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Archive for October, 2013|Monthly archive page

My Big Fat Life – Life

In Uncategorized on October 26, 2013 at 7:57 pm

Dear Life,

I would really appreciate it if you would just slow your shit down for a moment, and let’s take this one situation at a time, okay?

Sincerely,

Someone who really is only one person

I don’t know if life got that memo, but it’s ignoring me if it did.

There is so much going on. I don’t even know where to start.

G:  He took the last of his medication recently, and we are waiting to see the cardiologist for a follow up echocardiogram. I am holding to love right now, and believing that this last round of medications is all he needed to get past the healing process.

It’s really forever changed my life, having G get so sick after his operation. It forever changed me, just seeing my son in ICU and just watching go through the healing process. In some ways it has changed me for the better, and I am certain there are people who will tell you it has also changed me in ways that they don’t like. For one, I am emotionally over spent a lot of the time. Most of my time is trying to manage the day to day concerns I have, and still trying to find that coveted time to myself that everyone tells me to take, but no one likes when I do. I don’t mind that I don’t really have time to myself. Children grow way too fast, and heaven knows I am so happy I have those babies in my life. Some time to decompress and not always being on heightened alert, would help though. Maybe some time to just listen to my thoughts and work through them, than always trying to drown them out because I feel so overwhelmed the moment my mind starts talking. Yeah, that would be a really nice thing.

Then there is the Avonte Oquendo case. Can we say terrifying? I can’t tell you how many times I have gone to the news to check for updates and see how things are going. It’s not that he is just a missing child, he is a missing child with Autism. I have a child with Autism. It’s a terrifying thought that any of our children be in a place they can’t fend for themselves. My heart goes out to his family, and I want him found yesterday. Weeks ago. Moments within him running out of that school.

Things at my sons school isn’t going so well, and it’s come to my attention they aren’t following his IEP again. Not really a big surprise, yet now they are violating it in ways that put his safety in jeopardy. I am not even sure which way to turn to get things taken care of, yet I can’t ignore it. I won’t ignore it. I need to make as many calls on Monday as I possibly can, and hopefully someone can help. If there is no one, I may have to start looking at homeschooling my son. It is something I am prepared to consider and ready to do, but I would really prefer to have him have access to the services he has a right to. I want him to grow and learn in a setting that helps him socialize and develop life skills to help him through his life. Yet if the school can’t keep him safe, I don’t have a choice.

I can’t afford an attorney, before anyone suggests. It’s sad, that it costs so much money just to advocate and have people do the right thing.

I feel disjointed somehow. I can’t even put a finger on it. Maybe it is because I feel like I am being pulled in a million different directions and I only have two hands. Sometimes I have to vision a pile of laundry sitting in the middle of my room, and the only way I can start to fold it, is to begin with the shirt on the top. I am trying to list the things of great importance, yet they are all things of great importance. Instead I try to count my blessings, because there are so many. I know there are. I have so much to be thankful for, they aren’t cancelled out by the fires I need to put out. I would just love to put a fire out and have not sit and smolder, just waiting to start burning again the moment I get the next one under control.

Perhaps this is just life, and I know it’s no different for me than it is for others. I just need to feel like I am getting a handle on things, before another things comes along. I was really thrown off when I heard Gabriel needed surgery, and I haven’t been able to find my balance since. Just writing this all out feels scattered, yet I know I writing it out helps. It is supposed to help. Okay, it does help.

In lighter news, as I write this, I look down and I see a toy giraffe that the boys used paper towels and tape to make a set of pajamas for. It’s things like this, that make me smile and feel full of hope. A simple act of childhood that they will most likely not recall when they are 24, and the fact they are just so funny and full of imagination, inspires me.

I am not sure how to end the blog tonight. It’s just such a rambling mess that I should probably leave it as awkward as I came into it.

Narf.

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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.