We have been in Colorado for almost a month now and its been a whirlwind. Its been a huge adjustment for all of us to be away from my family and friends and not have our own space ect. But we are slowly getting used to it. I start a new job as a program director for a before and after school program tomorrow. I am really excited about this job and I feel like God provided the perfect job for me during this time. The kids started school last week and they have been doing pretty good. Thankfully with my schedule I will have time to go volunteer at their school and have lunch with them during the week.
Before we left California Curtis finally got an appointment with the neurologist and physical therapist at UCLA. They were both very helpful and gave us practical ideas to help with some of Curtys symptoms. The best tip was to use a straw for drinking, he has barely choked at all since we started doing that. We are still trying to do better at making the physical therapy moves a habit but hopefully we will get into the schedule of things soon. We just got our medicaid approved so hopefully we will get him into the Huntingtons center of Excellence here soon.
Our next thing to do is apply for Social Security Disability for Curtis. We have not started the process yet because we want to make sure we do it correctly the first time so we do not have to deal with being denied. We are trying to figure out the best groups to go through to get help with this process.
Curtis's symptoms have mostly stayed the same. Some days he has a rougher time than others but thankfully those days do not come to often yet. We are using a lot of vitamins, antioxidants, essential oils, and exercise to try to keep the symptoms from getting worse.
I have wanted to be very honest in this blog so that people can really see a glimpse of what it is like to live with this disease but it is super hard to be open all the time. So many people say all the time how strong we are and how great it is to see us be leaning on God through this ect. It is encouraging to hear that but I want you all to know that I am not as strong as I might seem. The last few months have been very hard for me. I have never been the type to deal with depression but dealing with all of this has brought me to a low I have never felt before. A huge part of that depression is that I am mourning the loss of my husband already, Even though he is here physically it has become hard at times to connect emotionally and mentally. We try to enjoy every day together but it is hard and complicated. I am trying everyday to find peace and Joy through God and to make decisions that are the best for Curtis and the kids but some days its hard to just get up and get regular things done. I know that as the stages of this disease change that my mindset will continue to change and that each stage will bring new hardships, but I also know that God will continue to get us through this even when it doesn't seem possible.
I wanted to say a HUGE thank you to everybody who has helped us financially over the past few months. This move would not have been possible without each of you. I have wanted to get thank you notes to all of you but it hasn't worked yet. Thank you to all of you who have been so faithful in praying for us. We feel those prayers every day. You are all so special to us.
Some current prayer requests:
-That the kids would continue to get used to Colorado and that they would feel like this is their home. Also that they would continue to adjust well to school.
-For us to have wisdom about finding a church to attend.
-For us to make good friends soon, I am feeling pretty isolated.
-For Curtis to be able to be present mentally and emotionally and be able to feel comfortable and less stressed.
-That this job would provide enough financially for us to get our own place in a few months or that I would find a way to make a little extra.
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