For a Few Pennies

My husband can have fun on a dime. Or in this case, the cost of gas alone.

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?

Make A Difference

Here in Ohio, we have worked for a long time in reforming insurance especially in concern with autism. Most states have a requirement that autism can not be excluded from insurance coverage. That is not the case in Ohio.

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.

Fear

Several years ago I laid in hospital and spoke with the hospital priest. I remember as if it were yesterday. The priest was african american with a thick accent. He was so spiritual and inspiring. I certainly need it at the time. I had been waiting for the biopsy results and was in the hospital due to a severe drug reaction.

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.

Good News

I talked with my physician today. They compared the size of the mass to the last exam and there appears to be no change in size. YIPEE! I scan again in six weeks to verify but overall, everything looks great.

I couldn't be happier. This is the first time that a suspected mass is actually nothing.

Wow, does that feel great.

Fifteen Days

When I see the date November 16 since our last post, I marvel at how quickly time has passed. I have since been to NYC, I have good news and OK news. The good news is that my scans are clear. The lungs look good and the rest of the body is clear.

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.

Good Friends and Reflections

I just spent a nice few minutes with my friend Shiela. I also spent an hour in quiet reflection in the Adoration Chapel at Queen of Heaven.

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.

Lengthy, Depressing yet Necessary

I reached my surgeon in NYC, the head of the department, and he agreed that the spot was worth a second opinion. He recommended a gynelogical oncology surgeon. So next week I am off for a full check up. I do not know what he will recommend but there is one thing I do know. If it is cancer, my options are limited.

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.