Monthly Archives: August 2013

Gratitude Today

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My brother Jim said he would trade places with me if he could, but I feel that if anyone can handle this shitty ALS diagnosis I’m the perfect candidate because I have so much.

Here are a few of the reasons why I feel this way:

  • I have strong faith that things are happening to me for a great reason and I have to trust, without clarity, that I believe in it.
  • Mark and I are both retired so with Mark’s loving help we are able to function normally.
  • We live in a handicap assessable home which is really bizarre because we had intentions of building a five level house after we sold our home five years ago.
  • Kelly, Chris and Tucker live near us and Kelly uses her nursing skills to help me and keep me organized with my medical care.
  • Mark and I having no financial worries and wonderful health insurance.
  • Corey encouraged me to write this blog and share my stories which has brought so much meaning to my life because of the beautiful responses and my faithful readers.
  • Bryan, Ashley and Pongo live two miles away from us and always stop by with great big smiles and giggles to brighten our day.
  • I am happy for Chad because he has Devin who is helping to bring great love and balance to his life.
  • I am happy for Corey because he has Bevan who has experienced so much diversity in his life and can help guide him.
  • I am happy to have our wonderful grandsons, Cole and Peyton, because they seem to adapt beautifully to what life serves them.
  • I have the best family and friends in the world which makes for a great support system.
  • I’m able to function everyday with little or no side effects from medicine I am taking.
  • I am grateful I didn’t have to endure a painful surgery, chemotherapy or radiation that some folks have to go through.
  • And finally, I am grateful that my disease has allowed me time to adjust to my weaknesses and allows me time to spend with the people I love.

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Great Advice

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Recently Chad’s girlfriend Devin sent me some great advice from an old column written by Regina Brett and I thought it was worth sharing.

1. Life isn’t fair, but it’s still good.

2. When in doubt, just take the next small step.

3. Life is too short to waste time hating anyone.

4. Don’t take yourself so seriously. No one else does.

5. Pay off your credit cards every month.

6. You don’t have to win every argument. Agree to disagree.

7. Cry with someone. It’s more healing than crying alone.

8. It’s okay to get angry with God. He can take it.

9. Save for retirement starting with your first paycheck.

10. When it comes to chocolate, resistance is futile.

11. Make peace with your past so it won’t screw up the present.

12. It’s OK to let your children see you cry.

13. Don’t compare your life to others. You have no idea what their journey is all about.

14. If a relationship has to be a secret, you shouldn’t be in it.

15. Everything can change in the blink of an eye. But don’t worry, God never blinks.

16. Life is too short for long pity parties. Get busy living, or get busy dying.

17. You can get through anything if you stay put in today.

18. A writer writes. If you want to be a writer, write.

19. It’s never too late to have a happy childhood. But the second one is up to you and no one else.

20. When it comes to going after what you love in life, don’t take no for an answer.

21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don’t save it for a special occasion. Today is special.

22. Over prepare, then go with the flow.

23. Be eccentric now. Don’t wait for old age to wear purple.

24. The most important sex organ is the brain.

25. No one is in charge of your happiness except you.

26. Frame every so-called disaster with these words: “In five years, will this matter?”

27. Always choose life.

28. Forgive everyone everything.

29. What other people think of you is none of your business.

30. Time heals almost everything. Give time time.

31. However good or bad a situation is, it will change.

32. Your job won’t take care of you when you are sick. Your friends will. Stay in touch.

33. Believe in miracles.

34. God loves you because of who God is, not because of anything you did or didn’t do.

35. Whatever doesn’t kill you really does make you stronger.

36. Growing old beats the alternative.

37. Your children get only one childhood. Make it memorable.

38. Read the Psalms. They cover every human emotion.

39. Get outside every day. Miracles are waiting everywhere.

40. If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.

41. Don’t audit life. Show up and make the most of it now.

42. Get rid of anything that isn’t useful, beautiful or joyful.

43. All that truly matters in the end is that you loved.

44. Envy is a waste of time. You already have all you need.

45. The best is yet to come.

46. No matter how you feel, get up, dress up and show up.

47. Take a deep breath. It calms the mind.

I love and agree with all 47 suggestions but #16 hits home the most right now. I’m trying with all of my strength to choose living.

Thank you, Devin.

The Chariot

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Mark and I have always been blessed with many amazing friends, but I continue to be awed by the outpouring of kindness, love and support that’s been flowing our way lately.

Our friends Chip and Colleen Vander Wier read my story about The Bench and offered to build me a cart so I can continue to visit The Bench at the top of the dunes in Snug Harbor State Park when I can’t walk anymore. They decided to call the cart “The Chariot.”

On my birthday in July, Colleen sent me a message that contained a quote from a theologian named Richard Rohr:

“Faith is not for overcoming obstacles; it is for experiencing them.”

It appears to me that you are living your faith as you overcome new everyday obstacles with grace and dignity from a place of overflowing love! Thanks for being YOU and sharing YOU with all of us!

If it wasn’t for all of the love and support for me and my family, I’m sure we wouldn’t be overcoming obstacles, especially with grace.

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Billy Joel

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Our family listens to a lot of Billy Joel. Corey has always loved him and Kelly got into him after Corey bought her a ticket to see him in concert at Madison Square Garden when she and her best friend Megan were visiting him on spring break while he was at NYU. And then Mark and I started listening to him when we went with Kelly, Corey and Megan to see he and Elton John perform together at Wrigley Field in Chicago a few summers ago.

Anyway, the reason I mention Billy Joel is because when Corey got home last month he said he was listening to a song on his flight to Chicago and a particular lyric stuck out to him in reference to what’s been going on in our lives recently.

The words are from “Keeping the Faith” and they go like this:

“‘Cause the good ole days weren’t always good and tomorrow ain’t as bad as it seems.”

As this illness progresses I think that’s a good thing to remember. So far, none of my tomorrows have been as bad as I thought they’d be when I was first diagnosed because every single day somebody reaches out with a thoughtful phone call or sends a card or drops by with a kind word or a hug.

When the kids were little and they didn’t want to get up and go to school, I would always tell them, “You’ll be fine once you get there.”

I’m starting to believe that myself.

Inconsistent Parenting

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As parents, we all try to do the best we can, but most of the time we’re learning as we go.

On Chad’s 16th birthday, he woke up anxious to get his driver’s license. Chad has always been intrigued by motor vehicles and loved driving when he got his learner’s permit, so Mark anxiously drove him to the DMV to get his license. When they arrived, the license bureau was already closed for the Christmas holiday, even though it was only December 22nd. We were all so disappointed for Chad because on December 27th he was scheduled to leave the country for six months to be an exchange student in Brazil and wouldn’t be able to drive until he got back. With that in mind, Mark made a pretty radical decision. He told Chad that he could take our car and drive to my parents’ house, which was a couple miles from our house, even though he didn’t have a legal driver’s license. I was surprised that Mark let Chad drive because we were always pretty good at following the rules.

Even though we bent the rules for Chad that one time, we were always pretty strict with him because he’s our firstborn. As Kelly and Corey and Bryan came along, we softened a little bit more with each one. It’s probably because we got tired, but we definitely were not as strict with Bryan as we were with Chad.

Like his oldest brother, Bryan was also an exchange student and spent a year of high school in Germany. Mark and I decided to visit Bryan in Germany for his 17th birthday and found ourselves in Munich to celebrate. We all checked into a cute, family-run hotel and decided to go out on the town. At about 10:00pm Mark and I started getting tired, so we all walked back to the hotel. Of course Bryan wasn’t ready to call it a night and said he was going to an Internet café to email some of his friends back home. The hotel staff had only given us one key and at 10:00pm the front desk was already closed, so we asked Bryan to lock us in our room. It was an old hotel and you could only use a key to lock the door, both inside the room and out, so Bryan locked the door on his way out and said, “I won’t be gone long.” and Mark and I went to bed.

Around 1:00am we woke up and Bryan wasn’t back yet and we got worried. We got out of bed and tried to figure out what to do. We couldn’t go out and find Bryan because he locked us in our room and took the only key, so we tried to use the phone but the people at the front desk had gone home for the night. We tried to call Bryan’s cell phone, but the only response we got was “This call is forbidden.” All we could do was look out the window and hope that Bryan was safe. We were so worried.

Needless to say, Bryan wasn’t worried at all. He finally came home around 3:00am and Mark and I were ticked. After going to the Internet café, he decided to go to a bar and celebrate his 17th birthday. There he met a police officer and they chatted until three in the morning. We could have killed him.

The next day was a little quiet at first but we gradually got less and less upset as the day went on and ended up having a great time. I know we let Bryan get away with too much, but I think he turned out okay.

Despite all of our inconsistency in raising our kids, the one thing that Mark and I were consistent about was loving them and making sure they knew it. I think that’s the most important thing you can do as a parent.

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