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.