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.