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I Will Not Let Life Knock Me Down

Hi everyone! I hope you all are doing well and had a good week. Wow, what an absolutely crazy past week and a half my family and I have had. I am very sorry that I did not have a long post last week and that I am a day late on this one, but I will explain why this was necessary. My life and my family's life was completely flipped upside down this past week, and I am going to be completely honest in saying that I have never been more scared in my entire life than I have been this past week.


On Friday, February 26, Cate was rushed to our local hospital by ambulance from her day program because she was not very responsive and overall they knew something was not right. She was unstable and her core body temperature was dangerously low. Our local hospital was not the right place for Cate's state, so she was rushed from there by ambulance to the Children's Hospital of Philadelphia, where she was placed in the Pediatric Intensive Care Unit (PICU). Cate is seriously ill and at this point the future for her is not looking the brightest at this moment. She has had countless tests and procedures done, but the doctors cannot find anything wrong with her and that is the scariest part.


I must also mention that this event (I do not even know what to call what she is going) Cate is having/going through was not out of the blue. She was having some health issues for the past month that have been consuming our lives, but this rapid decline or change was extremely sudden and fast.


It is very hard to understand or say what is going on with Cate because she is one big mystery. Her genetic mutation and condition being very new and there is a teeny tiny population of those with NAA10 Deficiency/Ogden Syndrome. Cate is the oldest person known to date with her mutation and variant, so there is no road map or timeline for her life, and this can be very scary and frustrating.


Needless to say, this has been quite the traumatic and stressful week, and it has been very hard for me. This past month has honestly just been a mess, and I am dealing with a great deal of complex and difficult feelings. Due to the fact that Cate has been having so many health issues prior to her recent hospitalization, she took up a whole lot of my parents time, so between school and that, I was alone a lot. Now, I am alone a lot too. I understand Cate has greater needs than I at the moment, but it does make it any less hard. It is hard to balance everything that is going on, but we are trying to make it work. My emotions have been a roller coaster. I am very in tune with my emotions and how I feel, and for the first time in a very long time I do not know how I feel. My emotions are unpredictable. One moment I am numb, the next I am fine, then I am sad, and sometimes I just forget my reality.


I have been asked a lot recently how I am doing and how could I ever be handling the situation I am in. I have been asked how I am not a wreck and how I was holding it together. To be completely honest, I am not totally sure how I am, but all I know is that I have to roll with the punches. My entire life has been a series of punches, not one as hard as this, but still I have faced a lot of adversity with Cate being the way she is. I face a lot of challenges most people do not understand, and I have learned that you cannot let life knock you down. Despite unprecedented and unimaginably scary circumstances, I cannot lock myself in my room and cry all day. That is not how life works, I choose to stand up and still live my life. I am a very positive person, and even under crazy circumstances, I am not going to change how I look at life. I also know Cate wants me to still find joy and light, and I strive to still find this.


It has been one crazy week, but we will find a way to get through whatever happens next. Thank you for reading and I hope you have a great week.


-Alex

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