Almost a year!

Wow! I can't believe it has been almost a year since my last blog!!! I think I took a break due to my hubby but also due to my world being changed quite dramatically to where I should now have a "thyroid cancer sucks" blog :(

This entry will be more my blog but what I have planned will lead to more blogs about Alex and I can't wait!!

So, not long after my last post my world changed dramatically - A thyroid cancer diagnosis!!! I went to my 6 month check up with my dentist who does a cancer screen of the throat all the way down to the clavicle bone. This was one of those days where Simone was "sick" and I was just wanting it to be done quickly. He kept feeling around my neck and said "I think you need to have your thyroid checked". I was like not really worried but I called my primary care physician right away.

My primary care physician had an appointment for the next day. Blood was drawn and came back that my thyroid was operating fine. An ultrasound was done that showed nodules on both sides, which then prompted my primary care physician to refer me to an ear, nose and throat specialist. I had an appointment with him and he recommended a biopsy of both sides. The results of the biopsy showed stage 2 bilateral thyroid cancer (the highest for my age group)...more on that in a minute. That prompted surgery to remove my entire thyroid then radiation to kill any remaining cancer cells.

Here's the timeline:

10/6/10 Dr. Kondas (dentist)

10/7/10 Dr. Seiler/blood test

10/18/10 Ultrasound

10/26/10 Dr. Fuentes (ENT)

11/15/10 biopsy at Kettering Medical Center

11/17/10 cancer diagnosis

12/9/10 total thyroidectomy surgery at Good Samaritan North

2/8/11 radiation through Kettering Medical Center

2/14/11 body scan showed clear of cancer

ongoing follow ups with ENT and endocrinologist

Diagnosis....I remember it being a Wednesday afternoon. My cell phone rang as I was outside waiting for my daughter to come home from school off the bus. Thankfully my son, the Autistic child, was at tutoring after school. I am on the phone with Dr. Fuentes as Simone is walking towards me while he says "It's cancer"! I'll never in my life forget that! She notices something is wrong, although I am trying to keep it together, and says in a whisper "mom, I think I left my coat on the bus". I tell her I'll call the school and she went quietly in the house and upstairs. She stayed upstairs while I finished my call and then called the school. The first person I talked to was Mrs. Bell, the school secretary. Somehow I managed to get it out that Simone left her coat on the bus then broke down in tears hysterically. My husband was on a business trip and I had no one to talk to. She offered to go to the bus garage and get the coat and told Mrs. Walker, who had Alex, what was going on. Bless her! I then had to call my husband, who was in an airport in TX I believe where he was flying to another work location. Needless to say he he changed his flight plans and came home late that night...by then I was all cried out but he wasn't. Since the diagnosis I feel like it has been a roller coster ride and still continue to be as I have gained 20 pounds and am feeling miserable!

Again the feeling alone has overcome me! The need to accept all this is there but I don't think I am ready. The inability of those close to me to give a damn is unbelievable.

My new idea is to blog about Alex's new form of "therapy". He loves to write letters to people when he is upset. I talked to a friend in the publishing people and my book club and a local author. They all think a book of the compilations of his letters (which, by the way he thinks got mailed) is an awesome idea. However, my publishing friend recommends blogging instead of a book. That's the ongoing plan and I can't wait to get started!

Cara

PS I just had the realization that my daughter was getting ready to turn 8 when I got the cancer diagnosis. This is scary because my mom's mom died of cancer when my mom was about that age!!! I didn't die but still scary!

To blog or not to blog

So, it has been months since I last blogged. My husband is not in favor of my blogging and we had a discussion about it. My purpose for blogging is for other parents of Autistic children to read and hopefully feel they aren't alone. Also, my blogging helps me to feel that I am not alone because I know that there are other people in the Autism community that will find this and connect.

Alone, that is what I feel a lot of the time. In addition to really having a lot of alone time when the kids are in summer programing or are at school, I am often alone after the kids get to bed and my husband is on a business trip. I find myself angry a lot and not able to focus on positive things because I don't have a specific purpose while alone (or something to do that would not let me be alone).

I posted one day on Facebook that I am working on "acceptance". This is an ongoing struggle on many fronts. Is it acceptance of Alex? Does his disability require acceptance from me, family members and maybe eventually himself? Is acceptance of this disability ever something I can attain and should I be expecting that of others if I myself am having a hard time with it? Acceptance of being a stay-at-home mom and not able to find a job outside of the home? It has been 2 years of looking, preferably for a part-time job, and having people slam doors in my face...even by "my church". Acceptance of the way people have reacted to Alex and our situation or, even more so, not reacted. Acceptance that those I thought should have been there for me/Alex/our family haven't been there for me and will not be there. Acceptance of the continual disappointment. Acceptance that Autism is something Alex and our family will always live with.

So, that is where I am right now.

Summer is in full swing

It is hard to believe that tomorrow is July! Why does it seem that summer flies by when you are old but as a kid it seemed like an eternity?

June for Alex was a few days at TCEP a childcare place we use some during the school on a drop in basis. They do great things with the kids, including field trips! Yesterday they went to Ohio Caverns. Cosi is in the near future! For two weeks in June, Alex participated in Stagecrafters camp at the High School. They did a fabulous job learning Alice in Wonderland, Jr. At the end of the two weeks there were 3 performances. It was a rocky start at first but soon, Alex got the hang of it. The best, and worst, part was when they got to the unbirthday party song. Alex was in the group of kids playing musical chairs with Alex. K and I looked at each other and could almost not watch. We know Alex's competitiveness and worried that there could be a meltdown right on the stage. Wouldn't you know that his "part" in that scene was to pull the chair away from Alice at the last minute and win!!!! I'm wondering how long it took the directors to figure out that Alex should have that part!

July will involve more "tutoring" for Alex along with a camping family trip for a few nights. Both kids are also doing tennis in the park and enjoying that. Soon we will be buying school supplies, backpacks and shoes!

Summer...ahhh

Well, it is almost here....summer....the weather is great and how amazing I feel after a few days at the pool. The kids have their last school day tomorrow. I have to say that I used to feel very anxious about the end of the school year. I remember feeling so lost after Alex was diagnosed not knowing what to do with him once school let out. He was too young for "camps" and it just seemed we were getting into a routine with school and it was out for the summer. Not to mention the fear of regression.

My husband and I have always worked hard to get him programing throughout the summer including camps and therapies. This was not easy nor cheap but we did it. I feel now that we are on a summer auto pilot. We have out local childcare place - yeah TCEP - where the kids can go for a few days a week....we have our local pool....we have local teenagers that can help out when I need them....oh, and who can forget Mrs. Walker who wants to work with Alex throughout the summer and refuses to let me pay her. WOW!

So, that leads me to talk about my employment status, which is still unemployed :( I feel like I have the support structure there now to help me go back to work but it hasn't happened yet. I have wonderful people in the community working to find me job leads. I have a promising lead that I hope works out soon. Either way, I'm just going to enjoy my time with the kids this summer and hope it all works out in the end.

So tomorrow is the last day of school and I'm not anxious at all...We have come a long way!

A new season?

So, Mother's Day went pretty well this year. My hubby and the kids did well pampering me with meals and gifts. The biggest part was that I didn't cry at church!!! Simone loves to make me cards and can't wait to give her gift so I got it the day before :)

Alex has been doing much better at school lately and seems to be less antsy. I am so grateful for his teacher taking the time to work through hard times and communicate with me about what is going on. I also can't say enough about his teacher from last year...Mrs. Walker....she took my SOS call and went to work. She's been keeping Alex after school occasionally to work with him on his reading and one day when I was just stressed out (and he was too) she kept him for 3 hours - WOW!

Mom is still trying to decide what to do with her life. I feel as though I am verging on a new season of my life where I should do something for me. I thought that something could be a part-time job but maybe it is a full-time job. I've put my name in on a few things and am hoping that the right thing happens. We shall see. I have had many people tell me that they see me everywhere in the community, which makes me happy. I've enjoyed getting to know Tipp and in only 18 months feel like we have made it our home.

As I write this I hear Alex singing all the songs from the Kidsbob 17 album....he is talented! Must get that from his father (well maybe the voice but his moves are mine!)!!

Mother's Day

Hmmm...it is another Mother's Day. This day over the past few years has been difficult for me. Usually go to church and hear this message about being mothers, etc. and cry. I cry because I feel like my mothering is challenged more than other mothers. I feel like I don't do a good job with the mothering (see last post). I cry because I feel like the support from the mothers in my life hasn't been there for me while I am being challenged. I feel bad that I want time to myself often on Mother's Day and my wonderful husband has given me that a few times (taken the kids away so I have some quite time). Why would I want to not be a mother on Mother's Day...??? Yet, I saw a mom post on Facebook that she wanted a house where the kids didn't argue so taking them away would be the answer...maybe I'm not the only mother who wishes for that on Mother's Day.

This mothering thing, specifically the mothering of Alex has taken a lot out of me and required a lot of me specifically the last 7 years. Sometimes I am just so tired/worn down. I even feel like screaming "Is it my turn yet? When do I get to do something for me???" I also wish for more than one Mother's Day and yet, wondering if mothering every day is just that...Mother's Day.

Why do I feel like a bad mom?

Wow! What a week! Well, maybe more like a two weeks. It started with what I now call the infamous baseball incident. Alex has been really interested in watching our local high school baseball team play. One game, they let him keep a ball that he later slept with and took to church with him. He then proceeded to loose the ball down the sewer drain in the street. One thing led to another in an attempt to console him (including a trip to the local fire station) ending with the team signing a ball for him after a game (they are such wonderful people here...his principal has a son playing on the team and his aide is one of the coaches with a son playing). I felt horrible though for the way I handled his obsession with the ball. Yea, yea, yea, I know that "typical" children have things like baseballs that they obsess over. Those with Autistic children know what I mean when I say they obsess..it really goes beyond obsession. It simply wears you down.

I think the most frustrating thing is that it seems to me that all of the "dealing" with Alex falls to me. I am the one who is always here. I love my husband but he isn't always here and he wasn't here when the ball went down the sewer. He wasn't here this week when he didn't have his AR book in his backpack and Simone didn't have her lunch and he spilled syrup on his shirt requiring me to bring all of these things to school. The thing I am struggling with the most is the feeling that I am dealing with all this alone. I know deep down that my husband does what he can do when he can do it but others close to me are continually letting me down as well on much deeper levels. So I feel, once again, I am doing it all or more importantly maybe I am doing it alone. Now, it isn't anyone's responsibility to raise my children but my own. Don't get me wrong, I know that. However, if he had cancer, would everyone act as though it wasn't there? Would they think I needed help? Would they ask me what he or I needed? I often wonder.

This week was Alex's first time taking standardized testing. I was nervous myself so I can only imagine what it was like for him and the other kids, teachers and parents. This had to be the worst week for him. Answering questions in a format he is not used to the material being presented in. Not having his normal routine to his days. I tried to be supportive but after being called into the school twice this week and seeing him agitated after school....and today especially looking totally wiped out walking home from the bus stop, I cried. He even let me hold him after school today as he cried (and I continued to cry) and said that he wanted to "quit school". I had to talk him into going to tennis today after school, thinking the release of energy would be good. He was frustrated for not "winning" in their drill at the end of the class. He then wanted to practice by bouncing the ball off the house and lost the tennis ball in the gutter. Again with loosing a ball!!! You have got to be kidding me. Husband again isn't home to help and he goes to bed crying with me not being as supportive as I should have been.

I'm still struggling with the whole should I work thing and the more I think about it the less confident I am that I won't have to put everything on hold again for my children, husband and especially Alex. However, I feel that I am not happy personally/with my identity and where I am and if mom's not happy then nobody is happy.

On top of all of this, I have become obsessed with the new TV show Parenthood. The parents dealing with their child with Asperger's syndrome is sooooooooo us. When I watched this week's episode where she was asked to work for old friend running for elected office like she used to do, she was so excited and after being offered a job, had to turn it down feeling that she needed to be home I found myself sobbing on the couch. I was crying to the point that my husband couldn't stop me. Deep down I know that I am blessed that I not in a position that I have to work but why do I feel so awful that I feel like I can't work?