From Peggy’s son Chris…

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.

It’s been about six weeks since my last blog and that was about my trip to the UVA clinic. I want to continue to keep up with this blog if for no other reason than to provide an account of my progress as a record for my family and for those in a similar situation. However, the focus areas, i.e., breathing and swallowing, that I talked about in the last blog have become an even bigger impact in my life. Even as this is being written, I have to provide a few words and my note-taker has to interpret and paraphrase the remainder of the sentence.

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.

It’s been four months since my last visit so I went for a follow-up last week. The clinic is a full afternoon visiting with the ALS team which number about nine people. I spent about a half hour with each team member so, as you can guess, it makes for a long afternoon. This takes a lot of energy to travel and meet with each team member and I sometimes question the value of this, but I always return feeling heard whether my issues are big or small. I try to prepare ahead of time what my focus might be. My focus this visit had four topics: quality of life, shortness of breath, swallowing, and neck discomfort.

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 visitors coming all the time. Visitors come in all sizes and they bring many gifts. I love the gift of children playing around me listening to their shouts of glee. This has become more limited because of my inability to talk and read them stories. Our story time on Mondays has become limited because of my shortness of breath and inability to speak in phrases and sentences.

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.

There are many types of grandmothers that span a whole spectrum of life and they range from grandmothers who enjoy living multiple miles away and have great enjoyment sharing pictures and stories vicariously. This lights up their life- to the fullest. And then there are other grandmothers who need the warmth of little arms around their neck with kisses and hugs. Other grandmother types fall in between.

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.

Last week it was suggested to me that I go for a ride in a red convertible. (Everyone knows my favorite color is red.) Now, how does one who is totally paralyzed, in a power chair, go for a ride in a convertible? God’s loving guidance provided the red convertible and the loving people who’s determination made this event possible.

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.

I have recently been reflecting on Bernie’s death that occurred six months ago, on Christmas day. Not having his physical presence has not become any easier with the passing of time. And so, I have started to reflect on the blessings that have been given to me since his death, 180 days ago.

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.

Thursday morning was a wet nasty day but plans were to do inside things so it didn’t bother us. We had to rush a little to make it to the Trapp Family Lodge for the 11 am History Tour. The Lodge is only about 2 miles from our condo but up the mountain on a narrow, winding road. The tour was a highlight of the week and we learned a lot about the real–”Sound of Music” Story. Actually the movie is, in Maria’s word’s, “not too far from the truth.” Christina, the daughter of the youngest original Von Trapp family (he was born here in the US after they moved here), was our guide. She provided us with several interesting stories and told us about all the family members, several of whom still live on the property (2400 acres). We watched a great documentary showing Maria as she re-visits Salzburg and shares personal memoirs of her life. After the tour, we ate lunch at the resort and enjoyed Austrian sausage, German potato salad sour kraut, and beer, all made on site.

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.

Wednesday morning was a beautiful sunny morning. Since we came back from Montreal the previous evening and got in bed late we had a leisurely morning getting up. After breakfast, Leslie, Bob and I went for a ride and walk on the bike path. The Caddi did not disappoint us and neither did my hand. Since I’m not able to run the controls on my Caddi for extended periods of my time with my fingers, I’ve started to use the web between my thumb and index finger. This seems to work well as long as my arm stays propped up on the arm rest. On this day Bob and Leslie attached a pillow to the arm rest with a belt and I was off. We enjoyed the path so much, we decided to go all the way to the foot of the mountains, about 2.5 miles. The big reward by doing this was getting to ride to and through the covered bridge near the path’s end.

We called Julie (cell phones are great) and she picked us up and we headed out to do the local tourist stuff. For some reason this is the home location for Cabot, Ben and Jerry’s, Vermont Teddy Bears and Green Mountain Coffee. The first stop was the maple syrup center where they boil (it takes 40 gallons of sap to make 1 gallon of maple syrup) and bottle the maple syrup. He only sells it out of this location. We then stopped at the glass blowing shop and watched a glass blowing demonstration. Next was the chocolate shop (limited free samples) and the Cabot cheese outlet (about 30 things to sample). The cheese made for a satisfying lunch. We were running out of time and had to choose between coffee and ice cream and guess which we chose. Wrong! We went to the Green mountain Coffee center. We figured Ben and Jerry’s was closer and We’d do it on Thursday when we would have more time. The coffee was a good choice because not only did we get free samples but they had a free concert with a banjo/guitar player and singer. We got to listen for about 45 minutes before we decided it was too cold and time for dinner. We ate at a Thai restaurant the banjo player recommended. As good as the food was, it was surpassed by the service and made for a nice evening.

Tuesday we went to Montreal. We began our day at 6 am to get me up and ready to leave by about 8 am. We drove the 2.5 hour drive to Montreal following all the computer and GPS map directions which took us over the mountains. We were amazed that at one point we were on a small 2 lane road which had no line in the middle and was barely wide enough for one car. Add some serious switchbacks and you get the idea that this was a challenge for my amazing van.

We finally got to our destination, Old Montreal, about 10:30. We immediately went to the the tourist information center where we got a walking-tour map and went on our walk around town. Our first stop was the Church of Notre Dame. It was beautiful inside and a real spiritual experience for me; the highlight of the day and it happened so early!

But lots of special moments occurred throughout the day. As lunch time approached, it started to rain and we were desperately looking for a place which would allow me to enter; most had steps which I could not get over with my wheel chair. We were blessed to come upon this unique little cafe built into the basement of an old building and gave the experience of being in a cave. And, the food was great.

After lunch, the sun came out and continued to mostly remain throughout the day. We first walked around the oldest part of old town and the narrow streets and sidewalks (some with bikes and trash cans on them) made it difficult to maneuver but we always managed.

We then walked out on the beautiful wharf area where we were treated to great views of some of the remains of the ’65 World’s Fair, i.e,., the large sphere and the unique-shaped condominiums. Perhaps the most amazing human experience was when we were going down this one sidewalk. We came upon a few tables and chairs set out so that customers could eat outside. As the workers saw me coming, they quickly scurried to move the tables and chairs to provide ample room for me to pass.

Finally, we ended our day with a drink at one of the restaurants on Jacques Cartier Place. In the peak season, this street is full of vendors and musicians but, as it is early in the season, only a few vendors and musicians were there. Again, finding a place to sit was a little difficult but one restaurant brought a table out to the entry area for us to sit and enjoy.

The day in Montreal brought back some wonderful memories Leslie and I have of our trip to Europe 45 years ago.
Throughout the day, I was amazed and pleased that my hand and my Caddi made it through the day; up and down hills, over a long distance and over some amazingly big cobblestone areas. I was able to drive myself through it all and the Caddi’s battery never seemed to be even affected