Sunday, December 20, 2009
In the past 24 hours we have had a whirlwind of activity. Not the kind you normally get with shuttling the kids here and there. Real life family fun activity.
We visited Heather Ridge and visited the Polar Express, Santa, cookies and holiday lights. Free
Attended a concert at KSU Stark. Free
Attended another concert at UA. Tuba Christmas. Megan played! Free and great fun.
Geocached with the family all over the University of Akron. Free.
Dinner with coupons at the Spaghetti Warehouse. Less than 10 per person. Stuffed.
Another concert at Nativity church. Christian rock band. Free.
Whew. Are we beat!
So why can't I sleep?
Thursday, December 17, 2009
When Adam was only a toddler, I organized a Town Hall meeting with our elected officials including State Representatives and State senator and families with children with autism. We also arranged appointments in Columbus with our elected officials to discuss help for our families.
Recently the House of Representatives pass HB 8 addressing insurance and autism. I have not been directly involved with lobbying for many years so I was unaware of the bill until a few days prior to it going to the floor. Let me back up, I used to work for the chamber of commerce. For more than ten years I visited Columbus working with legislators and business concerns. I left when I reached burn out.
So what does this have to do with making a difference?
When I received word that HB 8 was going to the floor, I eagerly wrote several emails. Simple really. I spoke about my previously not supporting legislation that would burden business, but after experiencing the cost of raising a child with autism, I have changed my mind. As many of you know, therapy for a child with autism can reach into the hundreds of thousands. Bankrupting families.
The good news is that the bill passed in the house. The better news is the personal phone call I received from my State Representative Scott Oelslager. He called me late on Friday night. Whether or not he remembers from my chamber days (that was more than ten years ago) he was moved by my email. He also remembered the town hall meeting from years before. A republican, he was one of the few that voted for the bill.
I have sat here the past few days not sure what to think. First, thank Rep. Oelslager for supporting our families. Second, we do make a difference. I only spent a few hours on the emails. And what a difference it made.
Now it's time to work on the Senate.
Tuesday, December 8, 2009
Back to the priest. He told me that fear was the work of the devil. Of course he phrased it more elegantly. But the essence was that God would not work through fear but through love. He said that to give in to fear was to concede to the devil.
That may seem simplistic but for me it was quite a revelation. Fear was the work of the devil and his way of keeping us from drawing closer to God.
If you think about it, he's right. To live in His love is to be love. To love others, yourself and to live in hope. Fear is the product of worry, concern, hate and lack of faith.
I bring it up because I have a good friend who is on the brink of great success and she has a fear of success. I get that. Success means accountability. And it also plays into our shared history of Catholic guilt.
Her fear reminded me that fear doesn't come from fear of health like mine, but from other places as well. It reminded me that fear can spring from anywhere and we really need to watch for it.
Fear versus hope. An eternal struggle.
I couldn't be happier. This is the first time that a suspected mass is actually nothing.
Wow, does that feel great.
Wednesday, December 2, 2009
Neither of the surgeons seemed overly concerned with the mass in the uterus. So I am feeling confident in their confidence.
Yet they are still cautious. I had more tests yesterday.
Ready for a story?
I had a inter-vaginal ultrasound. For many women in the world, that might sound like a good time. In case you wonder, it is exactly like you think. A wand up there. If you think about it, it's paid for by insurance companies and delivered by a professional. In some states that would be illegal.
When I reached home, the cramps started. I didn't know it would happen so I was surprised. Women are truly not meant for something that big for that long. Regardless of what you heard in sex class.
I wondered if I should have left a tip on the counter.
Monday, November 16, 2009
Why the big deal? Despite the anxiety and worry that I have in the back of my mind, I really feel OK about everything. Maybe it is just shock's way of coping but I am OK with that.
I am very calm and positive. I am taking the right steps towards this appointment and occurrence. This is not the end. I am not going to believe that it is.
I will keep praying, believing and hoping. I hope you do as well.
Saturday, November 14, 2009
I truly believe that this mass is not cancerous. Yet knowing the aggressive nature of this disease I know that I need to be prepared for the worst. Perhaps it is because of my father's funeral. Or that I recently found (by accident) my funeral file from last year. Just before my big heart surgery I made initial funeral plans.
In order to keep positive I need to stop thinking about my funeral. So I thought that writing it out would remove it from my mind. Then I can focus on thoughts of hope.
So you don't have to continue reading but I do ask for your prayers. They made the difference before. I know they will now.
I want an evening viewing just before a mass at Queen of Heaven with Father John Zapp from Holy Spirit Parish in cooperation with Fr. Dave from Queen. They each have aided and guided me over the last few years for which I am grateful.
I would love the Sent Forth band to play for my funeral. I would like the traditional songs like Be Not Afraid to be played. I also would love to have Kind and Generous from Natalie Merchant.
I want everyone to dress in bright colors. Do not wear black. This is a celebration of my life. Remember where I will be and I will be there for you.
I want to be cremated and my ashes scattered over the ocean. I would love to have all of my family together for a weekend -- Jim, Megan, Sarah and Adam, brothers, sisters, aunts, uncles and in laws - at the beach on the Outerbanks. I want it to be a party with food, drinks and kids running like crazy. At some point, sprinkle my ashes over the water and have a drink. That's my kind of wake. Sun, sand and alcohol.
I was right. I do feel better. Thanks for listening.
Sunday, November 1, 2009
My father died yesterday. Peacefully and without pain after years of pain and loss of dignity. We re all feeling a strange emotional mixture of relief and grief.
I think because of his death and my recent brush with another mass have made think of the how precious our time is on earth.
Actually, we can think of that as death's gift. Death as a reminder of life.
Tuesday, October 27, 2009
He did an internal ultrasound - yes, that is as icky as it sounds. Despite the jokes that are leaping to your mind. And he found a fibroid.
OK, that is not a big deal in itself. Unless you pair with my history of little lumps that turn into big deals. The docs say, hey no problem let's wait and see. The next thing you know you are on the table having open heart surgery.
So here it goes again. I am trying to not to think of the obvious like chemo failed and this is a new tumor. That concept is just too scary.
I am asking for more prayers. I know I will be praying.
Thursday, September 24, 2009
The deck turned out wonderful. I rented a sander and a great time sanding the deck. A real Tim Allen moment. I wanted to grunt and drink a beer at the same time. I then purchased church pews for minimal money (the church was putting in new ones) and anchored them to the deck. I coated them with poly and drilled holes for drainage. But the best part was the table I made.
Using the kneelers and missilette holders, I made a table. A custom, unique patio set. I will brag, it looked very cool.
Now I am working on the bathroom. I fixed the leaky shower, replaced a faucet and am laying a floor. Of course, I am using easy peel and stick tile. And of course, it is taking forever to my children's' chagrin. They really want to use the bathroom.
But the bottom line is, I'm doing it. I am moving forward, feeling optimistic and getting stronger every day. With very little thoughts on cancer. Yippee!
I am also writing up our adventures on my website www.autismtravel.org. I love the therapeutic feeling of blogging.
Tuesday, September 8, 2009
Where haven't I been is a better question? We returned from our trip in early July and for the past few months I have been focusing on unpacking, recuperating and in fact, planning for the next trip!
A surprise for me was the number of families who said that what we did - a long trip out west - was what they hoped to do. Their concerns were the same as our own with different twists along the way.
I came to the realization that the one good way to help people travel with their children is to demonstrate just how I did it. I hope to over the next several weeks write about the planning stage as well as the actual trip. How did we come to the decision to visit where we did? Why did we take a RV? How much did we spend? How did get the time away? How did you plan for children neurotypical and autistic? How did you accomodate for your own disabilities? and so on.
Then I will turn to the actual trip itself. Did the reality live up the expectation? Did the budget live up to the reality? How did we cope with problems? Was the trip what we hoped for?
My plan is to post something everyday so I invite you come back frequently. I will keep the posts short or like my mother says -- cup of coffee short.
The goal is to provide you the reader with some insight into what worked, what didn't and how you can do the same.
If you are interested, please visit http://www.autismtravel.org/apps/blog/
Tuesday, July 28, 2009
In May, as all parents know, it was end of the year crazy. One awards banquet after another. Heaped on top with exams, partys and graduations. Then we sprinkled the month with getting ready for a month long trip out west.
Of course, in June, we were gone for a long time. I say a month but it was really only three weeks. We traveled in the southwest in an RV. We visited Mesa Verde, Painted Desert, Canyon de Chelle, Grand Canyon, Zion, Bryce, Arches and the Rocky Mountains. What an incredible trip! I will tell you more over time as I dribble stories over the this blog and the Autism Travel website.
July has speeded by with parties, unpacking, cleaning and camps. On top of that we came back to computers infected with a very nasty virus and spyware. I spent hours every day trying to debug and save our files. In the end, I scrubbed the computer and reloaded everything. I added memory and now I am back where I started. Thankfully, I have the laptop that works and I continue to work on the desktop.
So here's to old friends. And all the new ones I will make.
Wednesday, May 6, 2009
While I know that I need to deal with it, I really don't want to.
I am going to side with my conscious on this one.
Tuesday, May 5, 2009
I can replace negative thoughts with positive thoughts. I do that a great deal anyway.
I can meditate more. Except a good portion of my day is spent in meditation.
Exercise works. But I find that boring and tend to think more negative thoughts. Kinda self defeating.
So I am still thinking about it. I know that given time the answer will come. I just have to trust.
In the meantime, I cleaned a few closets. That does feel good.
Thursday, April 30, 2009
What does this mean? And why am I writing about it? My house is a mess. For years now. Granted I have been a bit busy the past few years. And my energy level is decreased. All of which adds to my Catholic guilt on not keeping a neat house.
I want to start cleaning my house but I haven't been able to figure out what I am avoiding. I know in my heart that there is some resentment into my not being able to work. I want to work. I have always intended to work. That is a hard dream for my ego to give up.
So why all the TV watching or book reading. Or general avoidance. I think that is the key word avoidance. When I engage in menial tasks like vacuuming, straightening or folding, my mind wonders. My mind is allowed to wonder and think about my life. Thoughts that I would prefer to avoid.
So I watch or read and keep my mind of the other thoughts. I figured it out. Now I just need to figure what to do about it.
Monday, April 27, 2009
Travel across country camping. A very long, multi week vacation driving to national parks, monuments and historic cities. Sharing every moment with my family. In the works and we hope to leave sometime this summer.
Deliver a comedy monologue at an open mic night in a comedy club. I think that I will try that this fall. I hope my friends will come and keep me from running off the stage!
Travel to Egypt to see the pyramids then onto Greece to see the Parthenon. Not yet.
Travel through Europe; especially Germany where my grandmother was from and visiting my distant cousins. Again, not yet.
Zip line over and through the jungles of Costa Rica. Watched a video of it. Does that count?
Whale watch off either the east or west coast. Perhaps we can do that on the trip out west. I may have missed this one. I should have insisted on taking a trip when we were in Boston. I know that I will get another chance though.
White water rafting through the wilds of PA or WV. This is still a good possibility.
Co host a radio show for just one day. Just like I did in college. Any takers?
Snorkel off the Great Barrier in Australia. Then onto hiking in New Zealand. Or the Bahamas - I do want to see the Red Rock in Australia though. But I won't be picky. OK, OK, I first need to get a passport. No big huh?!
So, that's my update. How is your bucket list coming?
It's never too late. Or too early.
Sunday, April 26, 2009
That led to the explanation that I have been avoiding for two years. My real prognosis. The lack of survival of anyone with the same metastasis beyond five years. Really only one person who has been named cured -- and they didn't have any metastasis. Also the real lack of options now that I do not have any real lung left to remove. Yup, bleak at best.
All week I have been in a funk. My mind keeps going back to that conversation. I couldn't understand why. I have come to terms with it. Why the big deal?
My daughter was the one who came up with the explanation. By naming it to a relative stranger, I was naming it myself. I was forced to face it again. After so many months of only looking forward.
Now I am forcing myself to be consciously change my mind every time I think of that conversation.
Out of the mouths of babes.
Wednesday, April 22, 2009
It is time to celebrate! I will be a year tumor free on May 7th! A whole year! YEAH!!!
I have truly been focusing on becoming healthy again. My hair has grown back. I am still overweight from all of the steroids -- but I am working on that. I think that I have licked the fatigue issue - tremendous fatigue! Napping everyday and all day fatigue. I went to see several doctors and everything has come back normal. And they checked everything! That made me feel good and I know with more exercise and diet, I will become energetic. It doesn't happen overnight.
Especially when you think what my body has been through -- open heart surgery, leg surgery, lung surgery, radiation and chemotherapy. All within two years. I am not writing for sympathy but reminding myself that recuperation will take time.
I hope to be writing more and perhaps doing some online writing. As a family we are getting ready for a long camping trip out west. My dream come true! I can truly say that I crossing off half of my bucket list!
Tuesday, January 20, 2009
NYC was incredible. We had a great time. The three of us just hung out, went to musicals, strolled museums and ate like pigs. The only problem - from my daughters perspective - is that I snore at night. Sorry!
Here are some highlights: On the tixs board, Phantom was listed. We had great seats but the people beside us had bathed in perfume. I wasn't able to breathe and my eyes watered. I asked for another seat and miraculously, we were moved to the front row!
Saturday night we went to the Olive Garden on Times Square. There was an hour and a half wait. After watching the square for fifteen minutes, we moved to another less crowded area and bumped into a waiter. He asked how many of us there were and gave us a blinking disk. We were seated right away! A great table overlooking the square!
Our first room in the hotel was very musty so I asked for another room. We were moved to the same class of room but it was in a corner with a hall way and walk in closet. Much larger!
Here is the best part (next to NED) -- On the way back from the Metropolitan Museum of Art, carrying luggage in 10 degree weather, we finally flagged a taxi. I didn't think I would make the walk of more than 20 blocks. The taxi cab driver asked us who the presidents were from Ohio. Of course the girls knew thanks to Mrs. Cowley and Mrs. Heighway at Greentown Elementary. The driver then asked who so many presidents from Ohio. I replied that it was due to Rockefeller and oil in Cleveland. He gave us the ride for free!
We truly had a blessed trip!
Thursday, January 8, 2009
Now don't get me wrong -- I think living the remaining time is important. Incredibly important.
A series of events led me to read The Secret. I took to heart the passages about living a grateful life. I made a list of all that I was grateful. I told myself thank you every morning when I woke up. And I felt and still feel great. Positively joyous.
I also started meditating. Through the meditation, I began to think of more than the easy stuff to be grateful for. I started to think about the hard stuff. I began to think about all of those issues I have carried for years if not decades. I thought of fighting with my brother; sibling jealousy; rape; suicide; cancer; death; autism and every issue that I have faced in my 43 years. Old wounds that most people hide or don't talk about. How could I be grateful for those horrid and scary issues?
Through more meditation, I was able to come up with answers. Beyond the obvious if it hadn't for those issues, I wouldn't be here today kind of answer. I then wrote all those on a piece of paper and burned it. What a marvelous release!
Ever since that time, I have been fighting with myself to keep those thoughts of death out of my head. I have tried very hard to reprogram my mind for hope, health and healing. I am making progress. Those old worn tapes in my mind are starting to dwindle. Granted, I do have more stress today than before. But then again, I am less than a week from a trip to NYC and scans.
I had breakfast with my autism mom friends today. I talked all about my relevations - or my karma dharma phase as my daughter puts it. A good friend had trouble with the book because the book states that all that is bad that happens to you is brought to you due to your thoughts.
I believe that. She said how did that bring autism into her life. She really stumped me. Yes, I had thought about how I am grateful for autism but how had my negative thoughts brought autism to me.
That is when I realized my thoughts hadn't brought autism to me. Autism is a condition of my son. Most likely genetic - no different than a person's hair color. While I can't control the autism, I can control how I react to it and help him with it. I can work with him and send him positive thoughts, support and encouragment. I can do everything in my power to help him and put the rest in the hands of God and the Universe. I can also have hope. I can state my desires and intentions for his continued improvement and believe that God will provide. I did not give him this condition due to bad or negative thinking. I am giving up the guilt from this issue. I am not going to own that anymore.
You may be wondering about the title, embarrassing but necessary. I have been thinking of writing this blog for the past week. It is hard for me to write about all of those past issues - they are embarrassing. Yet it is necessary for me to write about it. It is like taking off a bandage - you need to pull it hard and get it over or the pain will linger. I have let linger far too long. By stating it publicly, I am letting it go.
Sunday, January 4, 2009
I changed the name of the blog as a reminder of all that I have now. A thank you to this new chance I have been given at life. Thank you to everyone who has read the blog and supported me. You have been an anchor in in a difficult time.
Saturday, January 3, 2009
That may be a challenge. Yet one I am willing to take. I am going to start today and be grateful for the cancer. If not for the cancer I wouldn't be where I am today.
It is not just the small things but the large as well.