What to expect when your expecting, brain surgery that is.

There have been many people who have messaged me over the last few months telling me that this blog, about Emma's journey with Chiari Malformation has been a great help to them. Now that this journey has slowed to a snail race, because Emma is doing so amazingly well, I thought I would wrap up Emma's journey with a reflection of the last year. Specifically for those of you who have a child getting ready to go through this and are currently where I was a year ago. Having a child and being the child during this time looks very different. So to be able to take care of your child you need to maintain some sort of sanity, hopefully I can help you do that by sharing with you my experience.

Surprise! Your child has been diagnosed with a Chiari Malformation and the neurologist or neurosurgeon is now recommending decompression surgery. You get home from this appointment (if you didn't go straight to the bar) and stare at your wall babbling to yourself because all you can think of is the fact that someone is going to open your child's brain. This isn't a tonsillectomy or an appendectomy this is the brain, the center of what makes your child who they are and how their body functions. You can live without tonsils or an appendix but you cannot live without a brain, and now someone wants to cut into the brain of your perfect (or not so perfect for us realists) child. There are different types of people on this Earth those who need facts and those who do not. I need facts, if you are not a fact type of person scroll past this.

The facts:
The part of the brain that makes your child function is not located in the dura mater. Its located below that... now its not much below that, as it is just thin tissue, but the portion of the brain they are cutting into is a protective layer and has no function other then protection. Here is where your research of neurosurgeons comes in to play. This disorder is so widely misdiagnosed and misunderstood finding a neurosurgeon that is knowledgeable in this is hard. So do your research, Seattle Children's has one of the best neurosurgeons in the nation so we got lucky. However, if your surgeon doesn't know a Chiari from a hole in the ground get a different one. There are children who have had to have multiple surgeries because their surgeons were not as educated as they liked to think they were. Don't let your child be that child. Also, pay attention to success stories just as much as you pay attention to the worst case scenarios.

There is a huge network of people who's children have gone through this, use us:
I say this for a couple reasons. First is obvious, we get it. We understand the fear, anxiety, and the chaos that comes with this. We may not have all the answers but when we say "we understand" we do. Just like you, we have cried, been angry, felt helpless, and have lost sleep. Finding those that can identify with you is crucial.

Know that you will be disappointed in some and in awe of others:
If you were as blessed as I was there will be people who step up to help in whatever way they can. Friends, family, and even strangers will hear your need and they will come. Focus on those who show up and don't take personally those who do not. Take an honest inventory of your friends and family. Do not expect the aunt, uncle, sister, brother, or friend who has shown a history of self absorbed behavior to change because your child is having their skull cut open. While this may be the scariest event of your life, its a fleeting moment in theirs. If you love someone who live their life creating chaos or always having to have a crisis I would suggest taking a break from them. Partly for your sanity but mainly so you can maintain the relationship. You will get to a point where people calling you to tell you their problems that are 99% self inflicted will make you want to pull your hair out. You do not want to lose a friend or hurt someones feelings because today you can't handle their drama, when you could yesterday. They don't get it, so do an inventory, assess who  has the personality traits needed to be a support, and who will just cause added stress, then limit the added stress.

Expect to have less tolerance for people when this is over:
There is nothing that puts life into perspective more then fearing your child might die. Now it is more likely for you to win the lottery having only purchased one lottery ticket in your entire life then it is for your child to die. However, logical reasoning at no point becomes stronger then the innate behavior of maternal protection. You will hear a thousand times that your child is going to be fine and that nothing is going to go wrong. This won't help ease that fear that sits in the pit of your stomach, this is a natural biological reaction, I would be more concerned if you didn't have it..

Do not even attempt to sleep the night before surgery:
It won't happen, accept it. If you can do something fun the day before with your kiddo, rather then sit around in a state of quiet panic, do so. I think as parents we get so caught up in the stress we don't see how that stress affects our kids or we are unable to see it. Don't talk about the surgery or your fears in front of them. Save that for when they are not around, schedule a girls night with supportive friends use this time to cry and vent. To our children we are the strongest people alive, if they see that this is breaking the strongest person in their life imagine how bad it must seem to them. Put on your big boy pants or panties and smile.

The morning of surgery will be hell:
Emma was 6 and a very tall 6 she clung to me like baby monkey that morning, it took all I had not to cry, I did good I walked her down to the surgical suite and waited until they put her under before I lost it. I wasn't expecting that, I am not much of a crier, and I don't cry in front of people so I took a few minutes to myself in the hallway, slid to the floor, and sobbed. You will cry, accept it and find the best possible way to allow it. I had my breakdown wiped my tears and met with my family back in the waiting room. The next 6 hours I laid outside of the surgery center on a horribly uncomfortable couch holding a pager from 1980 praying for it to go off with an update. They said they would page with updates, I only got one and that was when surgery began. I heard nothing until the surgeon came out to tell me things went well. Have someone with you who can hear what the surgeon says about surgery and how it went, you will be so overwhelmed with that biological maternal instinct to get to your baby, that you won't hear anything they say. You want to know if it went well and if anything was not what they expected. For instance our NS told us that everything went well, Emma did great, and that he had to remove more "bony structure" then he thought he would. It wasn't until the next day that I remembered him saying that and thought "Well shit!? What does that mean, is that worse or better? Will it change her healing process?" So I asked the nurse who had no clue what I was even talking about. I still don't know what that meant.

Nothing prepares you or anyone with you to see your child right after surgery:
They look dead and you feel helpless. Emma barely woke up and when she did it was only because she was in pain. Don't expect the nurses to stay on top of the pain medication, even the best nurses are busy. You know your child, if you think they will need something make sure they get it. Once you get behind the pain its hard to catch up. Emma didn't get any pain medication regardless of me asking for it the night after surgery. They said it was because she was sleeping, she wasn't sleeping she is shy and I was asleep so when they came in to mess with her she kept her eyes closed so she didn't have to interact. Getting in front of her pain was hard and the first 2-3 days were rough.

The hospital is boring bring something to do:
I know that when they say you will only be there 4-5 days you think that that isn't too bad, but there are 24 hours in a day so that is 96-120 hours... that is a lot of hours to be staring at the wall. Also bring food you and your kid like to eat. The hospital food is terrible and the cafeteria isn't much better. You do have options, if your kid doesn't eat what they are serving for dinner ask for the number to the nutrition center and call them.You want your child to eat, they will feel better so if you need to search and find something they will eat then do what you need to.

Don't expect the nursing staff to take care of your child as well as you would:
They have more patients then just your child and as parents we expect people to drop everything to take care of our children because that is what we would do. If every nurse did that for every patient they would never get anything done. You are your child's best and only advocate. So make sure if you feel like they need something and the nurses are missing it you go out of your way to get it for them. I ended up going to the head of family services after asking repeatedly for us to be moved to a different room. We were originally placed in a room with a girl who had some sort of stomach issue. Her parents were awful, they were mean to her, they were yelling at her about eating and Emma was incredibly anxious being in there listening to these people berate their child. I took her to the bathroom barefoot and she stepped in this girls fecal matter that was on the floor not a whole lot but enough that I lost it. She just had brain surgery and fecal matter was not on my list of acceptable situations.The nurses were not listening to my complaints to get a new room, after I went to the family services coordinator it took less than 5 minutes to have us moved. I did have several administrators throughout our stay come visit me to apologize profusely for my child stepping in another child's feces.

Expect the best, know that you there is power in your words, things will get better:
You may not be able to see it now but things will get better. This will always be probably the most traumatic event you will ever have in your life. I've seen someone shot and I was more terrified during this then witnessing a murder. Expect that you will always have a sick feeling in the pit of your stomach when you look back at this time in your life. When you get that sickness that anxiety go take your kids to the zoo and celebrate them, they are here, they are well, and you survived. 

Emma update from the worst blogger ever!

I feel like the worse blogger in the world. I want to apologize to all of you who have worried about Emma over the last week not knowing how she is it has been a long few weeks!

On November 22nd an amazing benefit was thrown for Emma to help with her expenses at Identity Studio Salon here in Bonney Lake. The amazing owner Stephanie opened up her spa inviting a good friend of ours, another local stylist, Heidi to join her. All proceeds from that day were donated to Emma. It was overwhelming in the way it came together. What started out as a small auction turned into a huge online silent auction and included snowboards, BMX Bikes, and a signed football and gloves from the wonderful Seattle Seahawk Richard Sherman. People I barely knew showed up to help, people I had never met before donated items. It was the most amazing thing and something I can never show my gratitude enough for. That show of support was the only thing that helped me through the hell of the next two weeks.

On December 2nd Emma woke up and the first thing she said to me was "Today isn't surgery day right? Its

just Emma's fun day? Right? Not Surgery?" I knew then that my decision to pack Emma up with her good friend Uly and those of my family who were able to make it and drive to down town Seattle where we spent a day doing whatever Emma wanted to do, was the best idea I could have had. We spent time at the Seattle Center where the kids played and Emma got to be 6 again. She didn't worry about surgery, her brain, headaches, or leg pains, we didn't even talk about her eyes or how things were blurry. We just played and  watched butterflies. We all wore our "Team Emma" shirts and Emma wore her "Team Captain" hoodie and we took over the Seattle Center. It was so nice to see Emma so happy without a care in the world. We had to be at the hospital at 6 am the  next morning and we leave an hour away from Seattle without traffic but at least 2-3 hours during rush hour morning traffic so we had decided to stay the night in Seattle at a hotel close to the hospital. Emma swam in the hotel pool and played until midnight when I think reality hit her.

My sister stayed in the room next door and they were all hungry from not having dinner so they ordered Pizza. Emma wanted pizza, but I don't think it was that Emma wanted pizza as much as Emma knew she couldn't eat anything that late because of the sedation the next day. Emma at this point had mastered the fake cough, she had told everyone she was sick so she couldn't have surgery but the pizza I think pushed her over the edge. She sat in the hallway with my sister and cried, she was hungry and she wanted pizza. She didn't want surgery she just wanted pizza. I got her into her pajama's and crawled into bed taking her with me and snuggled her until she fell asleep. I of course didn't sleep all night. The idea that in just a few short hours I was going to have to hand over my 6 year old to a group of people I didn't know made me physically ill.


5 am came faster then I ever could have expected it. I got Emma up and loaded her in the car. I decided it was best if I went alone, but my 14 year old couldn't stand the idea of not going. I handle stress better when I'm not worried about how everyone else around me is handling it, but I took her too with me. I carried Emma in her jammies from the car to the check in desk, then waiting patiently for someone to come get us. I could have waited longer, they came far to fast. I carried Emma back to the room where the nurse asked about her "cough" I tried to explain it wasn't a real cough but she got a bit snotty with me and went through the whole testing her lungs thing, which just made Emma more anxious. Emma isn't a people person, she doesn't like being messed with. This hospital visit was going to push her well beyond her comfort zone. The Dr. soon followed after the nurse saw that Emma's lungs were clear and signed his initials on the back of Emma's neck (still not exactly sure why). After he left the anesthesiologists came in, there were two of them. We went over some paper work by this time I had changed Emma into her gown and she was clinging to me. It wasn't until I stepped into the hallway that led to the operating room that Emma lost it. I was carrying her with her legs around my waist and her face buried into my neck, she was sobbing. She didn't say a word she just cried. I fought back the tears but I only could do so much. We got into the operating room and they asked that I lay her on the bed. That wasn't going to happen, Emma was clinging to me like her life depended on it. The anesthesiologist decided that I needed to sit down and he would give Emma the "sleepy mask". She wouldn't take it, she has had this mask at least a dozen times since being diagnosed but this time was different and she refused to put it anywhere near her. So the doctor held her head and pressed it against my chest and held the mask to her face. So... Emma held her breath. She could only do that for so long and I watched her as her eyes rolled into the back of her head and listened to the monitor as her heart beat began to slow and her breathing got shallow. It took only a minute for her to be asleep enough for me to lay her down, so I stood up and laid her on the bed. As soon as I leaned in to kiss her the tears began, I lost it. The nurse came to me and told me she would be the one to  keep me updated throughout surgery and she would walk me back to my room. My glasses were foggy by now and I still had the mask on my face as I walked through the long hallway filled with medical equipment. I asked her to stop for a minute, I needed to breathe. I stood against the wall to catch my breath for a minute and clear my eyes before continuing back to meet up with my oldest daughter and my mom who had arrived.

For the next 6 hours I was in the weirdest place in my head. The waiting room began to fill up with my family everyone was there to wait with me. I laid down on this cot and waited patiently for the pager they gave me to go off which would mean I could get an update of how she was doing. I only got 1 update, it was really the  longest 6 hours. I cannot tell you the relief I felt when I saw the surgeon walk into the waiting room, he brought me a picture of Emma's brain, and told me that they removed more bone then they thought originally but that the patch was beautiful and that she did really really well. He said she was on her way to get a CT scan, and they would bring her back to the ICU where I could see her. So I stood there waiting for them to tell me I could see my baby.

When I finally got to see Emma I was so relieved, she looked good. She was still asleep which made her look angelic, she normally is so sassy that seeing her look peaceful was a treat. My kids didn't take it well, seeing her with IV's and unconscious brought them both to tears. I stayed with Emma while people rotated back two at a time to see Emma. I would say visit but she was asleep so they just came in and looked at her then left. She didn't wake up and stay awake until 2 days later, most of the time she was asleep. If she wasn't asleep she was crying. By day 4 she seemed to be doing better, but she hated the hospital, she hated the nurses, she hated the IV's, she hated it all. So I asked if we could go home. There wasn't anything being done at this point that I couldn't do at home, and she would be happier at home. So Friday night we packed up in the freezing cold and brought her home. Those first few days were rough, she was in a lot of pain, but didn't want to take the medication because it made her so sleepy. She needed it every 6 hours, luckily my youngest sister was here and slept in bed with Emma her first night home. So I could finally get some sleep.

We are now two weeks out and minus a fever and one fall down the stairs Emma is doing great. Her incision is healing nicely and we go in tomorrow to have a "wound check" then again in 3 months for a followup brain and spine MRI. Her eyes are no longer blurry and she is not blinking weird anymore. We won't know if they headaches have been relieved because her head hurts still from the surgery but I hope that we caught it in time. She is getting back to as normal as one can after having their brain cut open. She gets worn out easy and you can tell when she has over done it but I think in a few more weeks this will all just be like a really crappy dream.

It Could Be Worse

Several people have called me over the last few weeks to check on me. My best friend from high school informed me that I have never seemed so close to the edge. I won't deny that these last few weeks have been exhausting. I have not had a decent nights sleep since the first week of October. It has taken its toll on me emotionally, physically, and wreaked havoc on my marriage. My husband is not the type to worry about things, and I worry about things excessively especially when it comes to my children. Unfortunately, I take his lack of worry as a lack of concern, which it isn't. Have I mentioned I'm also a bit crazy? It is a good thing he doesn't worry like I do because this house would be in a world of hurt if we both were barely functioning. Every day I just remind myself that it could be worse. Emma could have something worse, something life threatening. While this disease has taken a few children's lives I am confident we caught it early enough that Emma will not be one of them. So it could be worse. There are people in the Philippines who are dying and injured, thousands of people have lost their lives and families have been torn apart. So it could be worse. There are children all over the world who die every day from the lack of medical care. We have one of the best pediatric neurosurgeons in the nation. It could be worse. So for all of you who wonder how I have managed to avoid the loony bin.. it is because I always remember that it could be worse.

And Then There Are All of You

I grew up in a small town, my parents and my siblings were the only relatives I had here. We created a network of makeshift Grandparents and the closest thing to Aunts and Uncles we had outside of Utah were my parents group of friends and their children were the closest things we had to cousins. In a town where everyone is somehow related, being the only ones who were not genetically linked made growing up lonely. There has been such an outpouring of support. People I haven't spoken to since high school have called, donated, and ordered T-Shirts. One woman whom I haven't seen in probably 10 years messaged me offering to bring Menchies for Emma after surgery, my mom's best friends is making Emma a pillow we can heat up, people have signed up to send meals to my home while I am away, a woman I don't even know met up with me today to give me some zip up jammies and slippers she bought for Emma. Friends that I don't have time to call once a month are rallying behind us and collecting T-Shirt orders, or organizing fund raisers.Other Chiari survivors have reached out to show Emma and our family support. So while us Carsey kids may not share DNA with anyone in this town you wouldn't be able to tell that right now. 

So How is That Cute Carsey Kid? 

Emma and her brother G on the Vibrating Chair (Creeps)

Emma seems to be settling in to the idea that she needs surgery, we have spent a lot of time talking about it My friend from elementary school found a book online geared for kids about this disorder and the surgery so we can send it to school for her teacher to address with Emma's class. She is enjoying all of the cards and notes people have sent and I keep her updated about how many shirts people have bought and where they live. One of the coolest parts of this whole T-Shirt idea was that it doesn't matter if you know Emma or not. You can still wear a shirt and take a picture so that she see's it or even just wear the shirt to get the word out. I thought Emma was the only child on this Earth with this disorder until I started talking about it. Then I found so many people who have it, have had the surgery, or have known someone with it. People refer to this disorder as being "invisible", it is often misunderstood and misdiagnosed. But on December 3rd while my munchkin is having the biggest and scariest procedure of her life, people will learn what a Chiari Malformation is and that is all thanks to each of you who will be wearing her shirt. Awareness is the first and most valuable step in finding a cure. 

A Message From Emma

So many people have called and messaged about what Emma likes so I thought I would ask her and let her tell you. :)

Thanks to all of you for your continued support and "shares" on Facebook, Instagram, and Twitter. We appreciate it greatly.

Her "Too Big Brain" makes her wise beyond her years.

Emma's getting ready to turn six on November 24th. Just a few short days before her surgery. Normally by now Emma would have told me exactly what it is she wants for her birthday along with who she wants to invite. She would have given me a list of options for a cake. She would tell me that chocolate with chocolate frosting would be perfect. She would have a theme and would have already started brainstorming what craft she would like to do this year. She would be obsessing about commercials and making me come to see what new toy is out, just to point out that that toy is for sure "the one" she wants for her birthday, instead of what she saw 25 seconds ago on the previous commercial (that she also called me out for). Not this year though. This year she hasn't mentioned her birthday, not one toy has come on the TV that she is dying to have. She hasn't told me a cake choice or even who she wants to invite. This year isn't about her turning six, its about her surgery. That is all she is obsessing about.

I Don't Care If I Fall Mom

One of the many wonderful side effects of Emma's "too big brain" is that she is clumsy. Often tripping on her own feet. I worry when she's climbing on things because she is prone to misjudge distance and depth. Tonight she missed her very first skate night with her school. She can hardly put one foot in front of the other half of the time; why on Earth would putting wheels on her be a good idea? She is not completely aware of what is going on or what this surgery entails. But there is one thing she IS certain of, that "she doesn't care if she falls" if it means not having surgery.  A few days ago Emma was telling me that her feet were tingling and she has also begun to do this blinking thing. She says her eyes are blurry and she is blinking trying to focus (I posted a video below). I took her in for an emergency eye appointment and the ophthalmologist told us her optic nerve looked good which was great news. If there was a change with her optic nerve surgery would be immediate and I am not quite ready yet. The hardest part of parenting a child with this sort of disorder is not being able to just explain to her that her feet are tingling merely because they are "asleep" and she just needs to "wake them up". Just like the debilitating leg pain that leaves her sitting on the floor, the headaches, and the tingly feet all I can tell her about her eyes is how sorry I am, and how I wish I could fix it. I remind her that maybe after surgery (it is only a maybe because there is no guarantee that the surgery will fix the pockets of cerebral spinal fluid in her spinal cord that causes these issues) she won't have to blink all the time, her legs won't hurt, and her feet won't tingle. The complete helplessness a mother feels when she can do nothing to ease the discomfort of her child is enough to make someone crazy.

Ohhhhh.....Shirts!

Every day since the day we were told Emma needed surgery I wake up (if I actually ever got to sleep of course) with some sort of anxiety about something I just realized. The simplest of things that we would not even think about as we go about our day becomes a task on the "to do" on the list of things I need to prepare for Emma. Minus the crafts, comfy pj's, non-skid slippers, pillow, toiletries, and the dozen or so other things I have put on this list to gather for her hospital stay; I just realized I have to buy Emma new shirts. For several weeks Emma won't be able to pull anything over her head. She won't be able to wear any of her t-shirts or sweatshirts. So this year for her birthday she will get a new collection of button up shirts to match the scarves I also still need to get to order to help hide her bald spot. I keep hearing that if anyone can do this its me, but there are days when I feel like that woman in that movie who sits in a rocking chair rocking back and forth saying "bah bah bah bah bah".

Is That A Cop?!?

Often times in life I look at Emma in shock of her and her wisdom. Everyone who reads this gets to hear about  her brain, but, I would also like to give you a bigger idea of who she is. She is so much more then just a kid with a brain too big for her skull.

 People whether they know me personally or not will tell you that I have no filter. I was born without that screen between my brain and my mouth that only allows politically correct statements to come out. I won't lie, I have offended a few people over the last 29+ years. Sometimes though, all it takes is a reality check from a five year old to make you sit back and reevaluate how you think. Those who do know me can also tell you I have racked up a few tickets since the fateful day I was handed my drivers license. A while back I was driving down a road notorious for police traps, when the car in front of me started to pull off to the side. The words out of my mouth immediately were of course "Sh** is that a cop?". As I passed the car who had pulled over the driver stuck his arm out the window to wave us passed. I at that moment (without thinking) spouted out "Oh no, we're good its just a black dude". The next thing that happened led me to take a good hard look at not  just how I speak but how I think. Right after I announced that the "black dude" was in fact not a cop Emma stated, very matter of factually, (almost as if what she really wanted to do was call me a giant a**hole) "Mom, that is not a black dude. That is a just a man". I proceeded to tell my five year old, who is obviously smarter than I am, that she was correct. That he was a man, just a man. Emma reminded me he was not a White dude, or an Asian dude, or a Black dude he was simply a "man". While Emma looks like she is allergic to the sun she is the only child I have that looks that way. My three other children are mixed and my husband is black, yet I just had my behind handed to me by my five year old for my indiscriminate racism. That's the type of kid she is, that's the kid everyone is supporting when they put their "Team Emma" shirts on the day of her surgery. She is far more then just this malformation and I am so lucky to be her mom.

Again, as I cannot say it enough, Thank you to everyone who has shown their love and support for Emma and our family.

I'm sorry did you just say my kid needs brain surgery?

Some of you may already know that my little Tink (Emma) has a brain malformation. To explain this in the most simplest of terms, she has a size 10 brain in a size 8 skull. We found out accidently when Emma was 2. She had an MRI for something else and found that her tiny little skull was squishing  her brain. So ever since, Emma's too big brain has been scanned yearly at Children's to monitor how much pressure is being put on the tonsils of her cerebellum and her spinal cord. Last years scan showed that she had some issues with the cerebral spinal fluid and its ability to move throughout her spinal cord but nothing major, she was asymptomatic. But this year, this year was very different.

Wait For It.........Wait For It.

We showed up at Children's for what became the longest day of my life at 9:00 AM. We waited an hour and a half for anesthesia to come put her under, then waited an hour for her to get done with her scan, then waited another hour so she could wake up. We had a 1:00 PM appointment with her neurosurgeon, that however, we did not have to wait for. They called us back right away and within a minute the doctor walked in followed by his entourage. One was a nice clean looking doctor completing his fellowship, another was a very tired looking medical student, and some nice woman who did nothing but write, and laugh at me. When he came in he noticed immediately that Emma no longer had hair down to her butt, which was nice, he remembered her. The fact that he remembered her counteracted that he couldn't pronounce her name, that's my fault for spelling it weird. Anyway, he came in and asked how Emma was doing? I said "Good..." "Has she been complaining of headaches" to which I down played "Eh, not really, she really just complains about her legs". The neurosurgeon went on to ask me about her leg pain he wanted to know how often and how bad it was. So, I explained how sometimes Emma wakes up crying because her legs hurt. She will sit at the bottom of the stairs and not want to walk up. Sometimes she just lays on the couch. He asked me what I thought caused this leg pain? To which I responded, very matter of factually, "Well she is taller then all of the kids in her class and still growing. So the only thing, I can think of, is growing pains. Or maybe a potassium deficiency? To which I added that I give her a lot of banana's. The nice fellow doctor laughed, at what I could only assume, was the fact that I had no idea I was answering a loaded question. The doctor turned to his computer and started looking at Emma's MRI from earlier and mumbled that I was not going to be able to fix this with banana's.

Holy Spine?

Emma's Brain

Normal Child's Brain

The doctor pulled up skeleton pictures of my kid, its weird to see your kids skeleton on a screen. He cracked a few jokes for Emma and printed her off funny pictures of her face with her eyeballs popping out for her to scare her sisters with. Then he looks at me and points to the screen and says "your daughter has holes in her spinal cord". "I'm sorry, what? Holes? How the HELL did she get HOLES in her SPINAL CORD!?!?!" was all that I could respond with. "Well", he explains, " if you look at the bottom of Emma's brain you can see that the tonsils of the cerebellum are smashed up against the spinal cord and brain stem, in comparison to a normal child's brain where there is space and room for fluid to roam freely" then he continued down her spine showing me where there are pockets of spinal fluid forming in her spinal cord more now then last year. It is trapped and building up causing "holes". I, at this point, could do nothing except stare at my kid who was sitting across from me in her wheel chair with her legs pulled up to her chest. She was still a bit groggy from the anesthesia. So I asked him while still watching her "Well, what do we need to do? Does she need to have it drained? Go on a diuretic?" "Nope" he replied, almost as if I had gotten his Starbucks order wrong, "She needs surgery". I took a deep breath mainly because it was getting hard to breathe."What type of surgery?" I'm still staring at Emma reminding myself to breathe and not act scared or I would scare her.The doctor looked at me and said "well, I need to open her skull remove a piece of it and cut into the outer layer of her brain to install a patch". "So.... you need to open up and operate on my 5 year old's brain?" "Yes, better now then later, when there may be damage we can't fix". The doctor hands me his card and says to call with any questions then leaves and sends in a woman to give me the run down of what was going to happen next. She handed me a stack of prescriptions for before the surgery. Some sort of soap I have to wash Emma in for the 3 days before and something to stick up her nose. She was talking about my insurance, and our percentage, and what we need to bring to the appointment. We would  need to stay there for at least a week. Only I can stay with her in the ICU but if and when she gets moved to a normal room in the hospital two people can stay the  night so I can have a break. She told us Emma had to have blood work that day and then come back in a few weeks for a pre-op meeting with the "team". I listened to them on the phone making a reservation for a room in ICU for after the surgery like it was a hotel. My head was still spinning, I am sure this doctor has done a million of these, but never on my kid. Brain surgery? My sweet, sometimes sassy, teammate needs her skull cut open? What have I done so wrong to have this happen to my kid?

Never Google

Emma's Spine

Of course, unlike any normal parent, I Googled this surgical procedure to see exactly what they were going to do to my girl. I read up on it. Quickly learned how lucky I am that Emma has stage I and not stage II or III both of those are debilitating she would be wheel chair bound and also that we caught it early enough to avoid what could be some horrible issues. I found the government page that gives simply facts, but that didn't help either. So I watched YouTube videos of other kids and their journey most of which made me cry; which was a terrible idea as I was sitting in the waiting room (again waiting) for the lab to call us back. I kept having to look away to stop from crying. Then I found a video of the actual surgery if there is one thing I would recommend to anyone in this type of situation not to do, its Google. 

I am a tough person, I have been through and seen more then most people and I think you can fix pretty much anything by rubbing a little dirt in it. I have a strong stomach, I can handle stressful situations like its a walk in the park. But there is nothing that prepares a parent to hear that their child has to have surgery on the most intricate part of their body. Its one thing to have your child's tonsils removed, but to hear they have to cut out pieces of their skull, open up the dura-matter, expose the cerebellum and brain stem, then sew in a patch is something I cannot grasp. For once in my life I am at a loss. I don't know what to tell her. She knows she is having surgery on her head, she heard the surgeon, but she doesn't know what that even means. I have read and read and the one thing that is said by everyone, is that the pain is horrific. That they will not be able give her the amount of pain medication she would need to be out of pain because its too much, she would get sick. So it will be a balancing act to keep her feeling well enough to eat and controlling the pain. I am a mama bear, I don't like when my kids are hurt, this not only going to be a test of her strength but mine and my ability to not kill someone. Then add to it all that I have 3 other kids and 1 of them isn't even 2 yet. He won't understand why mommy is gone. I will just not be here. So I have to hurt him in order to help her. I will have one in pain and one a hot emotional mess from not having his mom. Who's going to manage the house? Feed the kids? Make sure they take their meds? Snuggle G? Make sure homework gets done? I haven't even begun to think about the fact this surgery is scheduled right after Emma's birthday and right before Christmas and G's birthday. I have no idea how I'm going to pull all that off, I can't even express what this will all cost. I'm hoping that I have enough good Karma that the universe will step in. Its going to have to in order to keep me sane. So for those of you who take the time to read this all I ask is that you pray...pray for Emma to get through this and for me to be able to get her through this.

Arsenokoites VS The Bible

Some of you may know I was raised Mormon; I know my poor Bishops right? However, as an adult, I attend church only when its necessary; on Easter, Christmas, and all of those holidays that require some sort of Church worship. I don't choose to not attend regularly because I dislike the Church, but more because I dislike most of the people. So in order to refrain from throat punching someone; I would need to take a high dose of Xanax. Then, to get through the three hours that the services last, I would need a high dose of Adderral. Unfortunately those two are not able to be taken simultaneously, so I can't go. I can say though that as a child being raised Mormon, I do not remember ever being taught to hate. We have the same King James version of the Bible as everyone else, but the Church I was raised in never took one passage to focus on ignoring the rest, just to instill judgments and hatred. This upbringing has made me who I am, even if that makes my current Bishop cringe.What people need to always remember is that the King James version is a translated version of very old writings. Unfortunately and not to the fault of anyone (or maybe it is), things can be "lost in translation".

Rewind to a few years ago I met a child, and a couple, who changed my life. I did not give birth to this child, but that didn't matter, that child needed me, the men who loved him needed me, and when a child needs an advocate in their corner to fight for them I never turn down the opportunity to be that person. Over the years I have advocated for many children. But this one, this one amazing little soul gave me a chance to see the world in a whole new light. Unfortunately not everyone see's that light the same way, this blog... is or those people.

In order to write this blog I'm going to call on some professionals:

"Dr. Truluck is a native of Clinton, South Carolina, and was ordained as a Baptist minister in 1953 at the age of 19 when he became pastor of Beaverdam Baptist Church of Laurens, SC, while a student at Furman University in Greenville, SC, where he graduated with a BA in History and English in 1956.  Seminary education at the Southern Baptist Theological Seminary in Louisville, KY, included two Master's degrees in 1959 and 1962 and Doctorate in 1968 as well as Clinical Pastoral Education at Central State Hospital in Anchorage, KY." No I didn't choose him because he was from the same city as my husband, it was just a coincidence, or was it?

Lets just start with the facts; the Hebrew Language has less than 30,000 words, while the English language has over 300,000. The Hebrew language is primitive, just one step up from cave wall writings. They do not speak in past, present, or future tenses. Originally the Hebrew language only consisted of consonants, no written vowels and one Hebrew word could have several different meanings depending on what context the person was using it in. It is almost impossible to translate Hebrew exactly into English.  If you only remember one things from this not so exciting paragraph let it be this               -------->This language also does not contain a word for Homosexuality. This word which has been the platform for hateful slang terms for years and has bred generations of ignorance and fear, it is only about 100 years old and comes from the Greek word "homo" meaning "the same" and the Latin word "sexualis" which is where the English language got the word "sex". This word was first used in 1892 as an adjective and as a noun in 1902. Common sense should tell you something here.

The Greek word that is translated into homosexual in 1 Corinthians 6:9 and I Timothy 1:10 is arsenokoites, The literal translation of that word is formed by two words, "Man" and "Bed". So if we use the actual translation..."man" and "bed", my husband is an abomination while he sleeps right now, because he is a man in bed.This word is not found anywhere else in the Bible, and even when the early Greek-speaking Christian preachers were "condemning" homosexuals, they didn't even use that word. Not even John. Common practice during this time was male prostitution. Could that have been what they were talking about? No of course not.

Lets talk about Sodom the word "sodomy" is not a biblical word. A "Sodomite" in the Bible simply means a person who lived in Sodom. There were no Jewish scholars prior to the first Christian century that taught that the sin of Sodom was that of a sexual nature. No biblical reference to Sodom mentions sexual sins but only use Sodom as an example of injustice, lack of hospitality to strangers, idolatry and as a symbol for desolation and destruction.

 A phrase that is often used in the anti-gay teachings of the King James version of the Bible is when the people of Sodom told Lot to bring out the men so that the Sodomites could "know" them. Genesis 19:5 "And they called unto Lot, and said unto him, Where are the men which came in to thee this night? bring them out unto us, that we may know them" Knowing men means you are homosexual?

The word "know" in Genesis comes from the word YADA, this word is used 943 times in the Old Testament to describe how people should "know" God, good, evil, truth, law, people, things, and places. So does that mean that people should have homosexual relationships with these things as well? The word YADA has no correlation to anything sexual. Sodom, which was a barren wasteland south of the Dead Sea, was valuable because of the trade routes it protected. The Sodomites only encountered strangers that were enemy tribes coming to destroy them and take over this valuable fortress. As anyone in their situation would be they were not fond of visitors.  Lot in this verse was being asked to bring out the strangers, so the people of Sodom could attack and kill them just had they done any other strange people that entered their tiny little village. What was Sodom's response, to this angry mob of men? To offer his young daughters to the violent men outside. If all of these men in Sodom were gay... why would he be offering up his young daughters? And why are translators twisting this story and totally ignoring the fact that he was offering up young girls? Since when is being gay worse then raping and killing children?

You know what the story of Sodom teaches? Actually teaches? That people who are violent and evil, those who attack strangers and aliens just because they do not understand them or "know" them will receive God's wrath. Or maybe that the people who use children for selfish reasons will receive this same wrath... Just a thought.

Lets look at Leviticus 18:22 "You shall not lie with a male as those who lie with a female; it is an abomination." Or Leviticus 20:13 "If a man lies with a male as those who lie with a woman, both of them have committed an abomination and they shall surely be put to death." By the way don't forget there is no actual Hebrew word for Homosexuality.. so obviously the Hebrews didn't recognize it and wasn't even talked about then. So could this commandment from Leviticus refer something else?

 Lets look back at real life history, shall we? Lets start with Baal rituals. During this time there were two major rituals that were practiced in unison. To thank their Gods, Baal and Asherah, for the peoples success in bearing children, breeding animals, and growing crops. The Semitic people took a metal idol, lit a fire inside of it until it got hot and then placed babies, living, breathing babies, inside the arms of the idol until they  burned to death while they sang sacred hymns loudly drowning out the crying, partied, got drunk, and had huge group orgies.

 Now, of course, Leviticus in his commandments was for sure condemning the love between two people who just happened to both be men. Rather then the worship of Baal and Asherah, where people burned babies while the town got wasted and had sex with each other. Obviously, who wouldn't come to that same conclusion?

My frustrations with people who use the Bible and their religion as an armor to hide behind things they don't understand or are uncomfortable with, has probably quadrupled in the last couple of years. So I am going to ask that for those of you that use the Bible or Leviticus's commandments to fuel your ignorant hate stop choosing which commandments you are going to follow and follow them all. So let me help you, here is your list in la-mans terms of course for the most ignorant.....

1. Leviticus 11:1-12 You are not longer allowed to eat rabbits, pigs, oysters, shrimp, lobsters, crabs or clams. They are dirty creatures and an abomination. 

2. Leviticus 20:25 You also need to make a distinction between between clean and unclean animals and birds. You cannot eat anything that creeps on the ground.. you can however, eat grasshoppers because they hop. Yum!!

3. Leviticus 23 You are no longer allowed to do any work on Sunday.You must build a fire and offer up an animal, sorry Fido. 

Also, on the 15th day you must eat "unleavened bread" which is just bread without a rising agent, bread with no yeast, similar to cardboard I would imagine, sounds delish. No brioche for you. Also you need to bring your first sheaf of fruits or your harvest to your Priest, you all better start growing grain or its straight to hell for you. Find a lamb without blemish so a perfect, sweet, white, fluffy lamb similar to those you envision gracefully leaping over clouds while you prepare for slumber and toss it in the fire along side your other burning pets. Add two tenths deal of fine flour, and oil to the fire too, and some wine the good shit, this is the Priest of all people, so no 2 Buck Chuck. Also on the day you're making a wine, lamb, flour meal as an offering you're not allowed to eat anything this is your day to fast, I'm sure that's going to a struggle while you smell that burning flesh. 

On day 50 you need to bring out two loaves of that cardboard bread, fine flour, seven perfect lambs, one young bullock, and two rams (...and a partridge in a pair tree). All of those go into the fire, don't forget the wine too, no drinking while you build your fire, remember you're not camping you're fasting. Add one baby goat, and two baby lambs for peace as well. All of this done while someone is blowing trumpets.You get the point right? This is not all of it, there is more, the directions are very specific if you refer to YOUR Bible. It's a good thing you don't do anything on Sunday.

4. Leviticus 18:19 Husbands can not have sex with their wives during her menstrual period. How many of you men are guilty of that? Welcome to the dark side. Thank God you gay men are safe with this one huh!?

5. Leviticus 12:1-8 says a woman is unclean for 33 days after giving birth to a boy and 66 days after giving birth to a girl. So in order to cleanse your sinful, horrible self from the birth of your child you must offer up a lamb under the age of 1 and a turtledove or pigeon by fire to to the Priest. Don't worry if you cannot find a baby lamb you can use two turtles. WTF?

5. Leviticus 19:19 forbids the mixed breeding of various kinds of cattle, sowing various kinds of seeds in fields or wearing clothing with two or more types of  material. No more Cotton/Spandex ladies. Actually maybe this rule should stick.

6. Leviticus 19:27 You are no longer allowed to cut your hair, or trim your beards...and those of us with tattoo marks, well, we are shit out of luck. 

In Leviticus 26:14-16 it says "If you do not obey me and do not carry out all of these commandments, if instead, you reject my statutes, and if your soul abhors my ordinances so as not to carry out all my commandments ...I, in turn, will do this to you: I will appoint over you a sudden terror, consumption and fever that shall waste away the eyes and cause the soul to pine away; also, you shall sow your seed uselessly, for your enemies shall eat it up." ................ So I suggest you guys get to it.

Just for the record Leviticus was written years before Christ was born, and the only passage Christ EVER quoted from Leviticus was "Thou shalt not avenge, nor bear any grudge against the children of thy people, but thou shalt love thy neighbor as thyself"... He did not, however, say "Let us go forth and picket the Gay Pride Parade".

Matthew was written after Christ and quotes Christ as saying (Matthew 7:1-5) "For with what judgment ye judge, ye shall be judged; and with what measure ye mete, it shall be measure to you again.And why beholdest thou the mote that is in thy brother's eye. but considerest not the beam that is in thine own eye? Or how wilt thou say to thy brother, Let me pull out the mote of thine eye; and, behold, a beam is in thine own eye. Thou hypocrite, first cast out the beam of thine own eye; and then shalt thou see clearly the cast out the mote out of thy brother's eye." In short... wash your own windows before you start looking in mine...

I expect to see all of you who use the Bible to promote hate, out chaining yourselves to the doors of seafood places, especially where those men throw fish down at the market, those guys are going straight to hell. Also don't forget the barber shops, tattoo places, BBQ's, and anyone and any place selling clothing made of mixed wool, cotton, polyester or any other mixed materials. 

You know what Christ didn't do? He didn't say I'm going to die on this cross for you, you, and you; but not them. So if you are going to use the Bible as your platform and excuse for hatred and ugliness, you better do it right.