Month: September 2011

Since last time I blogged my dad has rallied and I started school. Things have settled down a bit here at home and I am feeling a lull in the stress level.

I have talked to my dad about every other day since I heard of his condition and a week ago he was in a coma. The last few times I talked to him he talked back to me and aside from sounding weak he carried on a conversation as he might have always. He has even been out of bed and used the walker! I’m scheduled to fly out to see him on Friday this week. It has been 6 years since I saw my dad last and I am a little scared about what I am going to see, but I know for sure that I do want to see him again. It just feels right and I am so happy that I am getting this chance again. I also will get to see the rest of my family there in Ohio and that is just frosting on the cake and I can’t wait! It doesn’t matter how long it has been, love never goes away and I feel the love and look forward to reconnecting with everyone there. I have things covered here at home and know that I can leave with peace of mind and that the “boys” will have a fun weekend too.

School is great. It has been 21 years since I graduated cosmetology school and I honestly don’t think I had this much fun in school then. The instructors are amazing and my classmates are great too. Each day you get to give and receive a massage. We have a big class and are encouraged to pick someone new each day to learn about different body types and get out of your box so to speak. I jumped right on that and dove right in and have lost all anxiety about doing this. I love it. I am definitely headed in the right direction. This is what I want to do for sure. I already have a list of classes I want to take next to take this to the type of practice I want to do. It is amazing how these things just seem to unfold and I am holding space for it all to come together just as it should.

It has been suggested and just keeps coming up for Scott to have chelation for heavy metals. When he saw Dr. Lam they did detect lead and other heavy metals but chose to not do chelation as I guess there were other things they felt needed to be addressed first. I guess that there have been cases where people were diagnosed with having ALS and actually had lead poisoning. I guess it is hard to detect because after time it isn’t found in the blood because it has traveled to the muscles and bones and nerves where it does damage. We found that you can do oral chelation and also found a couple of local doctors that do it. This is our next step. Keep praying and sending love and healing energy our way. I have been praying for some kind of treatment to show itself and I think we might be on to something here. Can’t hurt to try.

I struggle with this blog in that I want to let everyone know what is going on but I don’t want to put out too much negativity towards the situation as I do believe that we get what we put  out there and I am super sensitive to that especially right now. We need as much positive energy towards this situation as we can get right now. Things have changed significantly since the beginning of the summer and it is evident that something needs to happen soon to help. So I am asking again for everyone to continue to pray, send energy, positive thoughts or whatever means you personally use our way and want to express my gratitude for all that have been all along and continue to do so. Love to you all.

My parents divorced when I was 6 months old and I saw my dad only a handful of times during my childhood. My memories of him include a couple of visits to his house when I was little, maybe about 5 and then maybe 10. I could have gone more often but don’t recall and really don’t think so. His wife took me shopping once and I sat while she got her hair done. I remember he would brag that he could eat a cheeseburger in two bites. I thought it was gross. There was once that I was up visiting my grandma the last summer she was alive and he was supposed to come spend the day with me. He never showed up and later my mom and brother found him in a local bar too ashamed to come see me for some reason. Seems like that was pretty much how he operated, he just didn’t show up. I was 13 that summer.

I remember bringing my brother up to Ohio to live with him and meeting his 3rd wife and her children and the girl who was about my age asking me if I was going to be her new sister. I just looked at her astonished. I don’t think I said anything, but I definitely wasn’t going anywhere to be anyone’s new sister.

There were years where I didn’t hear from him. Then I got a call one day when I was about 23. My brother had found out that the reason we hadn’t heard from him in so long was because he was in prison. I won’t go into the who’s what’s and where’s about that, really doesn’t matter at this point and for this particular account.

I got the address to the prison and put it in a drawer for about a year. Then one day I ran across the piece of paper and for some reason decided I would write to him. I didn’t know if I would hear back and wasn’t sure what I would do if I did. Well, he did write me back and it began a connection with him that I had never had. We wrote about 2 letters a week for almost 2 years. I found his writing familiar in a way as if I had written it myself. There was a connection that I couldn’t explain exactly, was this the genetic thing that people say really doesn’t matter when a child is adopted? I had always felt very different from my mom and my brother. Not in a bad way, just different like they didn’t get me and I could never completely get them. And for the first time in my life I felt like someone really got me and I got them. It doesn’t completely describe how I feel, but that is the best I can say. I didn’t agree with everything he said and there are parts of his personality that I just chose to move past because if I had focused on them I might never have gotten to know the other parts. But there were parts that were like the missing parts of myself.

I went to visit him in prison about a year before he got out. I sat across the table from him in the visiting room and noticed for the first time that he had blue eyes. I have brown eyes and so do my mom and brother and I had only black and white photos of my dad so it just never stood out to me before. We realized that we both had the same funny ears, but he thought they looked better on a girl.

When he got out of prison my brother and I flew across the country to bring him to California with us. He never really felt comfortable living out west and eventually moved back east. He did get to come to my house once after my first son was born. He was pleasant to have as a house guest. There was something very homey about him. He would be up before me with coffee made sitting at the table. He helped around the house and mowed my lawn and in general seemed to like to keep busy. Of course I had to look past the 10 beers a day he would drink and the chain smoking….. after all nobody is perfect, right?

I was able to go to visit one time with my boys when they were small so he got to meet them both. My older son who tends to be somewhat guarded with his emotions and not one to hug someone unless he really knows him, ran up to him upon leaving to give him the biggest hug I have ever seen. I don’t know if he remembers or not, but I do.

The past few years have been more distant and we rarely spoke. I don’t know, I think we both were lazy about it. I allowed myself to feel like he should call or write me so I would just wait for him and it never happened. So finally we did begin again, it was a small attempt and unfortunately didn’t last long. We wrote a few letters and soon the letters stopped. With all the things going on in my life I didn’t slow myself down enough to make the effort to find out why.

I got a call from his sister on Tuesday to tell me that he was in the hospital and really sick with cancer, it had spread to his brain and probably wouldn’t make it much longer. I got to talk to him two days ago and hear his voice and told him I love him. I just wish I could have seen him one more time. I planned to fly out to see him, but got a call that it was only a matter of hours. Last I heard he is still with us but unconscious and I was able to have his wife hold the phone to his ear so I could say my goodbyes. I cancelled my trip because I am needed here at home and they told me I wouldn’t make it in time anyways and he wouldn’t be able to talk to me. So here I am up late writing this blog. I expect I will hear something soon and I hope I wasn’t wrong to cancel my flight. I’m glad I was at least able to have the connection that I had, as small and kind of broken that it was. He had a whole lot of flaws and some bigger than others, but I felt like I got to know this tiny part of him that was really sweet and that is the part I choose to remember and hold with me.

There has been some question as to whether Scott has ALS or didn’t the doctor in Hawaii say he didn’t have it??? Well, he was diagnosed in March with having ALS. ALS is a disease that you can’t just take a blood test and say definitively that someone has it or doesn’t have it. It is a matter of adding up symptoms and ruling out other things etc. If you look at it on paper it sure looks like it.

One thing I know is that things changed after his accident in 2009. Did the accident trigger the ALS? Did the injuries cause these symptoms? We have been trying to find this out. We found that the chiropractic helped with the choking issues and so far that is all that it really helped. Maybe some of his neck pain too? While we can’t sit back and only look at ALS because the doctors gave us that diagnosis we can’t ignore it either. We have to find a way to look at everything and move forward. It also seems like everyday there is some new piece of the puzzle handed to me and again we keep moving forward. Does he have ALS? the doctors at UC Davis  think so, could it be something else? Others have been misdiagnosed so  Who knows? They know so little about the disease can you really rule anything out?  If you are confused, welcome to my world and hang on for the ride. Love to you all, hope this helps clear things up a bit.

So it seems that they have found the cause for ALS. Of course I am not sure what this will mean for Scott. Does this mean that they will be able to find a treatment in time to help him? Maybe it will be something that can help the kids should they fall into the familia category of the disease as we are still unsure of whether or not this ALS is the type that is passed down genetically. If it is then the boys each have a 50% chance of developing it during their lifetime as well. How is that for sobering news?

I have had a few people and one in particular tell me that it is very possible that what is going on with Scott could be Lyme disease. Apparently there are people who are being misdiagnosed with ALS and actually have Lyme and that Lyme is treatable. We are not sure that it accounts for all of his symptoms but it seems like it could and why not check it out, right? Apparently you have to go to a doctor that does an extensive test and uses this one particular lab. Now I am reading things that this lab is under investigation. Do we still use the lab? There are people who were told by the traditional tests that they don’t have Lyme disease but this lab said they did and they had treatment that helped them, others maybe a wild goose chase and lots of money later, no help. Isn’t it still worth a try?

I feel like I am in a race against time. As I watch Scott slowly being able to do less and less I feel helpless as to what to do about it. Maybe there isn’t anything we can do. Why are we going through this? There are days that I have a handle on things. The cycle of life, the spiritual path of the soul etc and I do at times find peace in these things. Like they say nobody gets out of this alive! The day to day wears on my heart though and it wears on my strength as a human being. To continue to get up each day and take on whatever that day might bring forward at times feels to be too much to ask. I long for days when I got to worry about stupid shit and not the big stuff. I tell myself that I wouldn’t worry about that stuff now if things could be different. That I wouldn’t waste my time on stupid little things that don’t matter, but I know I would, it is my nature. As hard as I try.

I learned to replace the brakes on my car this weekend. This was brought about because Scott was going to do it and it was proving to be a big struggle for him and so I offered to help. I figured it was something that I might need to learn anyways. After all, I had learned to change a tire in driver’s ed but in all these years I had never actually done it and what would happen if I found myself needing to do this? I have just never learned to do anything to cars. Not that I felt that I couldn’t. More like I really didn’t want to. I have a mother who prides herself in being able to do anything that “the boys” can do”. This always turned me off as I don’t feel like I need to prove anything to anyone. I know I can do whatever I put my mind to and I see lots of women who do what men can do, so what?! So, this weekend I just simply did what needed to be done. I am still sore from the job and have lots of respect for anyone who does this work for a living or just in general without complaints. My brakes work great too! And we saved $500!

With all of this going on I still have the regular things going on like kids and laundry and cleaning and just general wanting to live my life. Alex is in 6th grade and apparently has entirely too much homework. He did manage to put a few things off to the last minute, but my goodness he is only in the 3rd week of school! He literally worked all weekend and is still not done. He still needs to finish the paper mache cover he is working on for one of his projects which at the moment has him sulking on the couch as he is overwhelmed by the fact that it isn’t coming out the way he had anticipated. I am just hoping that this doesn’t mean that we will be starting over when I get home from work tonight. My mind and body are burnt out as it is. I do long to go to work where I can rest and do something that doesn’t require new skills and enormous amounts of patience. I am so happy that I love my work even on the worst days.

A week from today I will start massage school. It seems crazy some days that I could be taking on even more with everything going on here. I do feel called to do this. I have really enjoyed learning, giving and receiving Reiki and would like to offer this as a service to others. Massage and Reiki do go hand in hand and I have this feeling I am going to uncover more things that I need to learn as well on this path. This will give me an additional way to earn income that can be flexible, and I need flexible right now! So, the next 6 weeks should be interesting as I stretch my being just a little more to see what it is capable of doing! Wish me luck and send me energy if you think about it, I will definitely be needing it!