Tag Archives: Guest Blogger

A Mother’s Thoughts From The Road

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My parents love coming out to Kansas City to visit me. They get a small, much deserved vacation, they get to shop at all of the quaint, artisan shops in downtown Lawrence that they enjoy, and of course they get to see their oldest son. The three of us always have a great time together, them catching me up on their lives and other family news from back home, and me filling them in on my latest Roll Models ideas, kitchen adventures, and all of the other crazy experiences that make up my life. I usually cook something special for them one day, and they treat me to one of my favorite restaurants another. These long weekend trips are pretty much perfect, that is until their stay is over and they have to travel home.

Scott Drotar Goodbyes
My parents always struggle with saying their goodbyes at the end their visits.

Everything is always going well until it comes time for them to head back to Indiana and for us to say our goodbyes. My father, who is a man of few words, typically leaves me with some wisdom, a handshake, and then quickly walks away, but even without his rapid departure to avoid any possible waterworks, I can always see in his face that it is hard for him to say farewell. My mother is much more emotional, and is often fighting back tears before we even make eye contact. She feels very melancholy and almost guilty, that she is “abandoning” her physically disabled son, who she cared for every day for 18 years, and leaving him over 600 miles from his family. It is always a difficult goodbye with tears and a long hug. She gives me a kiss, says “I love you,” and slowly walks out my front door. It is always hard for me to watch my parents, who I love so much and owe so much to, leave me in such a depressing, heavy-hearted state.

Even though I could always understand on some level why it is so heart-wrenchingly difficult for my parents to say farewell, it was always something that I could never fully wrap my head around. I could grasp the concept of leaving one of their children, especially a disabled one, so far from family. This made sense to me, but what I struggled to understand was why it was not nearly so emotional and difficult for them to say goodbye to my siblings, who were in very similar situations. This last Thanksgiving though, my mom did something that helped me greatly in fully comprehending her tear-filled farewells. After having hosted a wonderful, food and football filled weekend with my parents and brother, I got on my tablet to respond to all of the emails and such that I had ignored over the last three days. By the time I had sifted through the myriad of emails that had accumulated and replied to the handful that were important, I saw that my mother had sent me an email while they were driving home. Her thoughts from the road, which I have included below, are very emotional for me to read, but they are also enlightening in that they give you a glimpse into her thoughts and feelings about my disability and our relationship. I hope you get as much from her sincere and honest depiction of her feelings as I did. If nothing else, please take her closing words to heart, as she succinctly and effectively gives you the formula for a happy life.

(My mother’s words are in italics)

Scott Drotar Primary Caregiver
My mom was my primary caregiver for the first 18 years of my life, which created a strong connection between us.

Traveling on Thanksgiving to be with family is as much a part of the holiday’s framework as is the turkey and pumpkin pie. Our family, over the years, has been lucky that the travels haven’t been very far. When Scott and Ryan went out to Kansas we decided to celebrate Thanksgiving there and our travels became longer and Thanksgiving more intimate with only our immediate family.

The first few years it was an adventure to Lawrence, Kansas, where Scott was in graduate school and Ryan attended undergrad for a year to assist Scott in his move to becoming independent and getting established in Kansas. Dan, Stephanie and I would travel Wednesday afternoon and evening to arrive on “Turkey Day.” We would go out for Thanksgiving brunch at a hotel in downtown Lawrence and then back to Scott’s for football and snacks. We would stay on Friday and wander through the wonderful downtown shops of Lawrence, Kansas, to begin our Christmas shopping.

A few years ago Ryan was back in Indiana at Indiana University, and Stephanie was working and going to school in New York City. Steph could not travel that year, so Dan and I picked Ryan up at IU and headed to Kansas for Thanksgiving. Our plan was to cook our Thanksgiving dinner at Scott’s apartment that year. Dinner went well, but Scott got quiet after eating and wanted to lie down. His temperature rose, he became nauseous, and in the blink of an eye we were heading to the hospital.

We ended up with Scott being admitted to the hospital. He was dehydrated, feverish, nauseous, achy, and had a headache. Doctors didn’t know where the infection was coming from, but it was there and didn’t want to go away. So IV fluids and antibiotics were given with adjustments being made every 8 to 12 hours and still no sign of progress. Ryan, Dan and I took turns staying with him. Hospital staff can deal with illness, but the intricacies of SMA, and all that goes with it, are beyond their immediate scope of care, so family cares for Scott while nurses, doctors, and medical tech deal with the immediate threat.We were there several days. Ryan and Dan were told not to leave to go back to Indiana, and Steph was on stand-by to travel to us. It was touch and go.

Scott Drotar Maternal Instincts
My mom’s maternal instincts make it hard for her to leave her disabled child 600 miles away from family.

Hours in a hospital are very long, with too much time to think, pray, plead, worry, and feel helpless. A couple more days pass and miraculously Scott’s body began to win against the infection. Dan and Ryan return to work and school, while I stay behind until Scott is released and home doing well. I send lesson plans by mail and phone (I was a choral director with concerts and community performances looming throughout December, but my colleagues and principals back in Indiana were wonderful, and everyone kept my work life going so I could be with my son).

I traveled home about 10 days after Thanksgiving by Amtrak, not wanting to leave my son but no longer needed. I had a husband and job to return to, but did not have any way to explain how emotionally numb I had become. Empty inside, but on the outside I smile, get through concerts and performances, watch my healthy students sing and dance and live their lives, all the while wishing my son could live a mostly carefree life also.

Scott is strong. He fights and puts on that same strong face for the world and teaches us all, every day, to make the most out of your life and deal with what you are given. I love and admire my son, and I am so thankful I have him to love and to teach me what is important.

Thanksgiving 2014 was at Scott’s this year again and although Steph couldn’t be with us, we had wonderful family time. We cooked, watched football, put up Scott’s tree, and watched Christmas movies. Normal and good…but deep in my heart I still fear the illness and how quickly it can change our lives.

Love and treasure family and friends, spend time laughing and talking, appreciating each small moment.

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Guest Blogger: Yamil Colon

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Scott Drotar Yamil
Yamil is one of my closest friends and lived with me for two years during our days at Notre Dame.

Today’s article is a special, guest post written by a very dear friend of mine, Yamil Colon. Yamil was in my first college class at the University of Notre Dame, and eventually he became one of the best friends I have ever had, as well as being my roommate for two years. We could not have come from more different backgrounds, him being a salsa dancing, Spanish speaking Puerto Rican and me being a physically disabled, small town Midwestern guy, but despite all of our differences we were drawn to each other due to a mindset we both shared. This common mentality that drew us together was our fearless determination to succeed no matter what obstacles life put in our way. Both of us were facing a lot of challenges that had to be overcome in order for us to survive at Notre Dame. He had to learn to live in an entirely new culture using his second language, and I had to learn to live independently as a disabled person in an able-bodied world. Thanks to our courage, perseverance, and refusal to give up, not only were we able to make it through the uphill battle we both faced and enjoy college life, but we also forged a friendship that lasts to this day.

Having been one of my closest friends my entire adult life, Yamil has gotten to know me better than almost anyone. On top of that, by living with me for two years he also got to see how my disability impacts, and often complicates, my daily life. This combination of our close relationship along with his understanding of the obstacles presented by my physical limitations gives Yamil a unique perspective on my world, which he shares with you in his article. He talks about how we met, some of the great times and adventures we had, and most importantly how our friendship helped us both survive our college days and grow into the men we are today. (Guest blogger’s words in italics)

The first time I saw Scott was during Freshman Orientation at Notre Dame, as he was entering the dorm building along with his nurse. I recall thinking “Well, that’s different… I wonder if we’ll become friends.” I also wondered whether or not we would have a chance to interact, seeing as Notre Dame is a pretty big place. To my surprise, Scott would be present at my History Seminar class that first semester. That gave us the opportunity to chat and to get to know each other. We quickly became very good friends and decided to room together the next year. Those years we lived together are responsible for some of the fondest memories I have of my college experience.

I am very thankful for those years. It gave me a broader perspective on what it means to face and overcome adversity at levels I did not think existed. To give you some perspective, the most difficulty I had ever faced was coming to Notre Dame. I am originally from Puerto Rico, where we speak Spanish and our culture is markedly different. So, I was dealing with culture shock, adapting to a new language, and a completely different way of doing things. I had to deal with all of this on top of the normal college-related difficulties (courses, social activities, etc.), but all of the difficulties I faced were nothing compared to what Scott has to deal with on a daily basis.

I slowly started understanding (but I never truly will) what his daily routine and his ‘normal’ life entailed. I started asking “stupid” questions like: “What is that thing on your neck?” ,“How do you go to the bathroom?”, and “What happened to you?” To his credit he answered all of my questions without any hint of judgment, a lot of patience, and a sense of wanting to educate me. That is something that I am eternally grateful for.

Something I learned from Scott is that when faced with adversity you have two options: wilt down and give up, or stare at it defiantly and dare it to bring you down. With Scott it was always the latter and never the former. This turned into a crazy competitiveness that just oozed out of him. Whether it was through coaching our intramural dorm football team, through video games where he routinely kicked my ass at Halo, NCAA Football, and FIFA, or through normal course work, he always found a way to come out on top. I remember that when we struggled in our courses or we expressed feelings of defeat we would tell each other “You need to do better.” And that’s how we pushed each other to do better in our classes, and I attribute part of our academic and social success to that competitive attitude.

Not everything we did was that intense though. We certainly had our moments of great fun. I think anyone that gets to know Scott will recognize his great sense of humor. One of my favorite memories was during a Notre Dame home football game. I recall it was against the University of Michigan because I kept hearing the dreaded ‘Go Blue!’ chant everywhere we went. I believe it was early September. It was really nice outside and we had decided to tailgate before we went to the game. However, Scott had to go to the restroom before we could go into the stadium. This meant we had to go back to our dorm room, walking through the waves of fans that were headed in the opposite direction. I looked at Scott and asked “How are we going to do this?” He looked at me with a smirk: “I’ll be like Moses and part the seas.” At this point he proceeded to accelerate his chair right through the middle of all the fans and sure enough, the seas parted. As he rolled through the masses, people politely opened up the way to let him through. I struggled to not laugh. But then, a huge contingency of Michigan fans was headed our way. Scott did not blink and kept moving forward. Once we were near the end of Michigan fans Scott yelled “Go Blue…” The Michigan fans yelled in approval only to be dismayed when they heard Scott then yell “and GOLD!” At that point even the Michigan fans could not help but laugh.

Scott Drotar Rebelde
The gang from the Latin American television show, Rebelde, became a common sight in our dorm room, especially the red-headed beauty, Dulce Maria.

We certainly had a lot of fun those days and Scott never ceased to surprise me. I remember one time I returned to the room early from class and Scott was watching TV. It took a good 10 minutes before I realized that Scott was watching Univision. Not only was he watching the Spanish channel on TV, but he was watching a soap opera. To make matters even worse, he was watching ‘Rebelde’ (rebel), the top soap opera of choice for 10-16 year old boys and girls in Latin America. I asked Scott whether or not he even understood the plot. He said he did not but that it did not matter because he made up his own plot in his head. The music and the actors’ expressions helped the plot along. Surprisingly, his plot wasn’t that far from the actual plot in the soap opera. Shortly after that day, Rebelde posters appeared in our room and his desktop now had a picture of Dulce María, his favorite character from the soap opera. Rebelde was also a pop-rock group. So, Rebelde songs started playing in our room and became Scott’s ringtone. That was an interesting phase for Scott that lasted quite a while and provided quite the humor and entertainment in our room.

I hope that these recollections give you a small glimpse at what our life was like back at our alma mater. I admire Scott’s strength and perseverance through everything he has been through. When he approached me with the idea to provide a guest post for his blog I jumped at the opportunity. After all he has done for me this is the least I could do to help in his mission to help others. The lessons I learned with him and because of him I still carry with me and when things start to get hectic and difficult I simply think “You need to do better”, re-focus, and get back to work. It’s that no-quit, no-excuses, borderline defiant attitude towards life Scott possesses that makes him such an extraordinary human being. Imagine if you had that same kind of resolve, all the things you could accomplish in your own life.

Scott Drotar Golden Dome
My friendship with Yamil is a large part of what made my days under the “Golden Dome” some of the best of my life.

When I first read Yamil’s memories of our time together, I was very touched. I often feel like all of the relationships in my life, especially the close ones, are lopsided in my favor. Since I need assistance doing pretty much everything, my friends, who are happy to help, end up doing quite a bit for me, and since I cannot do the same for them, I feel like they are putting a lot into our relationship but not getting much out. When I read something like this post however, I am reminded that, even though you cannot see it, I do bring a lot to the relationships in my life. By living my life the “right” way and letting others see me fight to achieve my dreams despite the obstacles I face, I can inspire and motivate them to accomplish the great things they are capable of. Reading Yamil’s account of the good times we had helped me remember that our relationship was not him helping me, but us helping each other. By developing and contributing to our friendship each in our own way, we not only got to bring happiness to our own lives, but also each other’s.

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Roll Models Guest Blogger: Sandi Tiffany

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This article is the first in a new category of posts for www.scottdrotar.com. It is quite different from all of my previous posts in that it was not written by yours truly. Today I feature an article by a guest blogger, who is not only an amazing woman, but also a former nurse of mine, Sandi Tiffany. Not only is Sandi the author of today’s post, but she also catalyzed this entire idea of featuring articles written by people who know me well, in an effort to give you another point from which to view my world. It all started when Sandi was asked to write a piece for another publication about one of her experiences as a nurse, and she chose to write about her time taking care of me. Sandi sent me a copy of her work, and after being both touched and enlightened by her words, it became obvious to me that presenting other people’s perspectives of the things I go through would help you to better understand my life. Since she is the person who sparked this phenomenal idea, I feel it is only fitting that Sandi be the first blogger I feature. So, without further ado, I proudly present to you an article by the first Roll Models guest blogger, and one of the nicest people you will ever meet, Sandi Tiffany (words in italics are the work of the guest blogger).

Scott Drotar Sandi Tiffany
Sandi was my nurse for 8 years, 4 of which were while I was living in the dorms at Notre Dame.

I was born at Memorial Hospital, I went to school there, and I have been an employee in some capacity for 37 years. I first worked as a student nurse, then as a graduate nurse on an orthopedic/surgical unit, and then on the Pediatrics and Pediatrics Intensive Care Unit (PICU). For the last 16 years I have been working as a home care nurse as part of the registry team. This job has placed me in a variety of different homes. I have worked with clients of varying ages and health issues, some for a short time and some for years. Working four to twelve hours in other’s homes is not for everyone. It works the best when the values of the family are similar to those of the health care provider. I had this opportunity when I started working with Scott Drotar.

I met Scott in the PICU at Memorial Hospital. He was a freshman at John Glenn High School where his dad was a well respected government teacher and his mom a dynamite music instructor. He was in the hospital because he developed pneumonia so severe that it required an emergency intubation to manage his secretions. The first day I took care of Scott was a 12 hour shift and the day he received a permanent tracheostomy. A friend of the family who was a nurse practitioner on the Pediatric Oncology Unit encouraged me to take care of Scott. He was home several weeks before they began to look for someone to care for him on the day shift. The rest is history though, as I ended up being part of Scott’s life for the next eight years.

Initially, in the school setting, I was in the classroom with Scott. As he felt more comfortable I also acted as the school nurse, but Scott’s care remained my first priority. If he was sick, I was at home taking care of him, or if he needed to rest in the lounge I stayed with him. Sometimes he just needed a quick suction and his books switched before heading back to class. Eventually, his care consisted of four nurses who covered his hours. Scott persevered and graduated Valedictorian, receiving scholarships to help him attend the University of Notre Dame.

We had the opportunity to go with Scott to Notre Dame and provide him with 24 hour coverage during his four years of college. Our team grew to four men and five women that covered his care, including every other weekend, so he was able to enjoy the entire college experience. Wherever Scott went we were there, often in the background, because we also recognized that no college student wants anybody hovering.

Scott Drotar Memorial Nurses
Here I am with several of my nurses during college. These incredible individuals let me chase my dreams and live independently.

I believe I speak for all of the nurses in saying that we had some great experiences. I was able to see a drum line before a home game, a water polo match, attend a pep rally, go to a home football game, attend some great classes, and meet some interesting young people from all over the world. Personally, I was able to study while Scott studied, or while he was in class. This is when my passion for alternative therapies and nutrition took off. I completed three online master’s degree level courses through Tennessee State and participated in a pilot study for accreditation in Holistic nursing. I also learned to view Scott as a whole person not as “handicapped.” It also made me more empathetic to the challenges immobility poses for those who are dependent on others.

All good things come to an end. Scott graduated from Notre Dame and went out to Kansas to complete his Master’s in Quantitative Psychology. He now has another set of nurses who care for him. In his blog, www.scottdrotar.com, he very eloquently shares his trials and tribulations. His blog allows us to get inside his head, to understand better what it is like to be on the receiving end of our care and perhaps fine tune it where needed. I strongly encourage all to take the time to check it out. Home care is not for everyone, finding a good fit is important. I am certain that collaboratively our group of nurses made a difference in the life of this child and his family. It gave them the ability to live their lives to the fullest.

I was honored when Sandi first asked if she could write about me, but after reading her recollection of our time together and what she took away from it, I was moved beyond words. It makes me feel so happy to know that she enjoyed working with me, and that I was able to touch her life just like she touched mine. It makes me feel even better that she thinks other health care professionals could benefit from learning about my life through my blog. Sometimes it is hard for me to remember that just because my nurses are taking care of me, that does not mean that I am the only one who is affected by our relationship. It just goes to show that you are affected by everyone you interact with throughout your life, and you never know which people are going to make a profound, positive impact on you (or that you will make an impact on). The last two sentences in Sandi’s article sums it up nicely. She, and all of the nurses that have cared for me, greatly improved the lives of me and my family, and her terrific care and endless compassion allowed us to live happy, successful, and fulfilling lives. And now, thanks to her article, I too can say how I am certain that, in some small way, I added some happiness to her life as well.

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