In leiu of flowers, Peggy asked that donations to help those battling ALS be made as described on the Peggy and Bernie Project website (www.peggyandbernieproject.org).

Peggy’s long battle with ALS ended this morning at 1:40 AM. She passed away in her sleep peacefully and I had the privilege of holding her hand at the end. She carried the burden of her disease with amazing dignity and I hope we all carry a little bit of that with us as we continue on without her. Her and my Dad are together again, and I am sure they will be dancing for an eternity.

We will continue on with the Project to carry on her legacy and I plan to continue to use her Blog to share some of things she experienced and discussed with me over the past few weeks.

At this stage, breathing takes up most of my energy. Trying to do things as simple as talking and breathing, or swallowing and breathing, or crying and breathing are difficult to do (since I can’t stop the breathing, I minimize the other stuff). My air exchange is very poor and the lack of oxygen in my system makes carrying on these combined functions more difficult. On top of that, I take medications to combat the shortness of breath but the medications make me “loopy” and eating, talking, swallowing, etc. even harder. I still can’t figure out why people would pay money to obtain this “loopy” feeling.

And if that’s not enough, I seem to have taken on a nasty case of poison ivy; don’t ask me how because I haven’t a clue. So, more itching and pain in places that I don’t want it!

I’m still surrounded by people I love and who give me unconditional love in return and I am so grateful for that.

Peggy Ragan is an inspiration. Blessed with an indomitable spirit, a positive outlook and an unyielding faith in God, she lives her life to the fullest despite hardship and disability. Her journey is made possible by a group of volunteers who give of their time, their hearts and their skills. Click here to read more and view the article in PDF format.

Quality of life was addressed at all levels. What I walked away with  is to live each moment of each day to the fullest. This said, my schedule has been quite heavy to the point that Chris and Kim have had difficulty keeping up with me. They are usually one to two events behind me. People have expressed a concern that they will tire me out. I want each of you to know this is not a concern for me, for I will have lots of time to rest in heaven!

The next topic was shortness of breath and how this is affecting my speech. Because there is minimal air exchange in my lungs, it requires great exertion to carry on a conversation. The breathing muscles are now functioning less than 1% so the exchange of oxygen and CO2 is minimized. The solution has been to take a new medication twice a day which relaxes the muscles that affect my breathing. This has been a special blessing and it gives me a greater quality of life.

The next topic is swallowing. I’ve some episodes of choking on my saliva, not chunky food. I’ve been encouraged to take another medication and since I started this, have had no choking episodes.

The last topic is the neck spasms and limited motion in my neck. Although I’m told that our head only weighs twenty pounds, I know with limited neck muscle my head weighs one hundred pounds and is dead weight like a hundred pound cannonball! The solution is a sleek, lightweight neck brace. The prescription for this brace was written at the clinic. My angel and caregiver, Julie promptly got on the phone to locate one of these braces at a medical supply house. While she was on the phone describing the brace, the ALS representative said: “I have one of those in my car!”. She happened to pick it up at an ALS meeting the previous day. Isn’t it amazing how God orchestrates my life?

In summary, the energy expended was far less than the lessons I received form this arduous trip. God is truly present in this UVA team and my angel, Julie! I am such a better person because of the sunshine they all bring to my life. Every minute of every day is truly a gift of God’s love for me.

I enjoy visits from friends and family. Recently, Julie organized a baby shower for Kim, Chris and Emily with lots of good food and game playing. What was most dear to my heart was being around friends and family. The baby shower provided warm fuzzy feelings watching the joyful experiences of people sharing their excitement over new life. I love to watch the new parents enjoy their children. How proud and eager Chris and Kim were to share Emily and Sarah with everyone.

Recently I received a phone call from our godson Kerry who was vacationing on the Jersey shore. He wanted to schedule a time to come and visit. To my delight, he was able to come the next day and spend time with me. We laughed and joked and shared fond memories. He reminded me of the time when he was a little boy and he created a circus performance. Bernie and I received special tickets to come and watch this great performance. Kerry was the star magician. I am so grateful to Kerry to take this time from his vacation to be able to share precious moments of the past and the present.

My three cousins, Pam, Bonnie and Laura recently came from Rochester, NY to spend several days with me. These girls were toddlers when I was a preteen and teen. They shared some great stories about my frequent visits to their home as they were growing up. Apparently, I did not have a very good taste for fashion as a teenager for I would dress in peculiar outfits. I remember playing and taking them for walks and wanting to be a great help by doing wash. Somehow I got my arm in the wringer! We shared pictures and stories and laughter and tears.

Recently our church family gathered at 5PM Mass to present the chalice given in Bernie’s name to our family friend, Father Tim Sullivan by the Knights of Columbus. We as a family were asked by the K of C to choose a priest who would receive this chalice as a memorial to Bernie. It was received graciously and used at the Mass Fr. Tim celebrated with our parish family. After a meaningful homily, he then shared the Sacrament of Healing for me and requested that our church family continue the outpouring of their love and prayers as I go through the final stages of ALS.

I get pleasure from visits from family and friends. I benefit from visits from all my angels. Whether it’s church family, neighbors, angels or my Chris, Kim, Sarah, Emily or Patrick, I love to have them all gathered around me.

I’m the grandmother who is the ‘touchy-feely’ and longs to hold and squeeze and kiss those little cheeks.

I want to announce to everyone the birth of Emily Elizabeth born July 8th at 7lbs 14 oz. Of course she is the most beautiful sweet, angelic little grand daughter you’ve ever seen! See attached pictures. What a thrill it was to be able to touch her minutes after her birth! It wasn’t easy to get a totally dependent grandmother there on time! I arrived just 15 minutes before Emily was born thanks to caregiver, Marie.

Being a grandmother and being a person with disabilities gives you a different lens to view life. I know my Mom would have been very comfortable sitting in a wheelchair and having an infant placed in her arms momentarily. She delighted in talking about the grandchildren versus prolonged physical touching.

While being handicapped prevents me from being the touchy-feely grandmother I would like to be, I still get great comfort being around the children seeing, hearing, smelling and loving them. My favorite memory of being with grand daughter, Sarah, age 4 ½ was when we were able to spend time alone together on the back porch. Sarah was munching on peanut crackers and asked: “Grandma, do you want some?” And she was able to reach up and feed me one of her treats. That was a special moment in time that we shared together.

So, in the middle of the street we parked the car and parked my power chair close by. Using the hoyer lift I was picked up out of the chair and swung into the car. The only small difficulty was getting the legs of the hoyer lift under the car. But again, with determination I landed in the passenger seat and the hoyer lift was prodded out from under the car.

With safety in mind I was belted in and propped into a sitting position. And soon the wind was blowing through my hair.

Our destination this warm balmy evening was to get ice cream. But before ice cream we took a side trip to Chris’ home to show Sarah, Chris and Kim my current form of transportation. It was important for them to experience how the love of Jesus is transformed into the arms and legs of his angels here on earth. It is the grace of God that allows me to set aside fears, concerns and the “what-ifs” that many times can spoil the joys that are ours if we only open ourselves to the opportunity.

God’s grace is such a beautiful gift and what a beautiful gift for me to see the joy on the faces of Marie and Hal and Chris, Kim and Sarah.

Amazingly, it is not difficult to identify 180 blessings. Now I am not going to bore you with all of these but I would like to share the highlights.

I am grateful for the following:

5 loving caregivers and 80 angels who care for me on a 24/7 basis.

A church family who continues to support me with prayer and meeting various physical needs.

Our children who daily give me the emotional and loving support that I need in Bernie’s physical absence.

The privilege of enjoying a vacation, with devoted friends, for the first time without Bernie.

For a loving supportive neighborhood, who provide meals, yard work, smiling faces.

For the acceptance by family and friends, in spite of their difficulty in interacting with me, during what we know to be the end of my journey.

And for those who are not able to reach out, I am so grateful that I can understand …

For story time on Monday mornings and the opportunity to interact with the children as I read their favorite stories to them.

For the opportunities to attend church with different families in the parish.

For the ability to remain in my own home.

For God’s grace in accepting the stares of people, while I am being fed.

For loving inquisitive children who want answers about my leg braces and the unusual mode of transportation that I operate with my right hand.

We then decided to hit a couple places we missed the day before. Julie, Leslie and I wanted to check out the quilt shop only to find it was not handicap accessible. Julie and Leslie thought it was a great shop but there was nothing good about it because it was not wheelchair accessible. When they asked the salesperson about accessibility, she said they had none but she would be glad to take some samples out for me to look at. They decided against doing that but afterwards thought they should have asked her to take several samples out for me to look at and maybe after doing that 10 times or so in the pouring rain she’d get a clue she needed a ramp. It’s disheartening to learn that even in 2010 in the US, not all public locations are handicap accessible.

Next stop, Ben and Jerry’s for their tour. The factory tour was fully wheel chair accessible and the tour fun with “punny” humor, e.g., we saw a movie that was utterly informative. At the end each gets a free ice cream sample and then we went to the sales counter and got a few more free tastes.

Back at the homestead, we proceeded to make 5 different types of stromboli. I was delighted to be able to share our family recipe with Julie and Leslie as they prepared each from scratch. The air was filled with smells of garlic, onions, sausage, pepperoni, garlic, olives, garlic, artichokes and garlic. Each stromboli had its special touch and Bob tried them all. We drank wine, ate stromboli and shared the night away. Another highlight for our week.

Friday was our day to drive home. We said our goodbyes to Leslie just before 11 am and headed out. We chose a different route home, crossing Lake Champlain on a ferry.