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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 – Yesterday, Today, and Tomorrow. Shit.

In blog, blogging, emotions, failure, family, fast car, feelings, Foolish Hearts, Friend, God, grief, healing, Laughing stars, Life, Love, Pain, Portland Oregon, Questions, Rain, Relationships, The Little Prince, Writing on February 5, 2015 at 6:54 pm

I came here to write about a few updates, but I think my heart is so heavy that I am just going to vent instead. I need.. NEED to get some of what is going on inside, out.

Tomorrow I have a biopsy. I have no clue if there is something going on, and frankly I am hoping there isn’t. I am absolutely terrified.

I’ve done a lot of thinking about my life the past few days. Heaven knows I am beyond happy that I am a parent, and I love these people more than I can express to you.  They give me more joy than I can even begin to list, and it wouldn’t make a lot of sense to since I am pretty sure you wouldn’t find it as entertaining as I do.

I do feel like if something were to happen to me today though, that I would be missing out on some things I have always wanted to happen, and certainly experience. I know that at the end of it all, that I want to know love. I want to know what it is like to share a bed with someone at the end of the day, knowing they will be there. There is no question, no fear, no worry… you just know they are there, and you’re a team. Is that even possible? Have I been watching way too many movies with scripted love?

Does it exist?

 

My Big Fat Life – Dating Men

In Uncategorized on January 5, 2015 at 5:45 am

Dating men.

Years ago when I used to date men my friends would find my dating stories entertaining. Not because they were good, but because my dates were bad. Very bad. From the guy who came up behind me and grabbed my hips while thrusting into me (I had innocently bent over a display in the store… yes, he did this is public) to the guy who tried to convince me that God didn’t want him masturbating so he needed me to give him a hand job. It seemed my dates were more set ready for a comedy tour than to set the stage for a successful relationship. For the record both of those were first dates.

Dating women seemed to be easier in a lot of ways because we communicated in a very personal way. We would spend the first hour of a conversation learning about each other. Our favorite colors, band, movie, where we grew up and all of that basic information we talk to people we are interested in getting to know better. Men, however, have proved to be a different experience.

Since I started to date men again, I’ve been on a few dates.  A sad majority of them have been listening to people tell me what a rotten awful person their ex is, and/or how they are just looking for a good time. One guy spent an hour telling me how wonderful he was, and another showed up looking NOTHING like his profile photo (this is also the guy who also informed me in the middle of dinner that he was too distracted by my breasts while looking at me, to even look me in the eyes while talking). Since a majority do seem to want to talk about their ex, I’ve I considered starting my own mobile dating crisis counseling service. Possibly setting up an app that allows guys to book a date with me. Payment in form of dinner, and random compliment not related to my breasts.

*make note to invest in tacky shirt that says “My other eyes are green” *

Now… I am not trying to make men seem shallow. I don’t believe they all are. I just simply have had some pretty bad experiences. In part because I guess I expect men to communicate the same way I would if I were interested in getting to know someone. I know I wouldn’t spend time starting at their chest, and I certainly wouldn’t spent the first 45 minutes of being in their presence talking about how awful my ex is. I just wanna know what your favorite pizza is, and if you can tell some stellar jokes.

I’ve made a big change in dating, and I expected it would be a learning curve. I’ve gotten to sharpen up my listening skills, and that’s always a good thing, right?  I guess a part of me is still just confused about the communication piece. Or maybe I’m not, and I still don’t understand why someone wouldn’t want to take the time to get to know me as a person or involve in a two way conversation over dinner. Is it really that hard to ask someone what their favorite color is?

Green.

So here I am on this adventure changing my whole way of life. So far it’s been interesting, and not exactly in the best way. But I guess it is all how you look at it, so maybe I will start writing a comedy sketch or shopping around for reality shows that might want to follow an out of the closet heterosexual, who is raising 4 boys on her own as we weave our way through the medical journey of one. TLC might be in the market now that Honey Boo Boo is off the air.

I know the differences between how men and women communicate is usually pretty different. I get that. Despite knowing this, I am still holding to my desire that someone might find me fascinating enough to want to know what my favorite flower is. If I don’t, I may start to ask people to sign releases and my dating life may soon be coming to a stage near you.

I’ll call it the Diaries of Dating: A One Woman Show. It’ll tour for one date only. I’ll whine about my ex for the first 45 minutes of a set, and then get too distracted by my own breasts to continue talking while looking at the audience.

I think I have the perfect shirt to wear for this.

My Big Fat Life – Throwback Thursday (365 days later)

In Uncategorized on June 26, 2014 at 5:23 pm

A year ago today I stood in the hallway at OHSU right outside the door of the ultrasound room, and cried as I listened to a cardiologist tell me that Gabriel needed to have life saving open heart surgery. These were the same halls I walked when I was visiting Gabriel in the NICU after his birth, and the same halls I walked when I was leaving the hospital with a little boy that I was told was in perfect health with a perfect heart. Even though I had my suspicions over the years that there was something going on with Gabe, nothing prepared me for that moment and those words.

Here we are 365 days later, and I never would have guessed that life would be so much different than where I thought it was that day that I made the drive to the hospital for routine tests for the boys. In some ways the changes are very disappointing and in other ways, life is much better.

I was going to write a list of the changes that transpired over the year, but recently my sweet friend Jessica posted something on Facebook that resonated with me so much, that I wanted to share the list of things she has learned this past year (with her permission):

1. People who actually care will make a way to be there for you when you need them.

2. People have different definitions of help.

3. People have different definitions of friendship. Just because you know what kind of friend you are to someone doesn’t necessarily mean they will be that kind of friend to you.

4. Ultimately, you don’t owe anyone any explanations for your living, romantic or self decisions (unless you are hurting someone).

5. My mother will always be there despite how she feels about whatever is going on… good or bad, or indifferent.

6. You know the answers in your spirit; we seek others for confirmation.

7. If when something goes on in your life and you pick up the phone to tell someone, the first person you think/want to tell is and should be your best friend or partner (if this isn’t the same person) . If you find yourself telling someone something and they aren’t the first person you thought to share your thoughts or happenings with, reconsider who you’re sharing with. Everyone isn’t meant to know everything.

8. If you are in a bind and you need help, the first person you know who will come through when you call is your family.

9. After all is said and done, whoever is left is your true friend. I fight very hard for my friendships/relationships. Fight for people who will actually fight for you and don’t be surprised when you find out people you thought were going to won’t. I’m learning who actually fits into that “friend” category. And although it sucks, it is definitely an eye opener.

10. MOST IMPORTANT LESSON OF ALL: You can’t expect anything from anyone. So… make your own life filled with happiness and joy the best way you can. You will meet amazing people along the way; know when to hold on and when to let go.

While I can’t really relate to #5 and I am not really into fighting to keep relationships intact this past year (I have had to keep my battles soft), this list really hit home with me. Especially #2 and #3. Besides these lessons, I have also learned that hope can be an enemy if not used with caution and that hugs (for someone who is not normally affectionate with strangers) are essential.

A year ago I never would have thought that some people who were in my life then, would not be a part of it now. Some of those relationships were redefined, and I am grateful for the preservation of those connections. I do miss friendships that fell by the wayside, but I am very thankful for the new friendships I made this year, with people I wouldn’t have met otherwise. I have met other heart parents along the way, and also Wendy who is a heart patient herself (she is a kindered spirit in the realm of parenting, and she makes me laugh on a consistent basis). These people have made me feel as though I can lose my shit in a place that is understood, even if our experiences are all different. I am especially grateful for a friendship that came from the most unexpected place with perfectly imperfect timing, how it’s evolved, and how now Omar has come to be amongst the most cherished people in my life.

Life hasn’t carried me where I thought it would. It certainly has changed in the last 365 days. In some ways the changes have been really disappointing, and in some ways life is so much better.  The best thing of all is that as I write this, Gabriel is playing a video game with his brother and I can hear the debate about the game take place. A year ago I was terrified that might not be the case.

Still not sure where the next year will lead us; I’m not even sure what tomorrow has in store (other than a soccer lesson). I do know that I am grateful for each and every one of you who have read my words, written me letters of encouragement, loved me despite my often bouts of frustration with this journey, and given me space when I needed it with the understanding that you would always be there when I was ready to talk. Your loving and patient friendship has meant a lot to me.

My wish for the next 365 days is for healing, love, and victories. I wish that for all of us.

 

(I snapped this photo of Gabriel on June 26th 2013, while he was being prepped to have the echo that would prove to be both life saving and life changing)

Gabriel June 26 2013_copy

 

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 – It Came In On a Dark Horse Comic

In Uncategorized on May 7, 2014 at 4:27 pm

Gabriel, he started a new taper to his prednisone yesterday (the Dr. had him do it a day late, since we typically do it on a Monday) and he is holding on this dose until he sees the Dr. again on the 12th. Other than some random pains that haven’t amounted to anything, he seems to be tolerating the taper pretty well, though the taper has never been the problem. It’s when he goes off the prednisone completely, that we seem to run into trouble.

This first week of May was pretty busy. On the 1rst, Dark Horse Comics made a special allowance, and invited Gabriel into their offices for a private tour. He and his brothers got to sit at the conference table, where some pretty cool things happen in the world of graphic novels and comic books. They were given a demonstration on how the art comes to life, and given some of the coolest goodie bags afterwards. Right before they left the conference room though, Aub (PR guy) let Gabriel keep a copy of the graphic R.I.P.D. which was displayed on the wall of the conference room. Since this is one of Gabriel’s favorite movies, he was pretty stoked. I hadn’t heard him let out a victory whoop like that, in months. Aub was pretty much my personal hero that day.

I don’t typically post things I have written prior to posting, because everything I post is something I am writing I the moment. However, I wanted to share something I wrote on April 30th, knowing that May is going to be the month we most likely find out if the Colchicine works. As the time draws closer, I panic a little more and try to find the good in all I can, in the moment.

April 30th 2014
It’s 2:38am. I’m exhausted, and quite possibly too tired to sleep. I’m sitting on my kitchen table, with the patio door open, and listening to the wind gently blow against the leaves like a perfectly written symphony. Boys and dog sleeping, the faint lights of planes as they fly over, and me. Just me. It was just me and a spoonful of whipped cream, but that’s done, and now it’s just me and a naked spoon. If I believed time could give hugs, this is what I imagine it would feel like. If I believed time could kick ass, April is what I imgine it would it bruise like. But if time truly does heal, then the future is what I hope it looks like. #Peace #Hope #BuyMoreWhippedCreamLaterToday

One week down.

(Gabriel sitting at the conference table at Dark Horse Comics 5/1/2014)

Dark Horse

 

 

 

 

 

My Big Fat Life – Gabriel & Day One

In Uncategorized on April 17, 2014 at 11:13 am

Gabriel took his first colchicine pill this morning. It’s a little purple pill. It’s weird to think how much hinges on that little thing producing huge results. It reminds me of something Gabriel shouted out once, while trying to wrestle with his older (and much bigger) brother, Ben. Keep in mind this was before I knew he had a heart defect. I probably would have offered him a coloring book on the history of non aggressive play, with some soft and non threatening crayolas, had I known before they tried to do all of that play wrestling that brothers do. But I remember it so clearly when Gabriel was standing up and trying to get Ben into a mock head lock. Both boys were laughing so hard, and through the laughter Gabriel shouted out ” I may be small, but I am much bigger than my size!”. Those words were so big to say, as Gabriel has always been much smaller than his older brother despite how close in age they are.  I am hoping that is the case with this  little purple pill as well. I am hoping it is much bigger than its size, because it has a heck of job ahead. I am pretty sure Ben let Gabriel win that day, and I hope that little pill helps Gabriel win again.

When the Rheumatologist first told me about the colchicine, he told me that he had used it in only two other children with pericarditis, and without good results. He went on the state that he had just recently read an article in the New England Journal of Medicine, that says colchicine had showed promising results from preventing/reducing recurrence when used with Prednisone. What they are doing, is keeping Gabriel on the prednisone, and starting colchicine at the same time. He will taper off the prednisone over the course of weeks, until he is on colchicine only. Then we wait. Typically Gabriel starts to get sick within 2 1/2 weeks after stopping prednisone. If he can maintain on the colchicine, then that little pill is doing great big things. If not, then.. well, surgery.

When the Rheumatologist told me about the drug, he gave me a choice between that or methotrexate. The pros of colchicine are that it works much quicker, and Gabriel really needs to start getting better sooner than later. I was concerned that he hadn’t seen promising results though, and I needed more answers. Someone forwarded the report to me, and I was able to find some more after I Googled the study. I had questions about the study, so I emailed one of the investigating physicians in Italy, and asked a heap of questions. I was really worried he might not email me back, but within the day, he answered.

We exchanged emails back and forth for a few days, and he was able to answer my concerns. I started asking as many questions to cover all the basis I could. I wanted to know how many were teenagers, how many had underlying health issues, and so on. Things I felt I needed to know to help me make the most educated choice for Gabriel and might give him the best chance at feeling better, and avoiding surgery. The investigating physician stated that colchicine is worthy of adding to his prednisone treatment, so this seemed to be looking like this might be the medication worthy of a try. Even though the Rheumatologist hadn’t had promising results in the past, we all know Gabriel doesn’t seem to respond typically to a lot of things, so maybe he is the one patient that will turn this around. That is my hope, anyways.

So here is to little, but big things, today.

 

(Gabriel and I, 4-2014. I have no clue why he is squinting. When I asked him why he was, he couldn’t remember either)

Image

 

My Big Fat Life – Roar

In Uncategorized on December 29, 2013 at 12:34 am

Life changes when your child is sick. It really changes a lot. Last June I was driving in my van, listening to the radio and feeling pretty good about life. I remember that day specifically, because it was the last day I was truly genuinely at peace. I remember thinking to myself “My kids are good, I have a relationship with someone I adore, school is good.. life is good.” I felt a true peace in my life. I truly thought I was on a good path to things finally settling down in my life. Today, my life couldn’t be further from that moment.

It does not escape me that I have a lot to be thankful for in my life. While ill, my son is still facing all of this with such a courageous spirit and he is here to hold. All of my children spent Christmas with me, my oldest son is home from the military and his health is well. There is a lot to be thankful for. However, extended relationships in my life seem to be struggling as I learn to adjust the changes in my life. It’s not easy. Every day seems to bring a new change, and I am not always sure how to carry it. Uncertainty is not something I do well with, yet it is something I have had a lot of thrown at me. You would think I could catch it like a football and run for the touchdown, yet I stand there with the damn thing, in center field and brace myself for the tackle. While I am not literally being tackled by a group of men in tights, if this is what it feels like, then keep the game of football to the NFL.

Today I spent a little time looking for a song that expresses how I am feeling.  I found nothing. I can’t be the only person on the face of this earth that feels like they are pulling out all the stops to keep their shit together standing strong while a bazillion tears fall. Yet that doesn’t even begin to embrace the scope of what I am feeling right now. I am feeling scared, strong, tired, ready to catch the ball and terrified as it comes barreling at me. Cripes, am I an Alanis song? Alanis is pretty cool, but right now I would love to channel my inner Katy perry lyrics (side note, I am adding to see her in concert from the floor, on to my life list. I seriously have found her lyrics seem to resonate with me this past year).

Roar.

One always hopes that people will stand by you and change with you, as the changes come. It doesn’t always happen though. Those who knew you before the event that changes you, expect you will somehow continue being the same person despite the events that took place, and those who meet you after just think you cry way too much. On the inside, I am the same person, but yet I am not the same woman at all. Things I never thought of before, now take a whole new priority. That five minutes I have free, are a treasure. If I happen to spend them talking to you, I would hope you realize you are special to me if I share that time with you. Yet I also know five minutes to other outside of my house, seems like a drop in a very large bucket. Sure, it’s not a Hallmark card, but to me it is the biggest and it means a lot. I don’t have the time to do a lot of the things I did before. It doesn’t mean I don’t want to, it just means that at this time there are other things I need to focus on. I can’t explain that enough. Yet I know that to even try to explain it feels so empty. I just don’t think people ‘get it’ until they have been there. Forbid anyone should be there.

If you have people who stand by you, and support you regardless of the changes, count your blessings. It’s not an easy place to stand for me, and I know it isn’t for them as they watch me cry and listen to me talk it out when I need an ear. But if you have it, count your blessings. It’s during these times you come to realize who stands with you, who demands from you, and who just quietly reaches out and takes your hand without reservation or expectation. It’s not an easy revelation during an already stressful time in your life… in my life. I am learning though, and most importantly I am learning that I am much stronger than I usually give myself credit for and no matter the football thrown at me, tackled or not, I am going to at least give it my best to run for a touchdown. Either people in the stands will cheer me on, stand up and walk out of the stadium or be a cheerleader on the field. Either way it won’t change the fact I still need to run towards my goal with the ball thrown at me, and do it with the most energy and courage.

I only pray if men in tights ever really do chase me in the literal, I am on the set of a Mel Brooks film.

Anything else would just be awkward.

Really awkward.

My Big Fat Life – Thank You To The Zac Brown Band

In Uncategorized on December 20, 2013 at 1:05 am

Zac Brown Band,

Thank you. Today you extended an act of generosity that is much bigger than I think you can begin to realize. You made a difference. Here… Let me share what my son wrote on his Facebook this evening.

I have no words right now… I requested a small scholarship last year to request a new guitar from the Wounded Warrior Battalion to try and get a better quality guitar to play on for when I was finally back home, and after it being over a year I had sort of given up on it. Today, about 5 minutes before I Was leaving the house, my Dad knocked on the door and said I had a visitor, so I stepped into the hallway to see that I was actually looking at a Sgt I knew at the bn there. He was holding not 1, but 2 guitars, both he said was from the Zac Brown Band. One is an Ltd XTone 1 piece electric/acoustic that had been used at a concert and signed by the band members, and the other a brand new unused standard Gibson Les Paul electric guitar. The band members also want to try and meet me when they come out this way next. I still don’t even know what to say, but the fact that they received the essay I had to submit with the request for the charity organization I thought I was submitting to turned out to be a huge plan that had to have taken so many logistics and planning that I couldn’t even imagine. Thank you so much to those involved in the process and for making what I thought a dead hope become something more special than I thought.”

My son used to play the trumpet until the surgery left so much nerve damage that he can no longer play without pain. For such a musically gifted young man, I can not begin to imagine how that has changed his life. Music has always been such a big part of his life. But today you did something that will live on in his heart and the hearts of the people who love him. Thank you for that. Thank you, thank you, thank you. Someday I hope I can give you a hug and say those words to your face, but until then just know that tonight there is a young man who is so beyond moved and people who are giving you a high five for being just so damn kind.

Sincerely, A Mom

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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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