Wednesday, August 19, 2015
Prism Perspective: Preamble
In the story to come, I shall call myself Mari. It is not my real name, but will be my character name in the story. Somehow there is a comfort to distancing myself so I can tell the story from no singular perspective. A family story is really the richness of many persons' life journeys and perspectives. I begin to host this story, as I was Nick's primary caretaker in the last years before his death. It was something I formally committed to at about 21 years of age. My parents asked me and my husband to become Nick's caretaker in their elder years, as I had studied to be a special education teacher and my husband was Executive Director of the local ARC (Association for Retarded Citizens). Though this was posed as a choice for me, I could not even fathom any alternative. Of course, I would be there to support Nick in whatever he needed throughout life. That message had reached my heart many years before when I was born the younger sibling of a brother who life paralleled with mine in so many areas.
Prism Perspective, Chapter 3
His Quiet Presence
As a little boy, Nick was a pleasure to his siblings. Being so medically involved and not ambulating until age 4, Nick posed no threat to toy ownership, vying for dinner table food, or selecting leisure activities for the evening. When younger sister, Mari, began to walk at one year of age, older sister Diane found it intolerable that Nick could not do the same. She made it her singular objective in her time spent with Nick to practice his steps regularly long before the days of baby walkers. Through her persistent efforts, Nick did learn to ambulate. However, he much preferred sitting cross legged, with each leg completely circumventing his hips to provide stability in the vertical position.
Television was just gaining popularity in the late 1950s. Nick could position himself six inches from the TV set, which was the limit of his visual clarity, and revel in the newest TV shows including Bonanza, Leave it to Beaver, Perry Mason, Jack Benny, the Ed Sullivan Show, and Dennis the Menace. Once his dinner was swallowed, Nick would settle in his cross-legged position for a two hour stint, with no arguments about channel selection since choices were limited. Then it was bath time and bedtime so that Margaret could tuck the others into bed once Nick was settled for the evening.
Bedtime always started in the kneeling position doing choral recitations of nightly prayers. "Hail Mary full of grace," or "Our Father". It was a precious sight to behold, children of all ages in their comfy night clothes, kneeling side by side with Mom and Dad, enjoying this religious ritual. Once in bed, all three children were kissed good night while the three older girls finished their homework in the living room.
As a little boy, Nick was a pleasure to his siblings. Being so medically involved and not ambulating until age 4, Nick posed no threat to toy ownership, vying for dinner table food, or selecting leisure activities for the evening. When younger sister, Mari, began to walk at one year of age, older sister Diane found it intolerable that Nick could not do the same. She made it her singular objective in her time spent with Nick to practice his steps regularly long before the days of baby walkers. Through her persistent efforts, Nick did learn to ambulate. However, he much preferred sitting cross legged, with each leg completely circumventing his hips to provide stability in the vertical position.
Television was just gaining popularity in the late 1950s. Nick could position himself six inches from the TV set, which was the limit of his visual clarity, and revel in the newest TV shows including Bonanza, Leave it to Beaver, Perry Mason, Jack Benny, the Ed Sullivan Show, and Dennis the Menace. Once his dinner was swallowed, Nick would settle in his cross-legged position for a two hour stint, with no arguments about channel selection since choices were limited. Then it was bath time and bedtime so that Margaret could tuck the others into bed once Nick was settled for the evening.
Bedtime always started in the kneeling position doing choral recitations of nightly prayers. "Hail Mary full of grace," or "Our Father". It was a precious sight to behold, children of all ages in their comfy night clothes, kneeling side by side with Mom and Dad, enjoying this religious ritual. Once in bed, all three children were kissed good night while the three older girls finished their homework in the living room.
Thursday, August 13, 2015
The Prism Perspective Summer 2015
Today provided a wonderful leisure summer afternoon. As a teacher, days such as these are sparse and much revered. I noticed one of the boxes of memories I have stored for years and wondered if, at age 58, this was a good time to revisit these moments, this time knowing the outcome. By happenstance, the box I selected was my husband's first love notes during our college years.
What quickly becomes apparent is that our love was built on a foundation of spiritual faith. I didn't remember that clearly, but the letters remind me what a priority that was in selecting a soulmate. Our relationship was also based on a mutual interest in helping those differently abled. Bill and I met at a Thursday night recreation program for special needs adult and our first date was August 1975. We were both to begin our junior years in college in September.
On September 11, 1975, Bill writes, "I haven't really known you for all that long, but the love that I see you give to those less fortunate has overwhelmed me to a point of admiration. " Six days later he shares that "Saturday after the game some kids from the Pennsylvania ARC came over to visit. We had a great party. My fraternity is hosting an activity night for them on October 2. We are planning a magic show and a dance. I can't wait."
October 15, "Mari, we have both learned through working with special needs adults that love radiates from their hearts. To me this love is different than any I have ever known. I've done some pretty sentimental thinks in my life, though each and every time it's been while working with special needs children."
In January 1976, Bill wrote me that he had acquired a work study job at an alternative school connected with his university, Lehigh University and that he was thrilled to be assigned to a classroom, "possibly helping to teach." He did teach some content that year and it helped him earn credits toward his Lehigh degree.
Bill and I were not exclusively dating just each other at that point, so since we had both returned to our separate colleges, I wrote, "I loved the book you sent, Bill. It offered guidance on the last page. 'God speaks to us sometimes through our circumstances and guides us, closing doors as well as opening them. He will let you know what you must do, and what you must be.' I know that I can't make a decision right now as to who is best for me. Someday the Lord will make that decision for me. I've been praying that the Lord will lead me to the spouse that He has picked for me. It's been a long road so far--enjoyable but sprinkled with heartaches.
'Deliver us, O Lord, from the foolishness of impatience. Let us knot be in such a hurry as to run on without Thee. We know that it takes a lifetime to make a tree; we know that fruit does not ripen in an afternoon and Thou Thyself didst take a week to make the universe..... Slow us down, O Lord, that we may take time to think, time to pray, and time to find out Thy will. Then give us the sense and the courage to do it."
I made the right decision. On June 24, 1978, I married my soulmate, though it took many years to know that for sure. Clearly, God chose for me someone that helped me carry the burdens of raising a special needs sibling. That path evolved slowly, just as a path through the woods has many forks where choices can be made. It began in 1984, two years after the birth of our first children, twin boys. My parents knew we would appreciate more space than our townhome for raising children and offered that we could build in the empty lot they owned beside their home if in turn we agreed to assume responsibility for raising Nick if they became unable to do so at any time. It seemed like a no-brainer to Bill and I in terms of making that decision. We were going to be there for Nick no matter what that entailed, so getting a larger home in the bargain was a delightful bonus.
For 10 years we raised our family of 3 children side by side with my parents. We shared many daily tasks together, including yard work and driving to appointments. Then in June 1993, my father, Nicolas Dugan, passed away of a heart attack. That fork in the path had a clearly marked arrow sign and we did not hesitate to follow its lead.
What quickly becomes apparent is that our love was built on a foundation of spiritual faith. I didn't remember that clearly, but the letters remind me what a priority that was in selecting a soulmate. Our relationship was also based on a mutual interest in helping those differently abled. Bill and I met at a Thursday night recreation program for special needs adult and our first date was August 1975. We were both to begin our junior years in college in September.
On September 11, 1975, Bill writes, "I haven't really known you for all that long, but the love that I see you give to those less fortunate has overwhelmed me to a point of admiration. " Six days later he shares that "Saturday after the game some kids from the Pennsylvania ARC came over to visit. We had a great party. My fraternity is hosting an activity night for them on October 2. We are planning a magic show and a dance. I can't wait."
October 15, "Mari, we have both learned through working with special needs adults that love radiates from their hearts. To me this love is different than any I have ever known. I've done some pretty sentimental thinks in my life, though each and every time it's been while working with special needs children."
In January 1976, Bill wrote me that he had acquired a work study job at an alternative school connected with his university, Lehigh University and that he was thrilled to be assigned to a classroom, "possibly helping to teach." He did teach some content that year and it helped him earn credits toward his Lehigh degree.
Bill and I were not exclusively dating just each other at that point, so since we had both returned to our separate colleges, I wrote, "I loved the book you sent, Bill. It offered guidance on the last page. 'God speaks to us sometimes through our circumstances and guides us, closing doors as well as opening them. He will let you know what you must do, and what you must be.' I know that I can't make a decision right now as to who is best for me. Someday the Lord will make that decision for me. I've been praying that the Lord will lead me to the spouse that He has picked for me. It's been a long road so far--enjoyable but sprinkled with heartaches.
'Deliver us, O Lord, from the foolishness of impatience. Let us knot be in such a hurry as to run on without Thee. We know that it takes a lifetime to make a tree; we know that fruit does not ripen in an afternoon and Thou Thyself didst take a week to make the universe..... Slow us down, O Lord, that we may take time to think, time to pray, and time to find out Thy will. Then give us the sense and the courage to do it."
I made the right decision. On June 24, 1978, I married my soulmate, though it took many years to know that for sure. Clearly, God chose for me someone that helped me carry the burdens of raising a special needs sibling. That path evolved slowly, just as a path through the woods has many forks where choices can be made. It began in 1984, two years after the birth of our first children, twin boys. My parents knew we would appreciate more space than our townhome for raising children and offered that we could build in the empty lot they owned beside their home if in turn we agreed to assume responsibility for raising Nick if they became unable to do so at any time. It seemed like a no-brainer to Bill and I in terms of making that decision. We were going to be there for Nick no matter what that entailed, so getting a larger home in the bargain was a delightful bonus.
For 10 years we raised our family of 3 children side by side with my parents. We shared many daily tasks together, including yard work and driving to appointments. Then in June 1993, my father, Nicolas Dugan, passed away of a heart attack. That fork in the path had a clearly marked arrow sign and we did not hesitate to follow its lead.
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