petty and spite

They say tragedy makes you wiser. I don't quite know who they are or who deemed them experts in tragedy, but nonetheless, they say tragedy makes you wiser. Even the few therapist I have sat down with since Handsome's passing have held me to a higher, more spiritual level. My friends and family do it too. It's almost like people turn to me as if I'm Gandhi or Buddha. It's like because my son is dead, I'm suppose to know everything now. I'm suppose to be like some 80 year old woman trapped in a 26 yer old's body? 

Losing my son, watching him die slowly, watching him fight to breathe, fight to open his eyes, fight to even swallow his medicine, it didn't teach me anything about life. I didn't walk out of the ER that day, leaving my son's cold, pale, stiff, dead body, enlightened. I haven't moved around the last 2 years with some new sense of spirituality. Visiting my son's grave site does not give me any great, new knowledge. My IQ has failed to increase. I have no insights on the meaning of life. I don't understand a damned thing... about anything. 

I'm not even a better person for it. I'm quite the opposite. And in my pretty little head, I'm rightfully, entitled almost, to be petty and spiteful. I've earned it. 

In one of my many self help books about dealing with the loss of a child, I read that bereavement doesn't actually change people. It heightens their traits. It doesn't create new problems, it just makes their current ones bigger. It doesn't make a happy person depressed or a sober person drink. It makes a depressed person MORE depressed. It makes an alcoholic take another shot. It doesn't ruin marriages. It brings already good marriages closer together. It tears apart already failing marriages. 

Maybe that's why I got a little fucked in the situation. I was never wise. I was never a good person. I've always been naive and a bit... angry. 

Tragedy did not make me any wiser. I'm just more confused. More lost. 

Everyday... Yes EVERY DAY! I have woke up expecting to see my child. As the sun beams through the blinds of my bedroom window and my eyelids begin to feel lighter, I think about the day before me. I think about getting the older two up and ready for school. I plan the way I'll do my daughter's hair and what shoes she will wear with the outfit she picked out. I remind myself that my oldest son forgot to do his homework and we have to rush to get it done before the bus comes. I'll hope the younger three stay asleep long enough for me to make a few phone calls to the bank and to schedule my husband's doctors appointment. I'll fix them breakfast. We will watch cartoons and read books about dinosaurs. All my boys love dinosaurs. We might even go to the park today. I think they'd like to go to the park. I see my 5 year old playing with his two younger siblings on a playground. I see a 4 year old little boy with black hair and blue eyes laughing on a swing, yelling higher! higher! higher! And then I remember, crap the four year old needs his epileptics refilled and oh I should probably wake him up early and go ahead and give him his dose of phenobarbital. And then I remember that it's probably time for his feeds. He gets them every 3 hours through his feeding tube... feeding tube. I remember the picture on my living room wall and the conversation my 5 year old has daily about how his little brother doesn't have his feeding tube in in that picture. The picture a photographer friend gifted me... after the funeral. The funeral of my child who would be four years old. 

I often talk about how I feel alone. I feel like I just don't belong with "normal" people anymore. Talking about everyday things, like the weather or shopping just seems stupid to me. Such a waste of time and breath. It's not that I'd rather talk about the meaning of life or anything like that. It's not that I want to have more intellectual conversations, because I'm in a new category of intellectual superiority. It's just that when I'm in groups of people I don't really think about the weather or shopping. I'm thinking about the person who is missing from the group and I think about would they prefer summer over winter, rain over sunshine. And I'd rather talk about that. I'd rather talk about him. 

Tragedy didn't make me any better than anyone else. I'm not superior to anyone. Yoda, I am not. I'm just a 26 year old, in a 26 year old's body who buried her child. I'm just a person who is going through life, thinking the same thing that everyone else is thinking. Life is cruel and arbitrary. It isn't fair, but I still have to get up everyday, get the older kids off to school, do my daughter's hair, rush through my son's homework. I still have to make breakfast and call the bank and schedule my husband's appointments. I still watch cartoons with the younger 2 and read to them about dinosaurs and take them to the playground. I move through life the same way everyone else does. I'm not enlightened. I'm not smarter. I don't know the meaning of life. My tragedy made me petty and spiteful; two very normal, human like qualities. 

vacations.

My March goal was to start blogging more often, but it was Spring Break for my kids and we were on vacation, so I'm having  bit of a slow start. I'm here now, though! And I'm sunkissed and relaxed from a fun filled trip to Universal Studios Orlando, Florida. You know, I was born in central Florida and I spent a good portion of my life there, before I ran away with a boy fresh out of marine corps boot camp, so it might come to some surprise when I say this was my first trip to Universal Studios! GASP! 

I come from a family of Disney Junkies. My aunts and uncles worked at Disney. My mama was obsessed with the mouse and any chance we got we went to Magic Kingdom. My mama and I recently sat down and counted my old Disney tickets and concluded that I have been to Disney World over a hundred times. Keep in mind though, I had relatives who worked there and I did a little singing in the parks as a teenager, too. 

But we never went to Universal!!!! 

I have another confession.

I love Harry Potter. I don't just sort of like it. I LOVE IT! My oldest son, Skywalker, is obsessed with it! Everything has always been about Harry Potter with him. When he was younger he didn't want to cut his hair,because in the first Harry Potter book, Harry didn't want his hair cut either. Now that he has aged some, (he's 9!!!!!) he has stepped away from his love for the Gryffindor hero and joined the slyhterin house, where Severus Snape has become his idol. 

Going to Universal Studios this year for Spring Break was kind of a no brainer. We had to go! But in a family our size and only one income, vacations like Universal can put a damper on the bank account. People have been asking me lately (politely, of course)how we afford to take vacations a few times a year, especially to places like Universal or Disney and today, I'm going to share my secrets with you!!!! 

First, we plan ahead. We decide months in advance what we are doing and when. This gives us time to watch for specials on hotel prices and attractions and to put some money away. 

We buy gift cards. When you take a trip to your grocery store or to Walmart, throw in a $25 or $50 visa gift card or buy one add money each time you go, if that type of card has that option. $25- $50 added to a grocery bill every other week is easy for us. Our groceries are typically pretty expensive and adding in $25 doesn't make a huge difference, but after 7 months of $25 every other week is $350. You can also look for deals, which brings me to my next tip...

We take advantage of restaurants gift card specials. Throughout the year, around certain holidays, some food places will offer special on their gift cards. When this happens we BUY THEM. Chain restaurants are just about everywhere and we can use those Olive Garden and Chili's gift cards while on vacation... heck even the fast food ones while traveling.

Save up gas points. I'm not going to get really into this one, since we do not utilize it while we travel, but some grocery stores offer gas points per purchases in their store. You can save these up to help with gas, or use them for gas prior to your trip and save the money that you would have put in your tank for your trip. 

We use ebates. It can be a bit difficult to get into the habit at first, but if you are like us and shop online a lot, you HAVE to HAVE an ebates account. You earn money for shopping online at stores you would typically shop online at! All you do differently is go to the ebates website first and ebates will send you checks or gift cards as you earn money. I earn quite a bit each month here, because like I said we shop online A LOT! You can use the link below to sign up, which again I HIGHLY recommend! 

Sign up for Ebates!

Food is probably the biggest expense when we travel, so we try to eat light throughout the day and then have one big meal. I always set a budget of keeping food expenses under $60 a day and with gift cards and eating light, except for the one meal, we almost always accomplish this. (I say almost, because sometimes I just get a craving for ice cream) 

With souvenirs, we ask our kids to think practical. Before they buy a shirt that says Dollywood on it just because everyone in the park is wearing it, we ask them to really think about how often they will wear it back home. At Universal this past week, yea we spent a lot on souvenirs, but they were practical. We got Harry Potter cups and a blanket. I needed a new throw blanket for over my couch anyway and we always need new cups. 

Utilize Groupon! This kind of goes with my first tip about searching for specials. When it comes to food and attractions, sometimes even hotels, you can get AMAZING deals by looking on groupon first. I highly, highly recommend looking around on the site when planning your trip. 

And my last tip about saving money for a vacation is to start using swagbucks as your search engine. I started using this in 2010 instead of google and I have earned over $200 in gift cards. It doesn't seem like much, but considering I'm just surfing the web and earning gift cards, I think it's pretty groovy. And if you are someone who does a lot of web browsing then I'm sure you will earn more, more quickly. You earn points for searching for things. It's not always quick and you don't always earn points, but when you do earn some you save them up and then trade them for gift cards. You can get visa cards, gas cards, food gift cards... the options are limitless. If you use the internet, you should be using swagbucks instead of google. You earn money for searching the internet. It really doesn't get any cooler than that. I included a link to swagbucks below. You won't be sorry. I promise!

Sign up for Swagbucks!

It's not about how much money you spend, but about being a family. Fancy restaurants and 5 star hotels mean nothing if you aren't having fun. If you are too stressed about the money that you can't enjoy your vacation, what kind of vacation is that. I don't think it matters where you take your kids on vacation or how much you spend on them. It matters that YOU are with them and that they see you are having fun.  

 We don't necessarily go to places like Universal to spend money. We do these type of things, so that for a little while we can be "normal." For a few days we don't have to worry about doctors or a bad prognosis. We go on trips like this, because we know life is short. We know that any day our children can lose the ability to do these kind of things together. It's not about spending money. We budget for these things. We save and we plan. We don't do them because we have the money. We find the money because we want to do them. We want to make memories. I want my kids to look back on these days and remember that they were together. We were together. And for a little while, for a few days out of every year, we don't have to feel confined or different.

Closure.

I've been staring at this screen for near 6 hours. I don't know what words I'm looking for, but I can't find any that "feel" right. I'm a word girl. I love words. I love sentences. I love stories. Words are who I am. I am the girl who always knows the RIGHT words to say. I'm the person that friends ask to type of birthday messages to their sweethearts and heartfelt thank you letters to their friends. I am good with words, but today I just can't think of any. Maybe there are none. Maybe there is no way to tell the world the things I want to say. And I guess this is just what it feels like to be at a loss for words. 

And since I cannot find the words for you and everyone else reading this, I'm going to address the person who I can talk to. The person who I finally have the right words for. 

She told me I was strong and she didn't know how I did it, the lady behind the desk at the doctor's office. She was scanning the papers that we have waited 4 years for and preparing them for copies and faxes. And she told me I was strong. I hear it all the time. Everywhere I go. Every person I meet. everyone feels the need to tell me how strong I am, but I don't feel strong. I feel the complete opposite. I feel like I break under pressure. I falter. I kneel. I'm weak. I've been on my knees for the better half of the last 4 years. I've been screaming. I've been crying. I've been begging. That is who I am. I am not strong. I am weak. 

I shut myself out to the world. I don't let myself feel anything but you, because anything else would be too much. I like being alone. I like shivering. I like the dark. I like giving up. I like the pain. The pain is my only comfort. The dark is my best friend. I'm too tired to fight anymore. Being cold reminds me that I CAN still feel if I wanted to and I enjoy the isolation because there is no one there to look at me with pity in their eyes. 

They all tell me I'm strong and they don't know how I do it, but I think it's empty words. No one can be strong in our situation. Not even you. You got too tired to fight anymore and I don't blame you or hate you or ever get mad at you for it. No one can be strong all the time. Not you and definitely not me. 

I've spent a lot of time not knowing who to curse for this, for these changes in you, in me, in our lives. I've yelled at God. I've hated God. I've hated everyone at some point, because they were all someone to blame. They were just someone I could hate. I'm not just weak. I'm bitter. I'm angry and I just want to scream. I want to hit walls and break plates. 

I've blamed everyone. At some point, I've blamed the woman behind the desk at the doctor's office. The woman holding the papers with all our answers. The one with water in her eyes, telling me how strong I am and how sorry she is for our family. 

She's sorry because like me, she has just been made aware that I am a carrier for a mutated GMPPB gene and I was unlucky enough to fall in love with a man who also carried a mutated version of the same gene. 

I have someone to blame... finally. I have someone to curse. I have someone to hate. We have someone to hate. We have our whys. We have our hows... and we know who... 

Congenital Muscular Dystrophy caused by a change in GMPPB murdered my child. 

CMD stole you from me. 

Because of CMD, I won't get to watch you blow out candles on your birthday. 

CMD took your smile from me. 

CMD took you from my arms. 

Because of CMD, I don't get to watch you grow up. 

And I'm not okay with that. I will never be okay with that. I will never stop missing you and missing the things that this stupid disease stole from us. The moments we were suppose to share that it took from us will always be on my mind. I will never let you go. I will never let this go! I will never let CMD off the hook for the pain it caused you and I will never, I promise to you, I will never stop loving you... 

I am so sorry that I have been living the way I have for so long. I am so sorry I've let myself become so consumed with anger because you were gone and I didn't know why. I'm so sorry I stopped living. I'm so sorry I've failed you. In losing you, I lost myself and I have been okay with that but it's not fair to you and it's not fair to Jake.

It's not easy and I know everyday will be a struggle, but I promise you, Nathan, I will fight for Jake. I will be his voice. I will advocate for him. I promise to always protect him.. I will not let congenital muscular dystrophy steal his life, too. And I swear until the day I day I die and for eternity after that I will love him. And I will always love you, my handsome. 

Crocheting Blankets

During my leave of absence from the blogger world, I crocheted, a lot. I made ponies, pandas, tons of hats, monkeys, dolls. I even made a Darth Vadar! I kind of started a little business on the side and I've been making pretty good money. 

Crocheting became an outlet for me. It was therapy. I used crochet to cope, to deal with my anxiety and my depression. And while I love everything I've made, my favorite things are the two blankets pictured below that I made for Doc. (Well actually the ripple one was made for a friend's baby, but I totally failed at getting it in the mail, so Doc started using it.) 

It's gotten too hot to crochet more blankets, so I'm hanging up my hooks for summer, which oh em gee I haven't shown you my hooks! I bought my hooks from an Etsy shop, The Lemonade Shop back in February and they are seriously the loves of my life. 

It's the 10th and 11th Doctor from Doctor Who! Yoda, Captain America, Castiel from Supernatural, and Thor! All my favorite men. 

You can check out some of my work at my flickr stream, linked on the side of the page or checking me out on facebook, Bailey Belle Boutique.