, she didn’t think he had Ehlers Danlos syndrome, but wanted to do an echo cardiogram to rule it out. So, we scheduled for it to be done on a day we had a lot of other appointments.

I am so thankful she did.

Because the same Dr who told me in 2005 that Gabriels heart was normal, told me in the hall, that Gabriels heart is in fact, not okay. I was just devastated. I still am. We were quickly shuffled to another floor to do an EKG and to meet the Professor of Pediatrics. He explained to me that Gabriel has Anomalous Left Heart Coronary. Meaning, a coronary artery is in the wrong place and it’s trapped between the heart and heart muscle. It’s not something people are even aware they have, usually until it’s too late.

I find myself once again in that place that I am so worried about Gabriel. I am so angry at Doernbecers for not finding this sooner, and telling me that I never needed to bring Gabriel back for an echo cardiogram, back in 2005. Yet I am so thankful the genetics specialist ordered a test, and the radiology technician found it. Mind  you it wasn’t the Dr who first did the test himself and missed it that found it, it was the technician who found it.

Frustration aside, I am trying to just cope with this moment to moment. Because I find myself in a familiar place with my Gabriel once more. I am worried about his health, I am worried about the surgery… no, I am terrified about the surgery. As the date draws closer to his surgery (open heart), I find myself wishing the days would go slower and I can have every moment possible to hold Gabriel.

Everyone keeps telling me not to worry, that medicine has progressed so much. Get real, I am his Mom. Of course I am worried. I have been this place before with Gabriel and it’s not an easy place to be. It’s scary as fuck, pardon my language. I cry, a lot. All I can think about is to get Gabriel through this complete and perfectly perfect and that kid can run a lap at school and kick some ass doing it. But yes, I am going to worry.

Anxiety anyone?

When I stood in that hall (Because as soon as I realized something wasn’t good, I asked him to speak to me in the hall. The Dr was actually going to drop this news in front of Gabriel and his brothers) I felt like I was being told all over again, that I was in limbo. The worry, the tears, the pleading with God, that this was just some awful dream. Only this time, I held Gabriel and cried. I listened as he told me not to worry, but that if anything did happen he wants to be buried with his twin (that was so hard to hear).

I am trying really hard to keep focused on this surgery, and in between my random bursts of tears, I am trying to focus on his upcoming birthday (which is a few weeks after his surgery). We will make it through this, and we will celebrate. We will have a kick ass 13th birthday party, and Gabriel will be better than he is now.

I do have to say that I have been sorely disappointed in that the people I thought would step up and be a support, haven’t been. I cleaned a lot of people off of my Facebook page and regretfully have closed the door of some friendships for now. I really need as much positive support (positive not meaning tell me a bunch of crap how I shouldn’t worry), but I mean by willing to listen and validate. When I was pregnant with the twins, I actually had a woman tell me “Well, when I miscarried a baby, I wasn’t left with anything so you should be happy”.. Yeah, right? .. wtf?  Even now, I have told people that if they look it up, I do not .. NOT.. want to hear their Wikipedia run down. I am listening to the doctors only right now. They are the ones with the information I need. Yet, I had a neighbor tell me how she looked it up and then proceeded to tell me things I asked not to hear. I cut her off, both conversationally and in contact. I can tell the difference between the people who are wanting to help and maybe say something that could have sounded better, and the ones who really should just think about what they are going to say, yet say it anyways.

Thank you to those who have stood up, for your love, support, and most of all prayers. If you have been reading this blog since I first started it, you have been with me through quite a bit in the past few years. I want you to know, that just knowing someone out there is reading this, has always been a great comfort to me. I may not see where the words fall, but I have always felt as though they fell in soft places.

That all being said, I need to rush off and get some things done. One being I should probably think about what to do for dinner. Apparently money doesn’t grow on trees, and neither does a fully cooked dinner for a family of five.

My Big Fat lesbian Life – Valerie Harper, Cancer & My Son Is Coming Home Today.

In Uncategorized on March 7, 2013 at 2:50 pm

Today is March 7th 2013 and today is the day that my son will be home. It’s been a little over two years, a cancer diagnosis, 5 surgeries and heaps of tears since I have laid my eyes on that kid last.

He spent the week competing in the Warriors Games Trials in California. Last night, the Marines took the gold in wheelchair basketball. I am so proud of him being a part of something that can show him that life can move on, even if it’s not the original direction in which he thought he would be going.

Today I read about the sad news of Valerie Harper, and her diagnosis. It seems so sad to me that cancer has to be such a part of our lives. If we don’t know someone who has it, we certainly have heard of those impacted by it. It touches too much. It pisses me off. As I read the news, I happened upon her People Magazine article in which she says “Don’t miss your life”. I read that and thought about all of the things I do in a day that I whine about, and yet have to do (like laundry and dishes). If my sons cancer has taught me anything, it is to appreciate that I am even alive to do the laundry and dishes. Yet I seem to be so exhausted by the end of the day and I feel only productive, if nothing else. I sometimes wonder if I am thankful enough, or if I am just so busy thinking I have to do everything, that I am afraid to leave the dishes in the sink and let the unfolded laundry go so I can just walk out the door and enjoy the sound of birds or visit a place I have wanted to experience. I sometimes wonder I am so thankful to be alive, that I am so busy doing everything I think I need to do, that I am forgetting to enjoy the things I can do. I stand in reflection of the things I need to adjust to keep moving forward with the most vibrant and productive self I can be. I need to not only learn to let my life me a productive one, I need to let it be a celebrating one. This life is such a gift.

My heart goes out to Valerie Harper and her family. I know they have a journey ahead of them, that isn’t easy. It’s full of too many lessons in a short amount of time. I am sure I am amongst many who were touched when we read of her diagnosis. I grew up watching her show, and as an adult I have watched the reruns. What I didn’t understand as a child, I certainly understood more as I grew. I think above an appreciation of her work, I will carry with me the words that I needed to read this morning. They spoke to me. As a single Mom with adult children, and children still at home (3 of which have disabilities), I really did need to read those words this morning. Not just for myself, but to teach my children.  I pray her family has the strength and peace they need to face the goodbye and embrace the legacy she leaves. As for myself, In a few short hours I will finally embrace my son and say hello. It seems so weird how life can bring such opposite acts, that can produce the same lessons.

If you follow me on Facebook (My Big Fat Lesbian Divorce), I will be posting photos tomorrow. Until then, be safe and happy and above all else…. live, and don’t miss it.

My Big Fat Lesbian Life – Wide Awake

In Blog, blogging, Break-up, C.S. Lewis, christian, communication, connection, dating, equality, gay, God, healing, Lesbian Relationships, LGBTQ, Life, Love, Oregon, Portland, relationships, Relationships, respect, sex, single, Uncategorized, women, Writing on January 15, 2013 at 12:14 am

I will open this with a hard truth.

Recently a friend of mine, Lisa Mae, asked me a very honest question during a conversation, as she listened to my latest mess of a dating situation where I had to break off yet another disaster. She asked me “Aren’t you tired of telling the same story?”

Yes. Very much so actually.

In my recent awakening that I have an incredible tolerance for bullshit (see previous blog titled “Bullshit”) I have been far less tolerant of the bullshit, much quicker. While it is awesome, it also really makes dating a challenge. Because people are just full of all sorts of crap that they haven’t dealt with. Her question reveled something to me quite honestly that I need to deal with. I want to write a new story.I had to think about what that means to me.

What it means to me is taking a new step. My first step.. I have decided to change my complete outlook on how dating will be.  I want to change my story in a lot of ways, and it starts with me. While I have a new lower tolerance for bullshit, it makes no sense to keep putting myself into situations where I give space to people I find in a matter of time, I have to walk away from. It’s empowering to walk away, but it also gets very lonely.

So how will dating look? I want to spend time getting to know someone. I want to bring back the lost art of conversation. The kind of conversations that don’t have sentences like “Hey, want to move in?”, “Let’s buy a puppy together.” and the ever so popular “Who’s paying for the U-Haul?” (add side conversations regarding bubble wrap and trailer hitches).

Since my proclaimed change, I have been asked a lot of about what it is I am looking for in another person. I think I have attacked this question in another blog, but I also think my thoughts may have changed (I hope at least matured) since. There are some things that of course, always evolve. These are the things though, that I have found over the past two years, that have come to mean the most to me as a woman.

1.) I need someone who is whole. By this I don’t mean someone who has never lived. I mean someone who has closure in their life. No open doors to the past that keep shades of light flooding into their space. No hauntings of ex partners they haven’t made closure on. I NEED to know that there is space for me in their life. I don’t want to share that space trying to compete with the memory, or emotions of someone else. I am an amazing woman. I deserve nothing less this time.

2.) I need someone who can deal with their own shit (pardon the language).  I need someone who has the ability to handle their own affairs, and does it well. I want to be there to support them in the way a partner should. I don’t want to be a treated as nothing more than a personal assistant.

3.) I need someone who has room for me. I want to be the only woman who is in their life. I want a life partner, not someone to just fill my time, but to share life with. I am not talking about every single moment of every single day. I need them to have outside interests and something separate from me, but I don’t want to worry if they are the type to not keep boundaries with others, for me.. us. I want someone I can build security with, and build trust. That is something that a lot of people don’t get either. I am not paranoid that everyone is a cheater or a manipulator, but trust is built. It is not just given. The floor to build trust on, is security. Make a woman feel secure, and she will trust you. It’s a two way street though.

4.) I want to be able to openly communicate and feel heard. I want to be able to talk to my partner when something isn’t working, and not be met with resentment. I want to give that to my partner as well. Respectfully talk, respectfully listen, respectfully react. I want someone who is able to take personal responsibility and work through something with a resolution, instead of trying to make me feel my response is just wrong and avoid having to take personal responsibility for anything. Ever have someone tell you “Well, it’s your fault. You are just insecure, get over it.” ? Well guess what? Sometimes, we do stupid things to make our partners feel insecure. If we are unable to take personal responsibility, we are not ready to take on the responsibility of being the lover of our partners heart.

5.) I want passion. I know romantic love comes and goes, I have always know that. Though passion is something I want to always work on. Not just the sexual, but conversationally. Mentally. I want someone who can mentally stimulate me. Teach me something I don’t know. Share new things with me. Music, books, literature, spiritual… Something that makes me feel alive. I have to admit, there is something about a mind that drives me wild. Share music with me, and I swoon. Music that is strong, alive with meaning and depth. Someone who can connect to those things, *sigh*.. yeah. Explore me with your mind, before  your hands.

6.) A sense of spirituality. It doesn’t have to be the same as mine, but a mutual respect of my faith, as I respect theirs. There is something to be drawn from each other when you share faith.

7.) Do not try to rescue me. I do not need rescued. I do not need a Prince riding in on a horse. Horses freak me out anyways. Just someone who can stroll in and share a stellar conversation. I want to walk next to someone and be a team. Someone I can depend on, and someone who can depend on me.

8.) I want to meet someone who wants to get to know me, just as much as I want to get to know them. Someone who will ask me questions about the person I am, and show interest in getting to know who I am. I always ask questions, and start conversation. I would love it if someone took the time to show me that I am worth getting to know, as well.

That is a good start to explain what it is I want. I almost venture to say need. I’ve compromised a few of these things from time to time, and well.. how has that worked out for me so far? Yeah, I know that no one is perfect. I am not looking for perfection. I am just looking to be true to those things that I know I have longed for.  Those things I know that move me, as a woman. I know I have compromised these things in the past, to not even be met half way. It doesn’t feel good to have people rush in, take what they want and leave the rest. It’s like allowing yourself to be an emotional clearance sale, opening the doors, and allowing people to just pull off what they want, and leave.

No more emotional clearance sales.

I’m just so much more worthy than being last seasons trend.

 

*Insert Wide Awake by Katy Perry. I couldn’t pick a more perfect song for this entry.