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Posts Tagged ‘open heart surgery’

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.

 

 

 

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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 – 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 – Tomorrow Is When?

In Uncategorized on May 15, 2014 at 9:08 pm

A couple of days ago, Gabriel saw the Rheumatologist. As you know, he has been tapering the prednisone every Monday while taking the colchicine.

The plan is to continue the taper, with him going off the prednisone completely by June 11th. He will stay on the colchicine after he finishes the prednisone, with hopes that it will prevent another flare up of the Postpericardiotonomy, and there will be no fluid around his heart. He will stay on the colchicine with no definite ending date, until we see how it works. Typically he gets sick within 3 weeks of ending the prednisone, but we are hopeful the colchicine will prevent that from happening.

June 11th.

June 11th.

This day is set in my mind, and as it approaches I am cautiously hopeful yet preparing my spirit for what might lie ahead.

It’s hard to believe that it’s almost been a year since the heart defect was found. No one tells you how quickly time pushes past when you have a child who is chronically ill. I was thinking back to September when the Cardiologist suggested the surgery to remove the sac of the heart. He (the cardiologist) said to me “But that is way, way out there. We have medications to try first, and that is about a year out”. Yet here we are almost year later from his initial diagnosis, and it doesn’t feel like a year has passed by.

Maybe it is because I don’t even think in terms of making future plans anymore. Every thing is about the here, and now. Maybe that is why times seems to pass so quickly. When you make plans for events that are scheduled ahead, time seems to move so slowly. Now it is all about just making it through the day, and hopefully to the next one, without any events taking place that might indicate the medication isn’t working. In a way it’s been a good change, because I am learning to live in the moment. I’ve always been someone who spends a day scheduling and planning the next day. Sometimes I get so busy scheduling the next day, that I at the end of the day I realize I have spent my entire day preparing for the next. Now, I am learning to live right now. I can’t always do the things I want to do, I am not a rich woman in any sense of the means, but I am learning to appreciate the now. Don’t get me wrong, now that I am working with the kids with online school and the entire burden of daily responsibilities fall on me, I am staying busy no matter what. Just I am learning to embrace the moments where I can. If that is stopping and giving myself 60 seconds to pull my hair back and apply a dab of blush, then I do it. Buying tickets for a concert I really want to see that is months out? Not happening. Katy Perry is coming in September, and trust me, I wanted to go so bad. But not knowing where things are going to be in September, I couldn’t justify spending the money when times are already tough, and not knowing if I would have been able to go or not. But oh man, I would have loved to get a floor ticket and had one night I could just let go.

But here and now, things are okay. Gabriel is handling the taper well (even though that has never been the issue)and he is fine in this moment, and that is what it is all about. Wouldn’t trade that for all the Katy Perry tickets in the world.


 

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 – 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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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 – Here We Go Again

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

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

Gabriel is sick again.

 

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

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

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

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

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

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

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

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

Someday I will wear mascara again. I believe this.

 

 

My Big Fat Life – Gabriel Update

In Uncategorized on October 6, 2013 at 12:14 am

Well, I had been working on a blog that was going to be about how great things have been or Gabriel. But then he got sick. Two bouts of pneumonia and on his second battle against postpericardiotomy(syndrome) inflammation currently, I wish I had a much better update.

I’ve spent fat too many nights in the ER with Gabriel and his brothers, and see the pediatrician far more than I would care to. Yet I have to say that I am touched by the calls from the pediatrician to check in on Gabriel, and the ER staff has been amazing even though I am sure they could do without seeing me as much, as well. The boys have been amazing and supportive of their brother during our middle-of-the-night ER trips that turn into seeing the light of morning, before we get any answers as to why Gabriel seems to be struggling so much.

I am not sure we even have answers, all I know it is really hard to see my kiddo in so much pain when the symptoms begin. The fevers, the pain, the tears that come with pleads to give him something to make the pain stop so he can sleep….. it’s really hard. He is such a beautiful person, and it hurts that someone so young and so cool, should have to deal with anything outside of typical teenage angst. I wish his only complaint was about chores, and homework. I want that for him.

He’s only been to school two days this year so far, and the district has finally approved in home tutoring for him, until he heals enough to try and go back for as long as he can tolerate in a day. For a teen who is really social and loves school, this isn’t an easy thing to look forward to. Today the first candidate for tutoring called me to tell me she wanted to only come twice a week, for 2 1/2 days and I had to tell her that I didn’t think he would be able to handle that much one on one tutoring right now. She seemed to have a pretty big personality and want to keep pushing the matter, but I pushed back and told her she needed to call the school and let them know she couldn’t do it. I need him to be tutored to help prepare him for his return to school, but I also need to keep my home as peaceful and centered as possible.

In the midst of this, I have had a lot of time to think while standing around rooms. One of the things I have been thinking about is the title of my blog. I am feeling less like I need to talk about my big fat lesbian life, and just stick to my life. I am a woman who happens to have a life. Of course I may be over thinking it all right now, or not thinking clearly enough. When my kiddo feels better and I get a full nights sleep again, I will tell you.

That brings me to this.. I am really worried about my kiddo. Just when he starts to feel better, he gets sick again. It seems to be within a two day period. The cardiologist said to me yesterday that he doesn’t know why Gabriel seems to have such “bad luck” with this, and I don’t know either. All I know is that a surgery that was supposed to save his life, has him battling illness, and I really want to see my son who was so full of life and energy. I want to see the color in his cheeks, and watch him run around because it’s impossible for him to stand still longer than half a second.

I don’t know if you are the praying kind, but if you are, please lift my family up in prayer. Gabriel needs complete healing, total healing, immense healing, pure healing… all the healing you can imagine. Gabriel needs it. His brothers, who have been amazing, need peace and worry to be far removed. It’s been difficult for them to watch their brother go through all of this, and watch him hurt with fear when they need to do blood work. I’m working on keeping my mind and heart full of peace, so that the boys can see that and not worry so much. But of course I do worry, and it is hard to see my son struggling so much. It’s nothing any parent wants for their child to have to deal with. It’s not anything the parenting books prepare us for.

I need to head get him up for his next round of medications, and then I need to try and get some sleep myself. Thank you all so much for listening, and thank you for the love and support. It really means a lot… it really does.