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A brand new year

2018 was the worst year I’ve had when it comes to my dystonia but the best year I’ve had when it comes to happiness. I learned to never give up and to always fight for what you want and what you need. Although I’m still trying to get better at standing up for myself, I’ve improved greatly over the last year. My doctors in Boston stopped helping me which pushed me to find answers somewhere else. Eventually I ended up back with my surgeon in Albany, who has always come through and helped me overcome every struggle I’ve ever had with my dystonia. Once again, she’s helping me and next week I will have my DBS redone.
The stress is killing me trying to find help with the kids, but I’m so thankful for my family and friends for always helping me. In times like this, I want to give up and just cancel my surgery because finding help is very difficult, but I cannot be the mother I need to be in the condition I’m in and getting help will, in the long run, help my children as well.
One of the biggest reasons why I keep fighting is because Jim pushes me. He is the first man I’ve ever met that I feel comfortable being myself around and he stands by me through every hard day and the best days. He lets me cry on his shoulder and tells me it’s going to be ok but he also goofs around with me, makes silly voices and sings until I cheer up. He pushes me to do the right thing when I want to take the easy way out, he helps me overcome all of fears and is right there holding my deformed hand when I need to face something difficult. I can’t thank him enough for changing my life in so many ways, and in 2018 he asked me to spend the rest of my life with him. And of course I said yes.
In 2018, even though I had some tough times, my children had some amazing gains. Cody made it through his first full year without having pneumonia.  He started kindergarten and continues to amaze us every day with his strength and his eagerness to learn. He played tball for the first time and took ice skating lessons and loved both! And my sweet Hailey. She blows me away with her kind heart and her love for learning. She is doing so amazing in school the teacher actually said she wished she had a whole class of Hailey’s! She is reading chapter books and learning multiplication at home. She is a very smart girl and I know she will do great things in life! She started lacrosse and basketball this  year as well as playing softball and is becoming quite the little athlete. She loves being active and loves being outdoors!
In 2018, I started a new job at Maxim Healthcare working as an LNA for Cody. This is so perfect because I can be be with the kids but still be working. It was a perfect fit for my family and I really enjoy it. I hope to further my education and work outside the home once both kids are in full day school.
2018 was an amazing year but I know that 2019 will be even better. I am very nervous about next week but I am trying to stay positive and remind myself that better days are coming.
I hope everyone has a perfect 2019 and I’ll update again after my surgeries. ❤️

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