I just received a note from Betsy and Rusty. It's been such a tough year for them, I haven't wanted to bother them for news, but the following is from a letter they recently sent out:
“The last year has been very hard for our family. The shock of our home being taken by the fires and what it meant for us was huge. After securing a temporary residence, we needed to decide if we would rebuild or must purchase another home. We were overwhelmed by the stress of having lost everything, including the patterns of everyday life. After researching the different steps of rebuilding, we realized we could not afford to rebuild and would have to purchase another home. We then started looking for a house that would be conducive to Ross’s continuing progress in cognition and motor skills. Finding the right house was difficult. We needed a house with only one story and hardwood floors to allow Ross to continue to move through the house in his wheelchair and walk with assistance. It seemed that most of the houses had many stairs or were above our budget. We also needed space to set up his small physical therapy area, so he could continue to go forward in his physical therapy.
“We found a house that we liked. There were many buyers competing for the house. Our daughter, Ariel, wrote a letter to the sellers about our family and why we wanted to purchase their home. Based on her letter, we were elated to be chosen!
“We started the long search for a contractor who could oversee the modifications that Ross would need. This meant widening the hallway and doorways, modifying Ross’s bathroom and shower, and adding a little space to his bedroom. The house modifications have taken about half a year because there were many fire victims competing for skilled labor and materials. We hope to be finished in December and to move in before Christmas. We are relieved and grateful that this particular odyssey is coming to an end, as we are well aware that many fire victims are not so fortunate.
“We are so very grateful to our daughter Ariel Russell, who has been amazing in assisting us through this chaotic dislocation. She fulfilled a crucial role while we were in post fire shock. She interfaced for us with insurance companies and county, state, and federal authorities, each essential to financial and physical restoration. We don’t know how we could have survived without her stepping in and supporting us.
“Ross is a happy man! Jeremiah, Ross’s caregiver for many years, is back. He has agreed to do physical therapy with Ross twice a week. We purchased a new floor therapy mat and Ross is rolling on the floor, beginning to use his left side, a big step. Jeremiah also saw Ross holding the Grabber “P” in his left hand, something that Ross had previously been unable to do.
“We were finally able to replace Ross’s table easel. We put it on the kitchen table, put paper on it, and gave Ross a pen. Ross quickly put something on the paper that looked like scribble, but he had written his name in cursive, writing his first name and then his last name on top. He also likes to use the easel to work his foam alphabet puzzles, a decision of his own. Ross enjoys TV dramas, especially the pretty ladies whom he indicates by pointing and grinning.”
Betsy and Rusty
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~I can't imagine how difficult this year has been for all the Dillons. Losing everything to the fire and having to relocate numerous times, the stress of finding a home...my admiration for this family knows no bounds. Your comments and responses regarding Ross's difficult journey mean much to them, and I thank you for keeping in touch and asking for updates. Knowing you care is so important. Thank you.
The following is courtesy of Ariel Russell from the You Caring site:
In the early morning of October 9th, Rusty and Betsy Dillon awoke to the smell of smoke and looked down from their home on Trinity Rd in Glen Ellen and saw flames rapidly coming up the hill. They loaded Ross in the van as quickly as possible and fled over the mountain to Oakville where they sought refuge at their church. They would later come to find out from neighbors, that their beloved family home of nearly 20 years was lost to the fire as well as everything in it.
As most of you know, the Dillon's home was not just the place where they lived, where their kids grew up, where holidays were hosted, and where they kept generations of family heirlooms. Most importantly, it had been built into the ideal at-home living situation for Ross, who was permanently disabled in 2001 when he was hit by a car in Occidental while riding his bike.
Over the last fifteen years, the Dillons have accumulated an extraordinary amount of medical and physical therapy equipment (mostly donated) and modified the home to make it wheelchair accessible and feasible for Ross to move around as independently as possible. With the help of full time caregivers, they have given Ross the best home possible where he has continued to make medical progress that everyone said was impossible. Through all of this, Rusty and Betsy were able to maintain a semblance of a normal life- Rusty keeping his psychotherapy practice and role as priest at his church and Betsy assuming the role of full time caregiver and brain injury rehab specialist. The last fifteen years have been survivable, but devastating financially for the Dillons, with their only solace being their beloved home.
Now their home is gone and everything in it. They also lost Rusty's and Ross' caregiver's personal cars. Jeff and Ariel Russell also lost many of their farm supplies and belongings that had been stored at the Dillon home.
Now the Dillon family is faced with starting over completely, for themselves and Ross. In the short term, we will face finding housing and replacing daily essentials (clothes, shoes, toiletries, medical supplies, etc). In the long term, we will face difficult decisions about whether to rebuild or not and how to afford that.
Rusty and Betsy are angels who have generously given everything they have to care for Ross. Please join me in supporting them in any way you can, to ease the burden of this loss. They survived the last tragedy because of their supportive community and they will certainly need to lean heavily on their community again to make it through this disaster.
Help can come in the form of donations, offers of wheelchair accessible housing, medical equipment (hospital bed, adult diapers, shower chair, etc), and words of encouragement.
For more information on my family's journey caring for Ross, visit www.Rossdillon.com
Ross with Jeremiah, his longtime caregiver who was visiting
A note from Betsy Dillon, Ross's mom...
June 3 is the fifteenth anniversary of Ross's terrible injuries when he was hit by a car. He continues to make wonderful progress. His walking is better, although he needs much assistance from his caregivers. He continues to make wonderful constructions with Legos. His skill with puzzles is remarkable. He is able to put puzzles together by both the colors and shapes.
The biggest improvement is his ability to understand what we say to him. A recent example happened a few weeks ago when it was very warm. Ross was wearing a long
sleeved shirt. I said, "Ross, you look hot. Do you want to change into a short sleeve shirt?" He immediately leaned forward and held his arms up to help me remove his shirt.
Recently, we went to see the neurologist. Ross sat next to her, quietly listening to our conversation. I remembered how agitated he had been at our first meeting five years ago.
We had a recent visit from Jeremiah, one of Ross's first caregivers who was with us for about twelve years until he moved. Ross clearly remembered Jeremiah and listened intently to his friend.
Ross likes to play kickball with me while seated in his chair. He uses only his right foot and his eye-foot coordination is better than mine. We have a good time.
We are so blessed to have Ross at home where we are able to fit his care to his needs. Thank you for your love and prayers.
Ross's Proud Mother
This photo was taken right after Betsy and Rusty brought Ross home from the hospital. Betsy just sent the following update:
"This is the day the Lord has made and I will be glad and rejoice in it."
Today is the anniversary of the injury that changed Ross's life and that of those who love him. Ross's injury was awful, and the prognosis was grim with no hope of recovery.
Now, fourteen years later, we have a longer view. Ross was terribly injured. We do not expect that he will have full recovery. What we do know is that the Ross we know and love is still with us.
Ross is a happy man. He laughs at jokes. He still is impish, appearing to frown when I am being a clown trying to get a smile. Ross will hold the frown, suddenly a smile appears, and laughter unfolds.
Ross loves to watch the Tour de France or the Warriors playing. He reads short articles in the newspaper, magazines, or letters. He loves food and feeds himself. One day when Ross was asking for food, he said, "I want food, I love food, I am going to marry food."
Ross's walking is progressing with more stability. He also moves around the house in his wheel chair by using his feet. He still peddles the stationary bike by sitting behind (recumbent position) in his wheelchair.
week because he had developed pneumonia. The doctor wanted to give him IV antibiotics and after three days and nights we came home. Being in the hospital is hard because everything is different and sometimes confusing. It is definitely not home. Some of the staff remembered Ross from 2002; his records were in the system. His progress
was a surprise for most everyone. Ross was given physical therapy two days and they watched him walk with a walker (not far since he was tired and sick). He even sang to the ladies who helped him. That we could not understand all of the words didn't matter. We know he liked them!
Have the last 14 years been difficult? Yes! Are we happy to have Ross with us? Yes! Are we proud of his fortitude, and his enthusiasm to tackle challenges? Yes!
Thank you everyone for your love, prayers, and support.
Onward and upward!
Ross was hit by an inattentive driver fourteen years ago today. He still fights against terrible odds to live some semblance of the life he lost, but it's never easy. I heard from his mother just last night that he's been in the hospital with pneumonia. I believe he's back home now, and Betsy has said she'll be sending an update.
Betsy just sent me the link for the video below. It's been a long, hard struggle, but Ross continues to gain ground, quite literally one step at a time.
From Ross's mom, Betsy:
I am happy to be able to tell you that Ross is still making progress. He is communicating with gestures and words. When he wants his shoes or off, he will point to his feet, and maybe say "feet." Sometimes, if he isn't wearing shoes, he wants them on so he can walk, or if he is wearing shoes, he wants to have them off and a foot massage. When I ask him the right question, for example, do you want your shoes off, he says, "Yes, yes."
Another new skill, is that he is able to pull a blanket up over him, or off of his body when in bed. He also will move his pillow. Most of this is accomplished with his right hand. The left is becoming looser (not in a tight fist) and he continues to do his own therapy by holding his left hand with the right hand.
He frequently puts his right hand on his heart to show affection. I recently showed him the Christmas picture of him and Marley, his niece. He put his hand over his heart to show me how much he liked it.
He still has that delightful sense of humor. Recently, he said, "I want food, I love food, I want to marry food." Then he laughed. He also will tell us to "Close the door" after gesturing that we leave his room while he was watching television.
He is drinking with a straw again. This is very therapeutic, and it also slows down his efforts to drink the whole glass of water at once. We were using a straw for a while, but he refused it. I think this is another example of something I have been thinking about. There often seems a right time in his recovery to work on a particular skill. Rusty and I have been noticing that there seems to be a continuum in the emergence of calmness and progress.
Ross's biggest improvement continues to be walking with the walker. He is taking larger steps forward, and precise steps backward when he is ready to sit down in his chair. When he is coming up the ramp from outside, he lifts his feet across the threshold. His movements are very fluid.
We recently purchased a special foam mattress topper. We were surprised that he started sleeping through the night, and waking up in a happy mood. I have realized that when he was sometimes telling me in the morning, "I don't have a back," he was telling me he was in pain.
We are so blessed. Thank you all for your love and support. Also, thank you who have written, and are traveling a similar path with a loved one. You are in our thoughts and prayers.
Onward and upward!
I think the video says everything--filmed by Ross's dad, Rusty Dillon--
June 3, 2002 was when our lives dramatically changed. Our precious son was on life support, and no one gave us hope for him. I trolled the internet for some reassurance that would give us hope. I found no happy-ever-after stories for devastating brain injuries. There was one writer who helped me put it in some perspective. This woman had a special needs child and she wrote about coping with her disappointment that her life had changed. She said that it was like having spent time planning a move to Italy, and anticipating the joys of that move. However, the plane landed in Iceland and everything was different than she had planned; she had to live in Iceland. That analogy has stayed with me, and it has helped us to put one foot in front of the other and do what needs to be done.
Our lives are now focused on doing what needs to be done for Ross and our family. It has not been easy; there is never enough time to do everything. Our son is happy, he continues to regain motor and cognitive skills. We sometimes think of what could have been, but most of the time we delight in his progress, in his humor and his loving kindness. Ross’s comprehension and communication are increasing. For example, this morning he wanted to lie flat in bed and roll to the right on his side. All of his instructions to me were verbal. At one point, he asked me, “What do you want from me?” I said that I wanted for him to feel better (his allergies are bothering him),and I wanted him to be happy. I also thanked him for working hard, and being enthusiastic about challenges. His response was a smile and a nod.
Thank you for your prayers, love, and support. We are truly blessed. We could not do it without you.
Betsy and Rusty Dillon