A rough year, doing what you have to do

Posted: December 7, 2011 in General Blogging
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I am so glad that 2011 is coming to an end. It wasn’t a very pleasant year for my family. My son and I have been on our own for about three years while my husband has been in another country trying to create some financial stability for our family. A failed business, my son’s medical bills, our own health, and ailing parents have really set us back financially. In three years we have seen my husband for only two months. It is not easy dealing with life’s challenges without your husband or your father. This has been really hard for my son. He doesn’t understand that his father is sacrificing too. He doesn’t understand why his father had to go to another country.  He doesn’t that his father does not have access to the same opportunities here in America.

This year was a personal challenge for myself due to some health issues that creeped up on me. A year ago I was diagnosed with type 2 diabetes. And then for about a year I started to have some unusual symptoms including dizziness and loss of memory. The loss of memory was getting pretty serious. My success in my career was mainly due to my memory and the creativity of the mind. Finally after going through some tests it was determined that I had hypothyroidism. Since starting the medication things have improved but not totally back to normal.

Who knows, perhaps I am back to normal. Perhaps this is just my stage in life. I am over 50 years old, going through menopause, have diabetes, am over weight, suffer from both anxiety and depression, and have a thyroid that isn’t working. Perhaps this is the new normal.

One of the other big challenges we have been dealing with is my son’s type 1 diabetes. He was diagnosed a year and a half ago. A year ago he went on an insulin pump. Yet his blood glucose is still out of control. He is 13 years old and does not understand the seriousness of diabetes. I fight to get him to test his blood. I fight to get him to take his insulin. He is angry about the whole situation and I haven’t figured out a way to get this turned around. And now to top it all off I don’t know how I can keep paying for his diabetes supplies. We are struggling. We aren’t even able to live from paycheck to paycheck.

As some of you may know my son has several chronic health issues besides the diabetes. He also has epilepsy, non-epileptic seizures, Tourette Syndrome, an anxiety disorder, a little OCD, sensory processing issues, high functioning autism, and a little ADHD. That’s a lot to deal with. It all seems to be related. As you know many of these conditions overlap each other. The diagnosis is difficult, and the treatment is nearly impossible. Thus, this is where all of the medical bills come from.

Besides the diabetes, the other thing that was really beating us up was his Tourette Syndrome. He was having hours and hours of these violent physical tics and loud vocal tics. They were exhausting. Nothing seemed to help. We tried everything including medication, therapy, self-hypnosis and bio feedback. Nothing really worked. For most of this to work you have to really understand your tics and try methods to prevent them from happening. Unfortunately my son hasn’t quite figured that out.

Between all of the doctor appointments and nights with no sleep due to theses tics I was missing quite a bit of work and my son missed quite a bit of school. Lucky for me at work I had intermittent medical family leave time and was able to make up my time by working remotely. Usually my manager understood and then sometimes he didn’t. On the other hand my son’s school did not understand. They didn’t understand why he couldn’t attend school when he spent five hours or more in the night having full body jerks and vocal yells. They didn’t understand he needed to go to medical appointments. They didn’t understand that on top of his medical problems he is going to get normal illnesses such as the flu or a sore throat, or a cold, or a stomach ache. It got to the point they wanted a doctor’s note for every day he was having problems. Damm, I couldn’t afford to take him to the doctor every time he was sick or every time he had a bout of tics at night! They didn’t understand that there were no answers. The doctors had no cure. We have seen the best doctors in the country. On top of all this they didn’t understand that we needed to develop a plan that would educate my son with the restriction he has in life and teach him when he is able to learn.

So, this fall I took some time to evaluate the situation as it relates to my son’s education. As you may already know my son has some learning disabilities. He has been on an IEP since first grade. But in the last four years he has made no progress in math and very little progress in reading. He didn’t have the right accommodations in place, even though I would make suggestions, and I don’t think they were teaching him in his learning style. I don’t think they even knew what his learning style was. In fact I don’t think they cared if he was learning. I knew if I let things continue, my son would be graduating from high school and not be able to read.

I then realized I could do a much better job than the school. I was educated. I have a master’s degree. I know my son is quite smart and I just needed to take control and provide him with the education he deserves. So we made the decision to home school. And yes it isn’t easy. I work full-time. The key to it is to be very organized and planning ahead. I have my lesson plan for the whole year, with detailed daily plans that are a month ahead of us. My son follows a schedule while I am at work, and then in the evening we have class together. I am following a flipped classroom approach, where the detailed project work we do together. I take full advantage of information and applications that are available on the internet and educational television programs. I am taking a very practical approach to his education to ensure he learns what he needs to survive in life and to be a contributing citizen to his community. It is not easy, but we have already made tremendous progress since we started in October.

On top of all of this we have had a few more bumps in the road. Last summer we were rear-ended in our car. We both had whiplash and my son had a concussion. The car was totaled. Great, we have no money and I wondered how in the hell was I going to get a car. If I didn’t have a car there would be  no job. I commute about 35 miles away.  Between cashing in my 401K, which wasn’t much because I had already used most of it for all of the other emergencies, the insurance check, which wasn’t much because my car had 275,000 miles on it, and my gracious mother I was able to get a car. This was one less pressure off my mind.  THANK YOU MOM.

This year I have also been facing parents who are getting older and their health is becoming more and more challenging. My father was seriously sick for six months. He has been seeing many different specialist, all of them unsure of the diagnosis and each of them coming up with something different.  Most recently he saw a heart specialist and they have determined he has a blockage.  They will be dong surgery in the near future.  Most recently my mom is having a possible cancer scare. We will know more in the next month. She is a tough lady. She has survived breast cancer and uterine cancer.  The doctors are going to do a biopsy.  Hopefully it isn’t cancer.  We will see.

This year we also lost someone very dear to us. My husband’s brother died from cancer. He was in a country where he didn’t have access to medical treatment for cancer. He died within 9 months of being diagnosed. The end was bad. My husband was literally donating his blood daily to try to keep him alive. His wife went from hospital to hospital to try to buy blood. Medical care in third world countries is limited.  It was a terrible situation. But now he is at peace. We miss him dearly. He was kind and generous. More importantly he was greatly loved.

So we are almost to the end of 2011. The holidays are here, even though I don’t feel like being in the holiday spirit. I think to myself, let it be over. What could be worse than this year? I spoke too soon. My company informed me last week that my position was being discontinued and I was being laid off. What! Not now. My first thoughts were, I have to keep my son’s health insurance. I cried. Talk about sucker punching you when you are down.

I am telling you all of this because I have had a bad year and needed to get it off my chest. I am also telling you this because I am an example of one of those Americans that is struggling.  Looking back, my life has never been easy. BUT, I am also a survivor. I will get another job. I will take care of my son. Life will go on. I may not have my own home. My apartment may not be all decorated. I may not have a lot of clothes. I may not go on vacations. I may not be able to eat at restaurants. Sometimes I may not feel the best. I might even feel sorry for myself. But I am alive. I have a family that I love. And what else would I do. Give up? What would happen to my son if I did that? I have to be here for him. I have to make it. Sometimes you just have to do what you have to do, and that it is how it is with me. Doing what I have to do.

Here to 2012! It is going to be a great year.

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