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Posts Tagged ‘son’

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)

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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)

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My Big Fat Life – Isaac Bear

In Uncategorized on April 19, 2014 at 10:29 pm

I wanted to take a moment and explain the red bear that often appears in the photos of Gabriel. The bear is Isaac Bear.

As many already know, Gabriel had an identical twin bother, Isaac. When I was 20 weeks pregnant, it was discovered through ultrasound that I had twins. During that ultrasound, they also told me that Isaac was not alive, though they were essentially connected by one umbilical cord and Gabriel’s heart worked for both of them. I carried Isaac to term with Gabriel, since they were in their own sacs. After birth, Gabriel was in the NICU but was released after 10 days later, with a clean bill of health, according to the doctors. Of course, we would find out that wasn’t the case, after all.

A couple of years ago, Gabriel was really having a hard time sleeping. I took him to the doctor and after recommendations, I tried melatonin and a sleeping aide. Nothing seemed to work. He really struggled to fall asleep, and stay asleep. One day I was looking for some things, and came across Isaacs box. The box holds photos, and things from his funeral, that I have kept. Dried flowers, the program, and things like that. I had brought the box out and shared it with Gabriel for the first time. When we went through the box, he came across the red bear. I had bought the bear originally, as a Christmas ornament to hang on the tree, in a way to keep Isaac with us. Gabriel asked if he could have the bear, and of course I said yes. I kid you not, that night Gabriel slept through the night, as Isaac Bear sat on his bed. Ever since, Gabriel has never struggled with insomnia, the way he struggled with it prior. Now Isaac Bear follows when comfort is needed. Gabriel has told me that in a way it helps him feel like his twin is close by, and that somehow gives him a sense of comfort. I am very thankful for that bear, and the connection to Isaac that it brings for Gabriel. Anything that gives Gabriel a sense of comfort, especially now, rocks my world. I love that bear.

I will share more about Isaac another time, but for tonight I just wanted to write about the bear.

(Gabriel with Isaac Bear in ICU shortly after his open heart surgery, 8/8/2013)

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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)

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My Big Fat Life – Gabriel’s Treatment Plan

In Uncategorized on April 16, 2014 at 3:51 pm

I finally got a call today. As you know, the cardiologist brought the rheumatologist onboard, so that he could manage Gabriel’s medications to help with the PPS (Postpericardiotonomy Sydrome) flares. Since PPS is really the same as Percarditis, only caused by surgery, the rheumatologist manages those medications with more knowledge than the cardiologist.

The rheumatologist told me that they have decided to prescribe the Colchicine, and give it a try, starting tomorrow. He is sitting in conference with all of the cardiologists tomorrow to discuss what happens if the medication doesn’t work, but today Gabriel’s cardiologist and the rheumatologist agreed that the very next step will be surgery to remove the pericardium, if the Colchicine doesn’t work. I realize I haven’t explained much about the Colchicine, but I think I will explain that in the next entry. It’s an interesting drug that recently had a study published in the NEJM.

The rheumatologist also explained that the initial ANA testing that came back, was screened further, and tested completely negative for Lupus, so that is a real positive. His vitamin D was extremely low (an 8), and his liver tests show a slight increase in his numbers. He has gained 30 pounds since his surgery, all due to the prednisone, no doubt.

I am so ready for my son to be healthy again. I desperately want this medication to work. I just don’t want him to have to face surgery again. Yet I know that if that is what it takes to have Gabriel feel better again, then that is what they have to do. I just want Gabriel to feel like himself, and not be ruled by all of the pains he feels when he has a flare.

So tomorrow is the day for the new drug, and here is hoping it is the key to help Gabriel feel good again. It’s one of those times you wish good thoughts really could magically touch a situation and be the pixie dust to transform everything it comes in contact with, to rainbows and all things beautiful and right in the world.

Thankfully, Gabriel is feeling good currently. At least the sound of the conversation currently taking place while I type this out, sounds as normal between siblings as it possibly can be. Gabriel is currently advising his brother Ben that maybe a getting a girlfriend would make him a nicer person.

Ben: “Why wouldn’t girls like me? I am hot.”

Gabriel: *fits of laughter

 

(Gabriel having his IV removed after the MRI scan last week)

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My Big Fat LIfe -The Perks of Being Me

In Uncategorized on April 15, 2014 at 3:41 pm

I’ve been waiting for doctors to talk to each other, and decide what the game plan is, since last week. I have called every day, and at times I have even spoke to the doctors themselves, who promise me they will speak to each other, and then the next time we talk.. nothing.

Today I spoke to one of the cardiologists and made it clear that I am waiting for them to hurry up and get it together, so we can get Gabriel where he needs to be. I am giving it just a couple of more days, and then I am just showing up at their office and waiting to see someone. This is ridiculous.

In the meantime, I just feel the need to write today. It’s been a pretty busy few days, and throw in the fact that my phone landed in a puddle of water today, I think I am ready for a hug and some coffee. The upside today, is that Dark Horse Comics sent a package of graphic novels to the house, as a gift, and is giving us a private tour of the campus in a few weeks. I really appreciate the extension of kindness.

I was looking over my blog last night, and read the entries from 2012. I measured where I am now, compared to where I was then, and I feel like I have changed a lot as a person. Some of it holds pretty true, though 2012 seems to be the year that I had a lot of awakenings.

I also realized it’s now been three years since I started this blog. The anniversary of it all just escaped me. Life has just moved on that much. That is really exciting to me, considering there was a time I was scared I would never be able to feel whole again. I will admit there have been times I have considered tearing down this blog. I look back at the entries of 2011, and I am just so embarrassed that I was that sad over a relationship that was really nothing more than a disaster. But then I get an email from someone else who is in that place, where I was in 2011, and I remember how much it meant to me to know all those things I felt, and how isolating they were. I don’t want others to feel alone, and I hope they read past those entries and see that life does move on. I guess I just don’t want people to read it, and judge me on who I used to be. I want people to get to know me for who I have grown into. Especially when dating is in the picture. People have the advantage of reading my life, and that is really exposing.

So I thank those who have been reading my journey these past three years. I especially wanted to thank those who sent me texts, emails, and support when I recently revealed that I am interested in dating men, in my blog “I Learned”. I was terrified to write out that truth, but I knew I needed to.

In closing this, I wanted to share a quote from a movie I have playing in the background while writing this. “We accept the love we think we deserve.” – The Perks of Being A Wallflower. Take that for what it means to you. To me, it means staying true to those things I wrote in Jan. 2013. I hope whatever it means to you, it means that you find good things from, and for, yourself.

 

 

 

 

My Big Fat Life – Gabriels Heart

In Uncategorized on March 29, 2014 at 7:51 pm

The Cardiologist spoke with me the day before yesterday, and after speaking with the surgeon, they  have finally decided to do a CT Scan or an MRI on Gabriel, to take a closer look at things and make sure they aren’t missing anything. I am both happy they are finally doing this, and terrified they might find something that will require another surgery. They are supposed to call me Monday to schedule this, so I will be sure to write an update soon.

In considering that they might have to do another surgery, I go into an instant mode of fear. I am really struggling with the fear of having to watch my son go through that whole process again. It just makes me so sad for him. I am trying really hard not to borrow that worry, but I have to prepare myself for the possibility that this could happen.

 

My Big Fat Life – Hallways

In Uncategorized on March 27, 2014 at 12:02 pm

Well… I write this as tears spill from my eyes. Gabriel is sick, again. We made it almost 3 weeks this time before the pain started. I took him to the cardiologist the day before yesterday, and an echo confirmed the fluid has started to build up around his heart again.

I can’t begin to describe how devastated I am.

Yesterday we saw the Rhuematoligist who put him immediately back onto Prednisone. He wants to add another medication to the mix, but is allowing me some time to research both of the ones he mentioned, since they will be a longer term treatment. One is a proven treatment (Methotrexate), though there is not a real traditional treatment for Postpericardiotonomy Syndrome. The other (Coholchicine) is showing some help in treatment though it is a fairly newly used drug for what Gabriel is dealing with. I am just at a loss trying to make sense of everything in the midst of feeling just so tired.

Yesterday the Rheumatologist started to talk about some longer term options, and I asked him if we could have that conversation in the hallway. As we stepped out into the hallway and he started telling me his thoughts, I realized that a majority of my conversations about Gabriel have taken place in a hallway. When the Dr first told me that Gabriel had something wrong with his heart, it was in the hallway at Doernbechers. When the news isn’t good, the conversations take place in the hallways outside the room of where my children are sitting. I can’t begin to count how many tears I have shed in the hallways between the hospitals and offices of the doctors he is seeing. When he had his echo this last time, when the Cardiologist said he saw fluid, I quickly excused myself and stepped into the hallway where I proceeded to lose my shit. The Dr stepped out and put his arms on my shoulders as he tried to comfort me in the moment, but even now I struggle with tears and how disappointed I am. I really, really wanted this to be his time to be healthy and not have to deal with anymore of this. I am trying to learn how to proceed with cautious hope, because each time I hope, I seem to really take it hard when things don’t work out.

Gabriel asked me if he was going to die. I can’t even begin to tell you just how hard it is to hear your child ask you such a big question. It just hurts to know he even considers this as a possibility. Yet, I have feared the same thing so many times.  Today he got tired of it all and asked me why he was given a difficult heart, and why God would do such a thing. How can I give answers to something I have asked God myself, so many times?

I need my son healthy. I want my son healthy. I want him to never have to worry or even think about his mortality at the age of 13. I need my child to have a childhood full of happy memories, and life. I need my son to have something positive  happen in his life right now. I need my child to smile.

I need some good news. I need kind words. I need hugs. I need people in my life to remember that I am not always as strong as they think I am, and sometimes I need it recognized that I have moments I feel very weak and vulnerable. I need to keep focusing on the positive and remember that there are people doing everything they can for my child. I need to feel protected right now.

Sweet Jesus…… I need to feel protected right now. I am not even sure what that looks like, but I know that is exactly what I need right now.

I need my son to heal.

I need answers.

I  need to spend less time in hallways.

Gabriel Echo 19

(Gabriel during his echo on March 19th, the one before last)

 

 

My Big Fat Life – I Learned.

In Uncategorized on March 20, 2014 at 6:39 pm

Yesterday Gabriel had another echo to check things out, since it was his two week mark of being off of the prednisone. If we can make it a few more weeks without a flare, then his chances of having made it over the bump, may have finally arrived. I’m still holding my breath a bit, but I will be so happy to finally take a breath in and let it out. That means I haven’t unpacked the hospital bag just yet, and keep it ready to go at a moments notice.I have learned a lot about what it means to be a Mom to a child who has struggled with his health. I learned that it takes a lot out of you, but it also teaches you just how important your role as a parent is. It’s more than peanut butter smeared on the counter tops, sibling rivalry, long nights, and early mornings. It is a special place of your life that carries so much joy in the midst of the battles, where you realize the strength of your children teaches you more than any parenting book ever could, and wherever your children go you will always be as well.

Since I have been relaxing a bit, I have been reflecting on what I have taken from the last 7 months. So much has changed about me. Nothing quite shakes your life up and forces you to reevaluate every thing you stand for, other than standing by as you watch someone you love struggle as a machine breathes for them. Suddenly in that moment you are faced with every truth, every moment you let slip by, every time you didn’t bend and compromise when you should have, or bent too far and settled for less than what you wanted in this life.

In the past 44 years of my life, I have seen some pretty horrible things in people. I have been on the receiving end of their bad choices, and I am sure I have hurt people along the way myself. There have been things that happened, that reminded me that I am a lot stronger than I give myself credit for, and things that have brought me to my knees and reminded me just how weak I truly am. The past 7 months though, I learned something about myself I wasn’t expecting. I learned how that it’s okay to be weak while standing strong, and it’s cool to admit that. That opened a door for me to be honest with myself in ways I wasn’t exactly ready to embrace, but I was finding the courage to.

Let me say that something I always prefer not to do, is write about the people I date. I have been asked in the past to write something, or share, but there is always this apprehension. If the relationship fails it’s just documentation of your failures. Once the words are out there, there is not taking them back. You can erase them, you can hide them, you pretend you never wrote them…. but there they are. I don’t like people knowing my secret spaces, thoughts, fears or failures. It’s always kept me a safe distance, and provide an easy escape if things go awry. On the other side of that, I don’t like talking about the break ups for the same reasons. It’s just another documentation of a failure, and heaven knows none of us need that. After all, this whole blog was birthed from a failed relationship. Who needs more evidence that love is difficult? Having said that, I am pretty sure that you have been able to gather from previous posts, that my last relationship didn’t survive the process of my sons surgery and subsequent illness over the last 7 months.

When Gabriel was sick, I stayed with him the hospital every moment of every day. When I wasn’t watching him take every single breath, and keep my eyes on the monitors, I was faced with some hard truths about me. One of those things that would forever change me as a person, is that I have a much different view on what love looks like than I used to. I used to think it was all about compromise and giving in, rather than giving up. God, I am so sick of giving in. For all of the people I have allowed into my life, and compromised for in the name of love, I spent a tremendous amount of time settling for what someone else wanted, rather than what I needed. I learned what I need is consideration. I do not want to be smothered, I don’t want to be ignored. I simply want to be the balance of being considered. There is a lot of power in that realization. This extends beyond romantic relationships. It defines so many levels of communication I share with others. Yes, life is compromise. When the cost is yourself though, that’s one hell of a price tag.

I learned that there is nothing more important than the people you can be yourself around, and still love you. I learned that it’s okay to cry and want to be held quietly. I learned it’s okay to say “no” and hold to it. I learned it is okay to say “yes” and that follow through with action is just as important as the word itself. I learned to not stress over the little battles and to pick up only the big ones. I learned to smile more, and that life is really more worthy to spend with joy in your heart if you can find it. If you find something, or someone, that makes you smile.. go for it. I learned to talk to people more. I learned to hug strangers that are family in the walk. I learned that for someone who loves words, touch is the most affirming and comforting expression to me. I learned that grief can teach you more about love and life, than a single person. I learned that consideration is not the same as smothering someone with attention. In light of that, I learned I don’t like to be smothered with attention. I learned that hope is a four letter word that can provoke anxiety. I learned that instead of hoping for the best, to just live in the now and take the changes as they come while hoping they change. I learned if circumstances don’t change, I can.

 

Most importantly I learned that life is here and now. It’s not planning for 15 years from now, not for a month from now. It is right now. I don’t want to spend the last moments of my life on this earth regretting the ways I wasted my time, or the risks not taken. I don’t want to lose another moment of being afraid of what could happen, and just embracing what is set in front of me. Having said that, I also learned to not be afraid of some changes I found myself experiencing. I learned that in those moments of facing myself, that I am attracted to men and I am learning more about what that means to me.

I also just learned how scary that was to tell you that.

My Big Fat Life – Mariah Carey Just Verbally Hugged Me

In Uncategorized on March 4, 2014 at 9:01 pm

This is my third attempt to write an entry. Each time I sit down to say something I just stop cold. I don’t know why it feels so vulnerable to write tonight, but it does.

Gabriel saw the cardiologist recently, and he says the repair is perfect. I guess it takes 6 months to be able to tell for certain, and Gabriel has passed that benchmark.

Today was his last dose of the prednisone. I am so happy yet so scared. I am happy that he has tolerated this long round, and has seemed to come off the taper well. The true test will be over the next few weeks. I am praying this goes without incident, and perhaps we are finally heading in the right direction.

I am holding to that hope with one hand, and completely terrified to let go of the security of this medication at the same time, with the other. It’s kept him healthy and I like having my son smile again. It’s so nice to see him full of life. It does my spirit such wonderful things. Yet tonight, right now in this very moment, I want to be held. I would love to be gently consoled that things are going to be okay. I’ve been fighting back the tears all day, because as much as I have been hoping for this day, I have been dreading it at the same time. It’s like letting go of the edge of the boat after being tossed from it, to see if  you can swim after all.

Maybe that is why I feel so vulnerable in writing tonight. I feel so naked at this moment. I feel stripped of certainty, and I need clothed with reassurance. But here I am on a Tuesday night, the boys in bed, and I am trying to find a way to pull it from within myself to just keep going on when I would rather throw myself on the couch, cover my head with a blanket, and demand that the world stop for just a moment until I get my reserve. If only blankets could hug, I think I would probably not emerge from my bed until the sun broke the morning.

So weird as I write this, the song Hero by Mariah Carey just came through my speakers. I’d like to think the timing of the song has meaning. I do not by any means think I am a hero of any sort, but the lyrics are a bit of a verbal hug and heaven knows I will take what I can tonight.