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Posts Tagged ‘blogger’

My Big Fat Life – Moving Sunsets

In blogging, changes, happy, Life, Love, parenting, smokers who suck at being humane, women on August 17, 2015 at 10:57 am

The past few months of living where I do has become a nightmare. I can’t really get into the details of it all right now, but it’s become a need to move.

I have often debated whether I should move, despite the fact I hate the town I live in. I always come back to the fact that I need to stay since Gabriel has all of his specialists up here, and his health is more important than liking where I live, so I have stayed.There have been some good things, but for the most part it’s all been a struggle for me. I personally like Portland proper, and had I moved into the city, I would most likely have stayed. But I didn’t, and I’m not.

This whole issue with the area where I am living now has forcibly uprooted me, and while a pain in the ass and beyond expensive, I have found a place to go that I am finally looking forward to. I can’t say where I am going exactly, but I can tell you that there will be sunsets involved.

I really miss the sunsets.

It’s been a really long time since I ever thought about the fact that I lived here with my ex, and honestly if I even thought about her being in my apartment, I would feel as though she was a stranger invading our space. I can’t even imagine having ever even dated her, let alone having entered into a partnership with her. It just seems that long ago, and while I long ago threw away any of the things we shared, down to the towels, it really does seem like the boys and I are the only ones who ever lived here. But in the back of my mind a part of me feels like this is the final dumping of anything she touched, and it’s a good thing in every way possible. It feels like a closure in so many ways, and yet it’s been a tremendous growth in so many others. I leave with that, and it makes it all worth it. If everything I went through was needed to bring me to this moment in my life, I would do it all over again even knowing what I know now. Moving up here has been the passage I needed to walk in order to get where I ultimately wanted be, and for the first time in my life I feel like I am closer to being where I want to be than I ever have been. It’s a pretty amazing thing and not as terrifying as I thought it would be.
I have just a few days left here in this place, and while it’s my typical to write before I move, I am not sure I want to do that here. I think this whole blog has chronicled the life that has taken place in this apartment.  While not always easy, so much good has happened here too. Beyond the pain and the tears, laughter and love has happened within these walls. When I leave, there will be no tears of resentment or fear. No feelings of being duped, manipulated or taken advantage of. I don’t feel like I am packing my boxes just to move and jump on a land mine in the name of love. There is nothing left to reflect on. Just love, peace and being stronger to handle the changes that life continues to bring.

I guess in a way this is my personal sunset.

Perhaps it’s time to start catching those sunrises.

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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 – Eleanor to Aisle 14 Please!

In Uncategorized on November 16, 2014 at 11:47 pm

A couple of days ago I was really having a tough day.

Who am I kidding? I have had a tough week.

I went to the store a few days ago to make a quick run for cereal after an appointment. It was a typical morning around my house. Gabriel was having side effects to his medication, I was PMSing, my new relationship wasn’t going so fabulous, I had an appointment, and I was out of cereal. You know….. a typical morning.

As I left my appointment, and made it to the store, I was already listening to music in the van that was audibly pouring salt into all the wounds I was feeling. Why is that every stupid song on the radio seems to know exactly when to prey upon my funky moments?

By the time I made it to the grocery store I was already trying to figure out how I could just get in and out, go home, throw the blankets over my head, and just sulk under the covers until I was ready to emerge when life was suddenly full of blue skies, and pizza.

I grabbed a cart and begrudginly worked my way over to the cereal. As I eyed the sales on cereal, I noticed a little old lady next to me. She was shorter than my 5’5, and had some serious earrings on that looked like saucers stuck to her lobes in comparison to her small frame. She was going about her business scouting out her cereal options as I glanced her way out of the corner of my eye. I quietly studied her for a moment, and wondered what her answer would be if I asked for her answers to longevity, and sanity. I wondered to myself quietly what her secret wisdom was. Did she regret losing time stressing over things that seemed so life altering when she was younger that turned out to really not be much in the bigger picture of life? I pondered for a moment actually asking her my questions, and then realized how awkward it would seem to seek wisdom on aisle 14 over the latest cereal sale. So I pardoned myself as I scooted past her with my cart as  vision settled on the big box of Cinnamom Toast Crunch in front of me.

As I scooted past her and mumbled my pardon, she spoke. I walked a few steps before I realized she was speaking to me, and I looked back towards her. She repeated  her question “What’s wrong sweetie?”. I stood there unable to speak as I felt my eyes starting to burn and swell with all the frustrations, disappointments, and fears I was feeling that morning. I struggled to formulate the sounds to give her answer to her question as my worries burned their salty path over my cheeks. I think she could tell I was struggling to answer her question, so she instead asked me my name. I softly uttered my name with a broken voice as I reached for a box of cereal.  “What’s wrong?” she asked me again. I replied that I was just having a really tough morning. I didn’t really want to unload my life to a stranger on aisle 14, and after the trouble I had saying my name through the tears streaming down my face I really wasn’t even sure if I could even find the words if I wanted to anyways.

As she looked at this woman who was now holding a box of Cinnamon Toast Crunch with tears streaming down her face, she quietly said to me “It’s going to be alright. Whatever it is, it’s going to work out. I will pray for you”. She meant business, because with saying that, this woman in aisle 14 starts praying for me. Right there. I wasn’t quite sure what to do. I know how to pray and all of that, but I was just caught off guard that this little old lady with saucers on her lobes was there in aisle 14 taking a moment to just be kind to a woman who was crying while clutching a box of cereal.

She finished her prayer, smiled, and repeated her belief that everything was gong to be okay. I thanked her, and proceeded to grab another box of cereal off the shelf before quickly walking away. I made it a few steps before I realized I didn’t get her name, so I turned to walk back over to where she was, and asked her name. “Eleanor” she said. We shared some plesantries, and then I told her I was just having a tough morning in a space where things just seemed a little big. She spoke with me for a few moments, advised me to “Let go, and let God” (while I have heard that saying what feels like a millions times, I am still not sure what it means exactly), I thanked her again, and worked my way to the check outs.

While life still felt a little big a few days ago, the whole interaction seemed to put a few things in perspective for me. First, I should never really go to the store when I’m having a funky morning because I always buy the crap cereal that I know the kids shouldn’t eat, but I know I am going to eat as well.  Secondly, that the simple action of asking someone if they are okay makes the big world seem a little more personal.

Gabriel is going to be on a different dose of his medication, I sadly had to let the new dating relationship go (I will admit that I took that decision pretty hard. It was a part of my tears that morning. I really liked this person), and the cereal I bought that day is now gone. While those things don’t seem as big after taking a few days to step back from it all, I hope I have learned a few things about myself in the midst of it. I am not sure exactly what the knowledge gained is yet, but hopefully when a life situation rises that needs to pull out that lesson, I will recognize it.

But I can tell you that Lucky Charms still rock as much today as they did when I was kid, and aisle 14 gave me more than cereal that morning.

Wherever you are Eleanor, thank you.

MY Big Fat Life – Tolerance, Acceptance, Pray Away The Gay, and Facebook

In Uncategorized on November 6, 2014 at 12:20 am

Recently I was unfriended on Facebook.

Before I start to sound like a whiny teenager (soory teens, but you really do get freaked out about this stuff) I have to say this was someone I considreed a realy close friend at one time. Since unfriending on social media is the new “I don’t want to be your friend anymore” talk, of course it is going to sting a bit.

The reason why I was unfriended is what really gets me though. I had posted on someones page about my journey this past year. She (the friend) somehow took it as me saying you can *pray away the gay*. Gosh how I despise that saying. I wasn’t even saying that. In fact, I never even said that people can “pray away the gay”. However I also won’t minimize the role my faith has served in how things have changed for me this past year. But that change was between God and I, and a change in my faith, not some act of praying anything away.

See, I know how that “pray the gay away” thing works. It doesn’t. At least not in the traditional way the church teaches. I’ve been there. I have spent countless hours seeking pastoral counsel, asking for prayer at the altar, talking to people, praying for God to take the thoughts away, to remove the attraction, to not send me to hell because I couldn’t seem to control my thoughts when I saw an attractive woman, and pretty much everything else I could think of to “pray away the gay”. I know how hurtful that saying can be, and I know the damage it can do.

None of the above mentioned acts changed who I was. Of course they didn’t, because I was going through church approved actions expecting a result. I was in desparate places begging for changes, change of mind, change of desire, change of who I was. But none of those things changed who I was, and unless you have been there you can’t really understand that conflict between someone who identifies as a lesbian, and their faith. You can’t understand that pain that comes with it; the feeling that somehow God just doesn’t care and tossed you to the dogs to fight this conflict on your own. It really bothers me that someone could even think they have the right to challenge me on my own personal journey from where I have been, to where I am.

Let me set this out there right now. I don’t know where people stand in their own life. I can only say this is where I am, and my change came from a very quiet place between God and I, and I won’t deny the faith factor because it makes someone else uncomfortable or feeds into their need to define me based on their experiences.

I understand there will be people who will think I am really bi, or wasn’t even a lesbian at all because of this. But that isn’t their right. It isn’t my right to define you, and it isn’t your right to define me. I have no desire to even start to tell people how to *pray away the gay*. So please don’t point fingers and demand that people accept and tolerate you and your choices, while choosing to define and accuse me for living mine. Especially if you have never lived a majority of their life struggling with the idenity of your sexuality, and faith. You don’t get it.

Someone said it perfectly to me recently. He said ” I’ve found that intolerant people are just that. Usually in most aspects of their lives… So all you really lost I suppose is a person who thinks it’s ok to be them but it’s not ok to be you.” His words have stuck with me this past week, and made a real difference. It’s so true. In fact, it’s so perfectly said I don’t even need to elaborate.

With that, I will just leav this here. This is the song that came to my mind when I thought about writing this blog. I was going to post something else, but I came right back to this. I think it’s because I am not angry, I am more hurt than anything. I think this song perfectly reflects the place where I am writing this from. This life has too much sepration amongst us all. It would be such a bettrer place if we could somehow find a place where we respect each other for who we are, and not what we are.

Peace.

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 – Welcome Back

In Uncategorized on August 5, 2014 at 5:08 pm

As many of you know, I chose to close my blog down because of the harassment I was receiving from someone who refused to honor my requests to leave me alone, and to refused to follow the advice of law enforcement to leave me alone and *unfollow* my blog (WordPress staff thankfully stepped in and removed them from my list). Ignoring all requests, they then decided to take it a step further and try to comment on my blog with claims that were only half truths and complete falsities. It gave me more than enough to seek libel in a lawsuit against this person, but after taking some time to think about it, and speaking to an attorney, I have decided to just let this person continue with the slander and lies. I figure if I let it go long enough, they will continue with their inability to stop harassing me, and give the courts and law enforcement more than enough evidence. I move on and continue my life, and they just destroy themselves.

Thankfully the American Embassy and LE officials are aware, and have become involved as well. I received note two days ago of the progress and with the support of the Embassy and LE, in addition with WordPress, I can now open my blog and get back to sharing the things that are really important. I have disabled comments for a bit though, as to continue to sift out any comments left should it start again, so they can be forwarded to law enforcement and all of officials that are keeping note of anything that might continue.

If you find yourself in the following, please stand up and speak out. Speak to law enforcement. Seek help….

– Unsolicited attention, emails, phone calls or continued harassment from someone, I encourage you to talk to everyone who will listen. Make sure they know who the offender is, and find out your rights.

– Keep all emails and records of communications. If anything is sent to your home, make copies.

– Talk to attorneys, officials, local law enforcement. Let them know the patterns. It is vital to keep people informed, should anything happen.

– Tell your friends. It might be embarrassing, but remember you need to let people know. Show their photo to those around you, in case anyone sees the person hanging around your home, and encourage them to call the police if they see them at anytime.

– You can disable their ability to send you emails. Well, at least your ability to see them. They still might attempt to send you emails, but Yahoo won’t allow it to come into your mailbox, spam or trash folders. Keep all previous emails though, and file them.

– Anytime you ask someone to stop contacting you, and they continue to contact you or refuse to listen to LE (in this case, they were even asked by LE unfollow my blog and refused to honor those requests), it is harassment. This is against the law. People who continue to contact you after you have asked them to stop, or listen to LE, display inability to control their actions and should be considered a potential physical threat. Do not ignore this, or simply put up with it. Protect yourself.

You wouldn’t allow someone to do it someone you care about, so don’t allow someone to do it to you.

Stand up, and stand strong.

Much love,

Me

 

 

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 and His MRI Results

In Uncategorized on April 8, 2014 at 5:30 pm

I got the call tonight. I will spare you the round about details and lack of planning (or even that the cardiologist yawned during the conversation), and get right to the point.

The pericardium sac is thick and stuck to places on Gabriels heart. What does this mean? Well, as it was explained to me, the sac gets thick and starts to adhere to the heart, much like a spider web. That is not supposed to happen, and this is what is happening to Gabriel. I am calling his regular Cardiologist tomorrow to set up a game plan, and speak to the Rheumatologist to discuss medications. There is one, Colchicine, that might help. If it doesn’t, and the sac gets even thicker and adheres more to the heart, then they will have to operate and remove the sac from his heart.

The cardiologist that I spoke to tonight, is the one who did the MRI and I’m not a huge fan. Up until recently, he has questioned every time I have taken Gabriel in, as to whether or not Gabriel is even having problems. I am hoping the MRI has now convinced him that Gabriel is indeed not well, and now we need to get super proactive to figure out what to do from this point.

So… here were a few of my questions for him tonight, followed by his answers:

Will the medication unstick the portion of the heart that is already adhered? He doesn’t think so.
Will it adhere more? Possibly.
Can the sac completely adhere to the heart and constrict it? Yes.
What will they be doing to monitor his progress? Just wait to see if the medication helps and prevent another relapse.
Will they know if it’s adhering to the heart more, based on symptoms? No.
So then why won’t you be doing a test to keep a check on things? (No definite answer given).
Why did his ANA levels test positive? (This can indicate Lupus) Not sure, it can mean a lot of different disorders so we need to talk to the Rheumatologist.
Have you talked to the Rheumatologist? No.

Can anyone else see my frustration? Tomorrow, I will be speaking to his Cardiologist and hopefully get a game plan going. I also plan on making some calls to other children’s hospitals to see if they have any experience in this condition. I’ve got to make sure I am not leaving any stones unturned, in trying to find answers to help my son.

On a better note, I feel much more grounded today after having a mental day yesterday. I am taking everything one step at a time, and choosing to address the things I can do something about, and let go of the shit I can’t. I am in a much better frame of mine today, to do just that. You would think with this news, I would be in a much worse place than I was yesterday, but I can’t help but feel that at least we have answers, even if we don’t know why it’s happening to him. At least we know what the result is, and can address it sooner than later. That perspective makes me feel better, and that is what I am trying to hold to.

(Gabriel while waiting for his MRI yesterday)

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