Community Nutrition Student Q&A

Each semester, Lori's Hands serves as a field placement site for a group of UD students enrolled in a Community Nutrition course. This week on the blog, student Alexa interviews student Kim regarding her Lori’s Hands experience.

Alexa: Tell us about the client you're visiting this semester, and the support you provide.
Kim: We help Dave, who has ataxia. We prepare and cook his dinner for him and provide companionship 1 night per week.

Alexa: What do you enjoy about the experience?
Kim: When we are on our visits, I enjoy learning about Dave’s ataxia. He has provided several resources for us about his disease, and we've even been reading a book he wrote himself about his experiences!

Alexa: What is the biggest thing you have learned from your Lori’s Hands experience?
Kim: I have learned that despite having a disability you can live a very happy and productive life. Dave proves that positivity and persistence is key to pushing through your limits. He swims a mile almost every day of the week and is always happy and productive when we visit him. He writes his own stories and keeps a positive attitude.

Alexa: Why did you volunteer through Lori’s Hands?
Kim: I am in a community nutrition class that requires volunteer hours related to nutrition. Working with Dave through Lori’s Hands was a way for us to learn more about cooking with a disability, while helping Dave to prepare his meals. Although I was required to volunteer through a class, I wish I had learned about Lori’s Hands sooner during my undergraduate career at UD so that I could have experienced more volunteer hours for their nonprofit.

Alexa: What do you wish you could change about the experience?
Kim: I wish I could volunteer more often and that I learned of Lori’s Hands earlier. We only visit with Dave once a week. I wish I could also volunteer with several clients to learn more about other chronic illnesses and broaden my education beyond nutrition.

Q&A With LH Intern, Chelsea

This semester, UD Senior Chelsea Adebiyi has been completing a 360-hour field placement with Lori's Hands. We sat down to talk with her about her experiences working with our clients. 

LH: Tell me about yourself
CA: My name is Chelsea Adebiyi, and I am a senior Health Behavior Science major; I also have a minor in Public Health. After graduation, I want to become a Pediatrician because I love working with kids and with people in general. 

LH: Why did you get involved with Lori’s Hands? 
CA: I heard about Lori's Hands my freshman year. It intrigued me but I got involved with other activities and so didn't become a volunteer right away. As I was planning for my senior year internship, I thought of Lori’s Hands as a great opportunity because I love what Lori's Hands does. I love that what we do puts a smile on clients’ faces. It’s awesome how clients talk about Lori's Hands. I don’t think we always realize the impact that we have on clients until we have the chance to talk with clients one on one. I look forward to my regular client visits.

LH: Speaking of your visits, what do you do with Lori’s Hands? 
CA: I have several different clients whom I visit on a regular basis. One client is blind; she has aides who help her, but she lacks social support. She is 91 years old, and we visit with her and she talks with us about her life. We have conversations about when she was a child. I love it because she tells us about Presidents from throughout her lifetime – things that I have only read about in history books. She also tells us about the reality of aging and how difficult it can be. I love that we get to be there for her and try to make things more comfortable for her. She lives by herself and doesn’t have family close by, so I know that visits from Lori's Hands volunteers mean a lot to her and provide her with social support she's otherwise lacking. 

I also have a client who has MS. She has some difficulties with mobility, but she’s very mentally sharp. Sometimes she asks us to help organize things for her, and other times we play games and sit and talk with her. Another client I visit likes everything to be neat and organized, so this is how I help her when I visit.

My last client I visit every Friday, and I always look forward to seeing her. She’s so vibrant and happy about life – she largely attributes this to Lori’s Hands because we were here for her when her husband passed away and she became sick. When she didn't have many people to turn to, she could rely on Lori's Hands for support. 

LH: It sounds like you help Lori's Hands clients in a lot of different ways and have done some very meaningful work. So tell me more about why you care about Lori’s Hands mission. 
CA: Now that I’ve visited clients, I see so much more of the impact Lori's Hands has, and the work has become much more important to me. I see how what we do makes a real difference in clients’ lives.

This year, I visited a client on the anniversary of her husband’s passing. It was meaningful to provide her company on a day that could have been very difficult. We ate brownies and shared stories. I was glad to be able to support her and give her something to look forward to despite it being a difficult day.
— Chelsea Adebiyi

LH: You have worked with clients facing a variety of health challenges. What has this taught you about living with a chronic illness? 
CA: I’ve learned that it’s hard but it is more manageable when you have people around who care about you; it helps you not to focus on what’s wrong. You can still have a vibrancy in your life. I have also learned about new ways of adapting to and interacting with people. For example, if someone has limited hearing, I’ve learned how to speak with them so that they can understand me. I have learned that little things can be significant for a client; for example, I always make sure that there are no tripping hazards for my client who is blind, and if I put something in the refrigerator, I need to tell her where it is in the refrigerator. I have learned how to be more personable and relatable; I have learned a lot about empathy.

LH: I imagine those are skills that will be really important as you step into the medical profession. What do you think in particular you’ll carry with you from your Lori's Hands volunteer experience? 
CA: I wish I could still volunteer with Lori’s Hands after I graduate. You can’t outgrow Lori’s Hands. If I was going to still live in Delaware, I would still volunteer. Something I will take with me is all of the experiences I have had with clients. The volunteer work I have done has been important; I originally thought I would just be helping people with activities they had difficulty completing themselves, but my experience has been much more significant than that. I have made lasting relationships with the clients, far beyond the volunteer work that I do.

I didn’t realized that there is this population in Delaware who just needs social support, someone to talk to. In the future, I will be more aware of my surroundings and the needs of others.
— Chelsea Adebiyi
Marina and Chelsea take a moment during a visit to snap a selfie with a client. 

Marina and Chelsea take a moment during a visit to snap a selfie with a client. 

Wheelchair-Friendly Recipes

Many of our Lori's Hands clients use a motorized wheelchair for most or all of the day. The inaccessible layout of many houses and apartments can create challenges for people wanting to cook from their wheelchairs. High counters, deep ovens and cabinets, and other issues can make cooking more frustrating than fun.

Below is a collection of delicious and nutrient-packed recipes that can all be prepared using a toaster oven or another small kitchen appliance. Prepare the ingredients as shown in each recipe using a table or countertop at wheelchair level. Many of the ingredients are healthy and most are familiar items you can easily find at any grocery store. Of course, if you have dietary restrictions or follow a special diet, be sure to consult with a dietitian or another healthcare provider prior to launching a new cooking routine. 

We've also made an effort to include recipes for smaller portions. Many of our clients (and our college students) are unable to use typical recipes that produce serving sizes of 8-10. If you live alone or with one other person, these recipes may help you cut down on food waste or the need to eat leftovers all week long! 

Do you have a go-to wheelchair-friendly recipe? We'd love to hear it! Send us an email (contact@lorishands.org) and share your mouth-watering favorites! Happy cooking!
 

Recipe: Toaster Oven Greek Frittata

Source: Cooking Light
Serves: 4

Ingredients

  • 3 tablespoons olive oil
  • 10 large eggs
  • 2 teaspoons kosher salt
  • 1/2 teaspoon black pepper
  • 1 5-ounce bag baby spinach
  • 1 pint grape tomatoes, halved
  • 4 scallions (white and green parts), thinly sliced
  • 8 ounces Feta, crumbled

Preparation

  1. Heat toaster oven to 350° F. 
  2. Add the oil to a 2-quart casserole and transfer to oven for 5 minutes. 
  3. Meanwhile, in a bowl, whisk together the eggs, salt, and pepper. Add the spinach, tomatoes, and scallions and combine. Gently stir in the Feta. 
  4. Remove casserole from oven. Pour the egg mixture into casserole. Bake until the frittata is browned around the edges and slightly puffed and a knife comes out clean, 25 to 30 minutes. 

Recipe: Toaster Oven Blueberry Cornbread Muffins

Source: Finding Radiance
Serves: 6 medium-sized muffins

Ingredients:

  • 1/2 cup buttermilk
  • 1 large egg
  • 2 tablespoons of sugar
  • 2 tablespoons of unsweetened applesauce
  • 1/3 cup cornmeal
  • 2/3 cup of whole wheat flour
  • 2 tsp of baking powder
  • 1/4 tsp of salt
  • 1/2 tsp cinnamon
  • 1/2 cup of fresh blueberries

Preparation:

  1. Spray a 6-cup muffin tin with nonstick spray (or use cupcake liners). Preheat toaster oven to 350 F.
  2. In a medium size bowl, mix together the flour, cornmeal, baking powder, cinnamon, and salt. Set aside.
  3. In a small bowl, whisk together the buttermilk, egg, applesauce, and sugar.
  4. Add the wet ingredients all at once to the dry ingredients.
  5. Mix until just barely combined and then fold in the blueberries. It is really important not to over mix this.
  6. Divide up into 6 muffin cups.
  7. Bake for 20-25 minutes until a toothpick comes out clean.
  8. Let cool and enjoy!

Recipe: Toaster Oven Chicken Quesadillas

Source: Good Housekeeping
Serves: 4
Time: 35 minutes

Ingredients

  • 2 green onions
  • 2 c. shredded skinless rotisserie chicken meat
  • 1½ c. Shredded Monterey Jack cheese
  • 1 pickled jalapeño chile
  • ¼ c. fresh cilantro leaves
  • 4 burrito-size flour tortillas
  • ¾ c. salsa verde
  • ½ c. reduced-fat sour cream

Preparation:

  1. Preheat toaster oven to 425°F. Thinly slice green onions; reserve 2 tablespoons dark green tops for garnish.
  2. Evenly divide chicken, cheese, jalapeño, cilantro, and remaining green onion on one side of each tortilla; fold other half over.
  3. In single layer on foil-lined toaster oven tray (working in batches if necessary), toast quesadillas 8 to 10 minutes, or until tortillas are golden brown and cheese is melted.
  4. Cut each quesadilla in half. Serve with salsa verde, plus sour cream if you like; sprinkle with reserved green onions. 
     

Recipe: Toaster Oven Pizza

Pizza.png

Source: Carrots ‘n Cake
Serves: 1
Time: 25 min

Ingredients:

  • 1/2 cup almond flour/meal
  • 1 tbsp liquid egg whites
  • 1 tsp ground flaxseed meal
  • 1/2 tsp olive oil
  • 1 tsp garlic powder
  • pinch of salt

Preparation:

  1. Preheat toaster oven to 375 F.
  2. Combine all ingredients in a bowl; blend well.
  3. Roll batter into a ball.
  4. Coat cooking surface with a non-stick spray and then spread the batter into a round disk. Be sure to keep better intact (no holes).
  5. Top crust with your favorite toppings (cheese, sauce, veggies, meat, etc.)
  6. Bake for approximately 15-17 minutes until crust is cooked all the way through. Use a spatula to remove pizza. Eat and enjoy!
     

Recipe: Baked Sweet Potatoes

Source: Nom Nom Paleo
Serves: 1
Time: 45 min-1 hour

Ingredients

  • Sweet Potatoes (as many as you want)
  • Black pepper
  • Salt
  • Any other spices
  • 1 tsp (per sweet potato) oil of choice

Preparation:

  1. Preheat toaster oven to 400 F.
  2. Coat potato in 1 tsp of oil
  3. Sprinkle with salt/pepper/seasoning of choice.
  4. Pierce with a knife multiple times.
  5. Bake for 45 min-1 hour
  6. Let cool, open and enjoy!
     

Recipe: Single Peanut Butter Cookie

Source: Chocolate Covered Katie
Serves: 1-2 Cookies

Ingredients:

  • 2 tbsp flour
  • 1.5 tbsp peanut butter
  • 1/16 tsp baking soda
  • very scant 1/16 tsp salt
  • 1/4 tsp pure vanilla extract
  • 1.5 tbsp maple syrup (Or use 3/4 tbsp each sugar and brown sugar)
  • 1 tsp applesauce
  • optional: add some chocolate chips if you wish!

Preparation:

  1. Preheat toaster oven to 350 F
  2. Mix dry ingredients.
  3. Add pb and wet ingredients.
  4. Mix well and form into one or two cookies.
  5. Flatten into cookie shapes and bake for 8-10 minutes.
     

Recipe: Slow Cooker Pork Chops with Mushrooms and Carrots

Source: Cooking Light
Serves: 4 (1 pork chop; ½ cup noodle mixture)

Ingredients

  • 1 1/2 cups unsalted chicken stock
  • 1 1/2 teaspoons sherry vinegar
  • 3 tablespoons all-purpose flour
  • Cooking spray
  • 3/4 pound carrots, peeled and cut into 2-in. pieces
  • 1/2 pound shiitake mushrooms, stems removed and caps quartered
  • 1/2 cup chopped onion
  • 2 garlic cloves, minced
  • 4 thyme sprigs
  • 2 oregano sprigs
  • 1 tablespoon olive oil
  • 4 (6-oz.) bone-in center-cut pork chops
  • 3/4 teaspoon kosher salt, divided
  • 3/4 teaspoon black pepper, divided
  • 1/4 cup dry white wine
  • 6 ounces uncooked whole-wheat egg noodles
  • 2 tablespoons heavy cream
  • 2 teaspoons fresh thyme leaves

Preparation

  1. Combine stock, vinegar, and flour in a 6-quart slow cooker coated with cooking spray. Stir in carrots, mushrooms, onion, garlic, thyme sprigs, and oregano sprigs.
  2. Heat oil in a large nonstick skillet over medium-high. Sprinkle pork chops with 1/4 teaspoon salt and 1/4 teaspoon pepper. Add pork chops to pan; cook 2 minutes on each side. Place pork chops in slow cooker.
  3. Add wine to skillet over medium-high; cook 30 seconds, scraping pan to loosen browned bits. Spoon wine mixture over pork chops in slow cooker. Cover and cook on LOW for 7 hours or until vegetables are tender.
  4. Cook egg noodles according to package directions, omitting salt and fat. Drain.
  5. Remove pork chops from slow cooker, and keep warm. Remove and discard herb sprigs. Add heavy cream, remaining 1/2 teaspoon salt, and remaining 1/2 teaspoon pepper to vegetable mixture in slow cooker, stirring to combine. Stir in cooked egg noodles.
  6. Divide noodle mixture among 4 plates; top each with 1 pork chop, and drizzle with any remaining sauce in slow cooker. Sprinkle evenly with thyme leaves.

Recipe: The Best BBQ Chicken

Source: Family Fresh Meals
Serves: 4-6
Time: 4 hours 5 min

Ingredients

  • 2 lbs boneless, skinless, chicken breast
  • 1 cup BBQ sauce
  • ¼ cup Italian dressing
  • ¼ cup brown sugar
  • 1 Tbsp Worcestershire sauce
  • Salt to Taste

Preparation:

  1. Season chicken breast lightly (a small pinch per breast) with some sea salt and place in your crockpot
  2. In a mixing bowl combine BBQ sauce, Italian dressing, brown sugar and Worcestershire sauce. Stir until well combined.
  3. Pour over chicken, cover and cook on HIGH for 3-4 hours
  4. Once time is up, you can serve the breast whole, or shred with 2 forks. If shredding, recover and let cook in sauce for about 10-15 more minutes to soak up all the flavor.
  5. Serve on buns, over rice, in wraps, on a salad or eat plateful as is! An example would be fresh rolls topped with coleslaw.
     

Recipe: Pesto Lasagna with Spinach and Mushrooms

Source: Cooking Light
Serves: 8*
Time: 5 hours 30 min
*Freezes well

Ingredients

  • 4 cups torn spinach
  • 2 cups sliced cremini mushrooms
  • 1/2 cup commercial pesto
  • 3/4 cup (3 ounces) shredded part-skim mozzarella cheese
  • 3/4 cup (3 ounces) shredded provolone cheese
  • 1 (15-ounce) carton fat-free ricotta cheese
  • 1 large egg, lightly beaten
  • 3/4 cup (3 ounces) grated fresh Parmesan cheese, divided
  • 1 (25.5-ounce) bottle fat-free tomato-basil pasta sauce
  • 1 (8-ounce) can tomato sauce
  • Cooking spray
  • 1 (8-ounce) package precooked lasagna noodles (12 noodles)

Preparation

  1. Arrange the spinach in a vegetable steamer; steam, covered, 3 minutes or until spinach wilts. Drain, squeeze dry, and coarsely chop. Combine spinach, mushrooms, and pesto in a medium bowl, stirring to combine; set aside.
  2. Combine mozzarella, provolone, ricotta, and beaten egg in a medium bowl, stirring well to combine. Stir in 1/4 cup Parmesan, and set aside. Combine the pasta sauce and the tomato sauce in a medium bowl.
  3. Spread 1 cup pasta sauce mixture in the bottom of a 6-quart oval electric slow cooker coated with cooking spray. Arrange 3 noodles over pasta sauce mixture; top with 1 cup cheese mixture and 1 cup spinach mixture. Repeat the layers, ending with spinach mixture. Arrange 3 noodles over spinach mixture; top with remaining 1 cup cheese mixture and 1 cup pasta sauce mixture. Place remaining 3 noodles over sauce mixture; spread remaining sauce mixture over noodles. Sprinkle with the remaining 1/2 cup Parmesan. Cover with lid; cook on LOW 5 hours or until done.

Compiled and edited by UD Nutrition/Dietetics students: Emma Newell, Kim Whitbeck & Alexa Nichols

Tips for Cooking with Mobility Limitations

We hear from many of our clients about the frustrations of trying to cook in a standard-layout kitchen when using a mobility device such as a wheelchair or a walker. Many of our clients also have reduced stamina due to symptoms or treatment side effects, and standing for hours at the counter or stove just isn't feasible. Our nutrition and dietetics students researched and compiled the following tips that may be helpful for clients or others who have mobility limitations. 

Plan Ahead:

When making a grocery list, plan out the meals that you want to have for the upcoming week.

Try to purchase some ingredients for easy, healthy meals that do not not require a lot of additional preparation – For example, tuna salad on whole wheat bread.

Get GOOD microwave food – A lot of microwave dishes contain a lot of extra sodium. Beware frozen, prepared meals. Even those marked "healthy" may just be low in fat or calories, but be packed with sodium or preservatives. However frozen vegetables are in many cases as or almost as nutritious as fresh vegetables, and are easy to prepare using a microwave. You can also cook sweet potatoes and oatmeal in the microwave.

Use sources of protein that do not need to be cooked – For example, beans and nuts.

Stick with easy, grab-n-go snacks – yogurts, nuts, fresh fruit and protein bars are all good healthy choices but require no preparation and can be on-hand all the time! Also, cutting up raw veggies and fruits make for a healthy, fiber-filled snack!

creative Use of Appliances:

Use a toaster oven – Good for toasting bread, vegetables, and even meats!

Crockpots come in handy! – You can make a delicious one pot meal without using an oven. Often, crockpot meals can serve you for the whole week or last well when frozen.

Different types of ovens – If you're able to make more significant modifications in your kitchen, wall-mounted ovens with side opening doors are ideal for persons whose mobility is limited. Purchasing an oven with controls on the front of the oven is also helpful. 

Cook food in bulk:

Cooking food in bulk is a good way to make sure that you always have some food on hand.

If you can, ask someone (like your Lori's Hands students!) to come over and help you prepare large batches of food that you can enjoy over the course of the week, or freeze for easy microwaving in future weeks. Your own home cooking, frozen, will almost always be a healthier option than purchased, prepared microwaveable meals. 


Compiled and edited by UD nutrition/dietetics students: Emma Newell, Kim Whitbeck & Alexa Nichols

Dom's Walker: A Sunny Day Fund Success!

Lori's Hands recently had the opportunity to support an innovative service learning experience and a LH client through one unique Sunny Day Fund project!

From L-R: Sarah, Caroline, Dom and Erica

From L-R: Sarah, Caroline, Dom and Erica

The Assistive Medical Technologies Club

The Assistive Medical Technologies Club at UD, or AMT, is a University of Delaware student organization dedicated to designing assistive medical technologies for members of the local community with mobility impairments. AMT modifies devices that enable movement such as toy cars, physical therapy support bars, step-and-go bicycles, tricycles, kayaks, and walkers. AMT primarily works with young children, but does not turn individuals down based on age or financial status. To learn more about AMT, check out their Facebook page.

The Problem

Four of AMT's student engineers spent the last six months modifying a Lori's Hands client's current walker to enable him to cook dinner at the stove for his family -- one of his favorite activities that has been made difficult by his disease. 

The recipient of the project, Dom, has multiple sclerosis, a degenerative neuromuscular disease. Dom's old collapsible walker had a seat that allowed him to sit while he cooked, however it was set too low and he was unable to comfortably reach his counters while seated in the walker. Additionally, the walker had 360° swivel wheels in the front, but the back wheels were rigidly attached, making it impossible for Dom to move the walker from side to side while cooking. In other words, using his walker, Dom was "stuck" in one spot and couldn't shift between the counter and the stove while making a meal. There are currently no walkers on the market that have four 360° wheels. In his request to the students to consider his project, Dom exclaimed, “I don’t care how you do it. Please, I just need to be able to function in my own home.” 

The Solution

After months of planning, designing, and collaborating with Dom, AMT addressed the issue of the low seat by adding 80-20 aluminum bars under the pre-existing seat bottom to raise it up over three inches. To maintain the structural stability of the seat, an additional 80-20 bar was added orthogonally in the middle that can be removed when the walker needs to be collapsed. The bar is important because it provides a counterforce to resist the torque generated by the increase in height. Additional length was added to the strap, which one can pull up on to release the lock mechanism on the “X” shaped structure and allow the walker to collapse.

In order to add 360° swivel wheels to the back of the walker, AMT removed the current wheels and braking mechanism. The students cut several inches off the walker’s aluminum frame using a bandsaw, so that the new wheels would be level and positioned directly under the back legs for better loading. They then attached the new wheels using an “L-shaped” piece of aluminum that they machined to link the red aluminum frame of the walker to the wheel plate on the castors.

The Outcome

Dom's project represents all that makes us excited about the Sunny Day Fund! The project allowed students a real-world, hands-on chance to use their skills and education, and provided a client with support that isn't otherwise available. One of the things we love most about this project is that the students and Dom worked collaboratively on the project. Dom is a builder, designer, and fixer himself so he lent not only personal experience, but also content expertise to the project. Says student Caroline, "Working with Dom and the team on his walker the past couple of months has been a great experience. He brought so much experience to the table and really brightened up the meetings he attended." Dom is thrilled with the outcome of the project. He says the best part is the ability to "crab" or move side to side while using the walker.

The Students

As president of AMT, Erica, a senior biomedical engineer, encourages the club to innovate with the idea in mind that simple solutions often make the biggest difference. She believes innovation arises from needs, dissatisfaction, and curiosities and that the engineering solutions we need are right in front of us. Says Erica:

"Working side-by-side on the walker with Dom was so much fun and I loved how he has become a part of the Assistive Medical Technologies Club. I would like to personally thank Lori's Hands for making this project possible. Working on the walker from start to finish has been a phenomenal journey that I am so lucky to have been a part of."

Caroline is also a senior biomedical engineer who hopes to someday work with prosthetics or other assistive technologies to enable people to perform daily tasks that otherwise would be outside of the realm of possibilities.

Sarah, also a senior biomedical engineer, was inspired to engineering because of her experience watching a friend undergo a heart transplant. Hearing about her friend’s physical and mental hardships, she realized the need for novel, life-saving technologies and improvements in surgical procedures. Says Sarah:

"Working on Dom’s walker has been an amazing, eye opening, and educational experience. I learned how to benchmark and brainstorm at the beginning ... I learned how to use so many different tools and machines to create our design. Handing the walker off to Dom at the end was a moment I will never forget."

Alec is a junior mechanical engineer, with a passion for hands-on building. His construction experience in Tanzania has taught him to never stop considering what materials would work best for a project. He always thinks about how to make a design cheaper without cutting corners.

The Sunny Day Fund

The Lori's Hands Sunny Day Fund provides direct support to our clients. Thanks to our incredible network of student volunteers, we're able to provide lots of client support for no money at all. Every now and then, though, we find ourselves wanting to give back a little more. Examples of Sunny Day Fund projects include a day of professional yard work, a trip to a baseball game, or an upgraded assistive device like the one we funded for Dom, but could include anything that makes life a little better for the clients who teach our students so much. Students apply to the Sunny Day Fund on behalf of their clients only after researching other resources that could be used by their clients. In this case, the AMT students applied to the Sunny Day Fund for supplies and materials for Dom's walker modification. 

Select the "Sunny Day Fund" when making a donation to Lori's Hands to have your donation earmarked for supporting a future Sunny Day Fund project. 

A Note from Our Former Volunteer

Hi Sarah,

Happy autumn! I wanted to send a note to let you know what I am up to these days.

This June, I volunteered with the Delaware Alliance for Nonprofit Advancement (DANA) to support their annual conference. I acted as an on-the-ground reporter, interviewing attendees, taking session notes, and crafting a post-conference news release, which was picked up by the Delaware Business Times and the Cape Gazette  

The conference led to another exciting opportunity. I met Tim Gibbs, Executive Director of the Delaware Academy of Medicine/Delaware Public Health Association, and began a summer internship writing articles for the Delaware Journal of Public Health. For my first project, I wrote a glossary of terms related to violence as a public health issue and created a directory of Delaware organizations that work to prevent or address the effects of violence. I recently completed the first comprehensive guide of health-related data collection projects taking place across the state.

These experiences inspired me to pursue a master’s degree in public health, a passion of mine since I volunteered with Lori’s Hands. I’m thrilled to let you know that I was accepted to Thomas Jefferson University, and had my first day of class yesterday. I’m living in Philadelphia and plan to complete my degree over the next two years.

I’m so grateful for the way that Lori’s Hands helped me to serve others and learn about all facets of health, especially the social and emotional components. I wrote about my experience for my grad school application, and I still keep in touch my LH client, Nancy.

I hope you’re doing well, and I look forward to keeping in touch!

Best,

Maddie

Fall Prevention

Alyssa's education materials from the Fall Prevention workshop at Easter Seals in New Castle

Alyssa's education materials from the Fall Prevention workshop at Easter Seals in New Castle

Millions of people over the age of 65 fall in their homes. Many older adults, our Lori's Hands clients included, want to age in their homes. Accidents happen and falls are, unfortunately, a part of aging for many people. However, there are many ways to prevent falls. As part of my summer internship with Lori's Hands, I attended an Easter Seals Disability Services workshop on Fall Prevention for Older Adults at their New Castle location. Guest speaker Adam Samuel from Avenue Medical spoke on “Accessibility in the Home: Simple Solutions to Complex Issues”. Avenue Medical provides assistive technology and accessible home modifications for older adults with disabilities. These modifications provide a safe and functional home environment so people can remain in their homes.

At Lori’s Hands, we want to provide a safe and accessible environment for our clients. I learned some tips at the Easter Seals workshop that we can all use when working with our clients. To reduce the chance of falls in our clients' homes, we can:

-Improve lighting. Brighter lighting helps a person see better and can prevent falls. Place lamps near clients' beds and open curtains to let in sunlight.

-Keep floors and stairs free from clutter.

-Make sure rugs and mats are skid proof or secured with carpet tape.

-Pick up or move items that may cause an accidental fall.

-Roll up hoses and pick up tools in the yard.

-Make sure all handrails are firmly attached.

-Make sure entrances/exits are accessible to walk through.

-Move hard-to-reach items to lower levels in cabinets and closets.

Next time you're out helping a client organize, clean or put away groceries, think about how you can do more than help with a chore -- think about how you can help prevent a fall. 

Written by: Alyssa Benjamin

My Summer of Service Learning

One of Alyssa's clients has her check out a "magic eye" game during a visit 

One of Alyssa's clients has her check out a "magic eye" game during a visit 

According to the University of Nebraska, service-learning experiences are important for undergraduate health care students. In particular, when students work with older adults, they gain skills and experiences as they engage in intrinsically rewarding service activities.  After working with older adults, undergraduates' empathy levels increase and, often, a strong intergenerational companionship develops.

I have definitely developed strong relationships with my older adults clients this summer. During my service learning internship experience with Lori’s Hands, I have made it my goal to make our clients happy and do what ever I can to make their days amazing. I also want to help our clients be aware of their home environments and make their homes safer for them to live in as they age in place. I love working with different clients every day and building great relationships with them.

One of my clients, Ellen*, is married but recently her husband has been admitted into a nursing home. Ellen can no longer provide care for him because he is very ill. On our visits, we help her with grocery shopping, putting away her groceries, and cleaning her kitchen. We also pick up loose papers and items around her living area and put them in safe places that won't put her at risk for a fall. She is always so appreciative of everything we do for her!

Each week, I also visit Edith* to get her groceries. Edith, my volunteer partner Christina, and I discovered that our birthdays are two days apart from each other - we’re all May babies! 

Alyssa and her student partner pick up groceries for a client

Alyssa and her student partner pick up groceries for a client

I also visit a World War II veteran who looks forward to talking each week, a client living with MS who loves swimming and barbecue sandwiches, and so many other interesting people.

I have loved getting to know our clients this summer and have experienced what the researchers suggested comes from service learning - truly rewarding intergenerational relationships. 

Written by: Alyssa Benjamin

Source: Gelfand, Donald E., and James P. Firman. "Developing and Implementing Service-Learning in Aging." University of Nebraska Omaha. Web. 31 May 2016.

*Names changed for privacy

A Physician in the Making

Victoria doing yard work on her visit.

Victoria doing yard work on her visit.

When I first began volunteering for Lori’s Hands I did not foresee the wonderful impact it would have on my life. I didn’t realize that helping my clients with simple household chores would be appreciated so much. Every week I go to a 90-year old couple’s home to help with anything they need; from mopping, vacuuming and dusting, to weeding and raking leaves or even miscellaneous tasks like changing light bulbs. Tasks that seem simple to many, but to them they are very difficult. Both the husband and wife suffer from chronic illness and have limited capabilities. Almost every time I visit them, they had a doctor’s visit earlier that day and they always give me updates on their health status. Whenever they tell me that they don’t feel well and their pain is worse that day it’s heartbreaking to me because I hate seeing anyone in any type of pain. My main motivation for becoming a physician is that I want to alleviate people’s pain, not just physically but mentally as well. I wish I could cure all of my clients' health problems, but since I can’t, the least I can do is help them with whatever they need in their household. I hope that by taking away some of the chores they have, it reduces a considerable portion of their stress so they can focus on other things.

My favorite memory with this couple was this past December when I helped set up and decorate their Christmas tree. It was truly saddening to hear that they hadn’t been able to put their tree up the past few years because they didn’t have any help. I gladly helped decorate as much as they wanted even though it went past the usual hour time frame. The couple is very religious and I knew that Christmas was an important holiday for them. I’m so grateful that I was able to help decorate their home and make it feel more merry. 

Helping my clients has showed me just how difficult people’s lives can be when dealing with chronic illness. Before this, I had never spent as much time with people who had so many daily limitations. I have shadowed many doctors in many settings including the I.C.U, but I had never gotten to know the patients as well as I know my clients. Now I can better understand just how difficult life outside of a hospital setting can be for patients.  Going forward and pursuing a career in medicine, I will use my experiences and new perspective to acknowledge all the difficulties that patients face. I am so grateful to have had these experiences with my clients and I look forward caring for their yard and simply cleaning their home on a weekly basis. I care for them and their health very much and I only wish that I could help them every day. My experience with this wonderful couple has been only positive and gratifying as I am always greeted with a smile and sent off with a hug.

Written by: Victoria Longo

HLTH320

When I first signed up for my HLTH320 class, the class that goes along with the Lori’s Hands club, I knew that I would be working with people who had been diagnosed with a chronic illness, but I was unsure and apprehensive about how I would be able to handle this situation. As a nursing student, I was hoping to gain skills about working with patients and how to talk to them about their illness. 

Before my first visit with Dave, I really did not know what to expect and was very nervous to meet him. I was not sure if I should treat him like a patient or like a friend. I did not know if we would have things to talk about or if we would just be sitting there in silence. I did not know if Dave would be an approachable person or someone who just kept to himself. 

When Dave opened the door upon our first visit, I had never seen someone smile so big before in my life. I immediately felt very comfortable and welcomed in his home, like he was someone who I had known for a very long time. Dave was so friendly and instantly began talking to my partner and I like we were old friends of his. We prepared dinner and all ate together at Dave’s kitchen table, talking, laughing, sharing stories, and learning about each other’s lives. I really enjoyed the first visit with Dave and was surprised at how casual our conversations were. 

Every week after that I looked forward to seeing Dave and I was excited to hang out with him and just talk. At the end of each visit, we would talk about what meal we would have at our next visit. We even prepared a Thanksgiving dinner in November, complete with turkey, stuffing, mashed potatoes, cranberries, and pumpkin bread. These visits quickly changed from a requirement that I had to fulfill in order to pass my class, to an event that I looked forward to week after week. 

 

Written by: Leslie Hirshberg

From Class to the Club

I originally joined Lori's Hands for my HLTH320 class, but after just one visit with my client, I realized how much I enjoyed being a part of the organization. My client is a woman with multiple sclerosis and I visit her every week. My partner and I mostly help her with paperwork, but the most fulfilling part of our visits is the conversations we share. My client lives by herself, so each week when I visited her she expressed how great it was to have our company. As I got to know her better, I truly got to see what a funny and sweet woman she is. With each passing week, I found that I was getting just as much out of my visits as she was. I learned how much she LOVES getting cards from people, so we brought her a card one visit after we found out that she had recently celebrated her birthday. She was so touched by such a small gift and it felt great to be able to make her smile. Sometimes we talk on the phone throughout the week. As my semester in class came to an end, I was saddened to see my visits end. Then I received an email from Sarah, the founder of Lori's Hands, asking me to be a scheduler for the club! I'm so excited to be a part of Lori's Hands and so glad that I'll be able to continue my visits with my client and others!

Written by: Amanda Painton

By Your Side: Making life better for people living with Alzheimer's

Sometimes people ask me why I decided to found By Your Side--a startup focused on building a unique, personal safety beacon for those who are diagnosed with Alzheimer’s disease.  In my case, the reason was simple necessity.  My father, Milo, was diagnosed with Alzheimer’s in the summer of 2013, and he was a man who loved to go walking and he loved being free.  But, because he loved to go for long walks, he was known as a wandering risk. When someone is a wandering risk, they are likely to go for a walk, or a drive in their car, and just keep going without coming back. And that was a risk for Milo. So, I looked around for solutions that might be on the market, in the wearable tech space, but didn’t find what was needed. What I needed was a device that went with him, like on a keychain, and would signal me if he got into harm’s way. It needed a long battery life, a signal if he was out in weather that was too hot or too cold, a way to signal if he fell and got hurt, and a way to find him on a map if any of that happened. Because the search for that solution failed, I talked with some of my team members from a previous start up, explained what I was thinking of doing, and asked if they wanted to take a swing at it.  And, to my great happiness, they agreed. We’re building By Your Side, an Alzheimer's-friendly personal safety beacon that gives you continuous awareness of where your loved one with Alzheimer's is, at all times, and alerts you if they wander, or fall, or get into extreme weather even right outside their own front door. By Your Side uses meticulously configured, state-of-the-art and non-intrusive GPS location technology, temperature sensors, accelerometers, and low frequency CDMA modems with assisted GPS and trilateration, and a month-long battery life in the size of a domino--based on our field research with institutions such as Brookdale, the Banner's Alzheimer's institute, Caregivers, and Health Care Professionals. 

Written by: Dr. Greg Elofson, CEO, By Your Side

More Than a Patient, More Than a Nurse

“Hi my name is Tricia and I'm going to be your nurse today...” In March of 2014, the introduction I’d spoken many times over my past 20 years as a Registered Nurse changed my life forever. I met Tricia Somers, a 45-year-old single mother, who was recovering from a minor surgical procedure. Tricia Somers (yes, same name as mine, same spelling, same initials T.S.) was diagnosed in October 2013 with a rare form of liver cancer. Initially, doctors thought the cancer would progress slowly and simply have to be monitored. By the time I met Tricia, she was experiencing severe abdominal pain and knew that her disease was quickly changing.  Throughout my evening of caring for Tricia, we talked about her 8-year-old son Wesley. It was very obvious to me that Tricia loved her son very much and being away from him was difficult. Tricia was hospitalized for 3 weeks during that stay. I was never assigned to her again, however, I visited her every time I worked, just to check in on her and say hello. On the day of her discharge, I walked in to say goodbye. The mood of the room was very solemn. A social worker sat quietly beside Trish. I apologized for interrupting what seemed to be a very serious discussion. Trish assured me that it was ok and she was glad I had stopped. "The results came back from the biopsy and the cancer has spread... it's terminal.” My heart sank for her. I hugged her, told her how truly sorry I was and that I’d keep her in my prayers, and turned towards the door. Trish stopped me, "I'm really glad you stopped in, I was afraid I would not see you again and I have something I need to ask you. If I die, will you and your husband take my son, and raise him?" I think my heart literally stopped at that moment. I was speechless. Still in shock, I encouraged Trish to take some time to think through her options, and maybe consult with an attorney. We hugged again, parted ways, and never exchanged a phone number, email or anything. But I knew I'd see her again. t’s been 8 months since I met Tricia Somers for the first time. On May 17, 2014 she and Wesley came to live with our family. I feel as though we lived a lifetime in the 5 months she lived with us. We have so many wonderful memories to treasure. It was certainly not easy adjusting to new family members. For Trish and Wesley, it had always just been the 2 of them, and now they were in a family of 8 people! Thankfully, Trish thrived on the chaos and constant activity! In October, Trish's health really started declining and we both knew our time together was getting short. On October 17th, with the help of our wonderful Hospice care team, the decision was made to transfer Trish so that she would be able to receive round-the-clock nursing and comfort care. We visit her often, but it is not the same. Each time I pass her room here in our home I think she should be in there. Our journey now continues with little Wesley in a whole new way. We are trying to provide comfort and support to a little boy who is losing the most important person in his life. But I believe with my whole heart that God has this whole journey in His plan.  think the most important thing I have learned from Trish Somers is to live life to the fullest, each day. She has taught me not to worry and fret over the little stuff. With Trish, the sunshine is a little brighter, the breeze feels extra good on your face, and the sound of the crickets on a warm summer night have never sounded so beautiful. I'm not sure I will ever do my job the same again. Or perhaps, I will show more compassion, more patience, more grace than I ever did before. As we head towards the holiday season this year, I encourage each one of you to take the time to cherish those you love. None of us are promised tomorrow.

Read more about Tricia, Tricia, Wesley and their family's incredible story here and here


Closet Clearing for Your Client

I’ve spent much of the last five years supporting women with chronic illness, which has often meant helping people to organize their closets, something that makes a surprisingly big difference. 

A clear closet can make every day that little bit easier, which can help with both physical and mental health. It can be an emotional process as throwing out old clothes forces your client to mourn the loss of the life she once had ("one day I'll weigh what I did before this illness took over my body"), or the dreams she had that now seem lost because of illness (“I was looking forward to wearing that on my trip to X but I had to cancel it because I got sick.”). 

However, it’s worth it! You’re relieving your client of a huge burden, allowing her to let go of emotions that weigh her down, and on a very practical level you’re removing clutter from her life and making a daily process much easier. Here are 4 simple steps for quick but effective closet clearing for your client:

1. Sort every item in the closet into three piles 'Keep', 'Donate', ‘Trash'. Your client need merely sit on the bed and direct you while you do the physical work. Make sure that the 'Keep' pile includes only clothes that fit and are wearable NOW! If illness causes your client’s weight to fluctuate, pack the seasonal keeps and keeps of different sizes into suitcases or labeled vacuum bags, and put them somewhere away from the closet.

Make sure that very item of clothing going back into the closet is wearable NOW! This means that they’ll no longer be spending energy rummaging through things that don’t fit them, and getting lost in the emotional turmoil this triggers. 

2. Use Non-Slip Hangers

Has the closet floor become a graveyard for clothes and the beginning of a mess that resembles a rummage sale? Use slim non-slip hangers to ensure that your good work lasts long after you’re finished organizing.  

3. Create Sections

Sort the closet into sections: Skirts, Dresses, Pants, Tops and then sort each section into colors.This will help your closet scan the closet and pick outfits quickly, making the morning closet stop a pleasure.

4. Grab and Go

Keep the items they prefer to wear regularly in the most accessible part of the closet so your client can open the door and immediately pick an outfit with no need to rummage. Put daytime wear at the front and center of the closet and evening wear in the most inconvenient spots.

Remember, this task is a big deal for your client. Approach it with an open heart, a desire to help and a big smile and you’ll find that what first seemed a chore becomes one of the most rewarding things you’ve ever done for someone else. 

Lottie supports women with chronic illness to create the life they really want despite their chronic illness at lottieryan.com. In her past life she was a Major Gift’s Senior Fundraising Manager for a major UK charity and over the years has worked with hundreds of volunteers doing all manner of support activities.

Volunteering 101

We all have the ability to help. I’ve realized that Lori’s Hands volunteers have so much to offer the clients they visit. They can bring energy and warmth into the lives of older adults and people with chronic illnesses.  Students have skills and abilities that they can use to assist individuals with essential tasks that they would otherwise be unable to do for themselves. This semester, we have many new volunteers, so I thought I would share some thoughts on how to become the best volunteer possible in your new role with Lori's Hands! For our current volunteers, there are always ways that we can become more effective helpers! What tips do YOU have for our new volunteers? What do you do that makes you an effective member of the Lori's Hands team for our clients? On Empathy Empathy is the ability to understand and share the feelings of another. This is one of the most important characteristics of a volunteer. Many Lori’s Hands may be in a state of vulnerability due to their illnesses. Volunteers must be understanding and caring. We must be able to place ourselves in the shoes of these individuals and think about what type of support they might need. When clients feel that we care and are working to understand their unique situations, they are more likely to open up and connect with us.

On Self-awareness When we are volunteering, we will often encounter individuals who are different from ourselves. They may live differently than we do and they may have different views. When working with people, we need to be aware of our perceptions and how they may affect our ability to help. We must be understanding and accepting towards others. If we notice our views getting in the way of our effectiveness, we should take a step back and reevaluate our approach.   On Active Listening In order to help others, we need to listen to them and truly hear what they are saying. Lori’s Hands volunteers may need to ask pertinent questions to their clients in order to understand what they really need. At times, individuals may not be open about their wants and needs. They may feel uncomfortable asking for help and may not realize that our volunteers are more than happy to be of use.  Active listening can help to open doors to discover valuable details about what our clients really need. On the Unsaid Lori’s Hands volunteers will be more effective if they not only listen to their clients, but also read between the lines. Effective helpers are sensitive to a client’s body language, social cues, and patterns of behavior. Through being observant of these things, we can better interpret the thoughts and feelings behind them. This may help us to identify changes in our clients and monitor their status throughout the time we are volunteering.

Written by: Noelle Menchini

Noelle is a senior Human Services major, Disabilities Studies minor at the University of Delaware. She has been involved in Lori’s Hands since her sophomore year and has scheduled for two of our clients. She is now the Lori's Hands at UD Communications Chair for the 2014-2015 year. Noelle says that Lori’s Hands has taught her not to underestimate the power that a small act of kindness can have for an individual.

Inspired By My Sister

From the moment Madison, my sister, was born she spent countless hours of her young life in and out of doctors offices. Ear infections, asthma, pneumonia, strep throat, thrush, sinus infections, and bronchitis—it was always a new diagnoses, a new course of treatment. But the big picture was constantly being overlooked, why was she always sick? Multiple ear tube implants, tonsil and adenoid extraction, upper and lower endoscopy and there was never an end to the illnesses.

At the age of 7 Madi was diagnosed with Common Variable Immunodeficiency (CVID). Despite its title it really is not a very "common" disease in which the immune system does not function properly to fight infections. As with many diseases, there are options in the course of treatment. Currently Madi receives weekly IgG infusions subcutaneously.  This medicine boosts her immune system so she can participate in “normal” daily activities like being in the 7th grade and not get sick by every germ she encounters.

Being a bystander on this journey that started pretty much as soon as Madi was born was often times very difficult. Although I was a child myself, I felt my parents' concern and frustration, which impacted our family. I believe that witnessing my sister's struggles is thereason I decided to go into nursing. It exposed me to the trials and tribulations of coping with chronic illness, and how important caring nurses are not only to the patient but the whole family. As a junior nursing student as University of Delaware I am reassured daily that this was the best decision I ever could have made. I credit my sister for a lot of things in my life, but I thank her everyday for being the reason I decided to become a nurse.


Through my best friend and roommate Sydney Scheiner I was introduced to Lori’s Hands, and specifically Edna and Warren Watt. These two people have been bringing so much joy into my life since Fall Semester of Sophomore year. After I left their house on my first Lori’s Hands visit I knew I would return shortly. Little did I know I would have the opportunity to see them at least every other week and be blessed with all their warmth and love. Lori’s Hands has become one of the most important aspects of my college career and I am honored to be a member of a club filled with so many people who want to make a difference in the lives of others.

Written by: Brianna Hafetz

 

Mom on a Mission: End NF

On December 31st, 2001 I took a pregnancy test. When I looked at the test results and realized that they were positive, I couldn’t believe it. I had a feeling that I was pregnant but I had an even stronger feeling that something wasn’t right. The months went by and I was never able to shake the feeling that something was wrong. 

Throughout my pregnancy AJ our first born said that he wanted to name the baby “Ladybug.” Not only did he say that he wanted to name her “Ladybug” but he was also dead set on that fact that the baby I was carrying was going to be a little girl. AJ was not far off in his predictions for many reasons. 

When Julia was born we noticed she had a small brown café-au-lait on her left arm. A café-au-lait is a pigmented birthmark and as Julia grew, the number and the size of these café-au-laits increased. They became a freckling of spots, or “polka dots” as Julia calls them, which are all over her body, resembling the meaningful spots that characterize a beautiful ladybug. The random nickname that AJ had wanted to name his baby sister before she was born didn’t seem so random anymore. These café-au-laits are one of the characteristics of Neurofibromatosis. 

A day after we brought Julia home from the hospital, I was exhausted.  That night my husband and I put Julia down to sleep and I got into bed, with the hopes of dozing off immediately. As I was lying in bed, my husband went to the bathroom.  He called me into the bathroom and when I got there I couldn’t believe what I was looking at, the window which was covered in ladybugs.

As time went by little things came up. Julia's systems did not seem to function correctly. She suffered terrible constipation, stomach pain, had horrible gag reflexes, was always getting strange fevers and she was growing at a very slow pace. We kept bringing her to doctors but they kept telling us the same thing. Time after time we were told that she was fine and not to worry.

When Julia was four years old, she had another high fever. When the pediatrician checked her this time, he noticed the café-au-lait spots had multiplied and that she now she had freckling under her arm pits. He immediately referred us to a neurologist and told us he suspected an illness called Neurofibromatosis. He told me not to look it up before we knew if Julia really had it. 

After endless doctor’s appointments, Julia was diagnosed with NF1; one of the types of Neurofibromatosis. I’ll never forget the first year after my daughter was diagnosed. I'd wake up every morning and the reality would hit me hard. It felt like a constant slap in the face. I'd remember as I woke up that this was the new reality we lived in. Our life became a new land of uncertainty. I felt as thought we wouldn't be happy again. How would we laugh and enjoy ourselves? I though our lives would forever be veiled by this disorder. 

And although our life is different, we've somehow adjusted to this new reality. It's been eight years since Julia's diagnosis. It’s been eight years of ups and downs, of sleepless nights, of non-stop worrying. It’s been eight years of pain that's physical and cuts right through you so deeply because its your child your watching in pain. It's your baby no matter how old she gets. 

It has become our mission as a family to fundraise to find a cure to end NF. Since our efforts began, we’ve raised $400,000. We have been on the “Today Show” and have been invited to visit the Obama’s at the White House. The fundraising we've done has given us control over the out of control. We also know that when our children grow up we will be able to look them in the eyes and say we've done everything we can do, that there has been no stone we've left unturned and nothing we wouldn't do to help their sister.

Written by: Laura Perfetti 

Laura Perfetti is lucky enough to be married to Anthony for 17 years who helps pack lunches every morning for their 4 kids: AJ (15), Julia (12), Jacqueline (8) and Alex (6). She also teaches 4th grade, chairs a PRIDE committee in her school, but her biggest battle is to end Neurofibromatosis. Laura was elected to the Children's Tumor Foundation Board of Directors in 2012 where she proudly chairs the Community Relations Committee. The Children's Tumor Foundation is currently the leading organization researching neurofibromatosis. For more information visit www.ctf.org


On Positivity

 

An athlete wins the Tour de France bicycle race after recovering from cancer. An actor becomes a film producer, lobbyist for spinal cord injuries, and a source of inspiration for thousands after becoming a quadriplegic from a horse riding accident. 

A scientist from Cambridge makes incredible advances in black hole and relativity theories in spite of being unable to walk or talk due to Lou Gehrig’s disease. 

From these people, we can all learn the importance of a positive attitude. 

In 1977, I was going to college in Bloomington, Indiana. Things were going along as normally as they can in college, but I began to have problems standing up. Then I began falling down occasionally, then falling down more and more. But I was young, and didn’t want to admit that anything was wrong so didn’t do anything about this clumsiness.

After college, my first job was in Denver as a computer programmer. After about a year there, I became homesick and moved back to Indiana, again working in computer programming for various organizations.

I would like to use a passage from the book ‘The Tao of Pooh’ by Benjamin Hoff:

A saying from the area of Chinese medicine would be appropriate to mention here: ‘One disease long life, no disease, short life’. In other words, those who know what’s wrong with them and take care of themselves accordingly will tend to live a lot longer than those who consider themselves perfectly healthy and neglect their weaknesses. So in that sense at least, a weakness of some sort can do you a big favor, if you acknowledge that it’s there. The same goes for one’s limitations, whether Tiggers know it or not, and Tiggers usually don’t. That’s the trouble with Tiggers, they know they can do everything. Very unhealthy. 

Once you face and understand your limitations, you can work with them, instead of having them work against you and get in your way, which is what they do when you ignore them, whether you realize it or not. And then you will find that, in many cases, your limitations can be your strengths.

Written by: Dave Mills

Edited by: Joan Wheele

Dave is one of our ferociously positive Lori's Hands clients. 

Nicole Rodriguez-Hernandez: My Journey to Becoming the Lori's Hands at UD Vice President

Candy bar for a quick fix. Check. Loose dollar bills for the vending machine. Check. Blood sugar kit to know everything’s alright. Check. That list (usually with many other items) has crossed my mind countless times. My mother has had Type 1 diabetes since she was five years old. When I was five years old, I started to learn that list and the signs of hypoglycemia. In my family, I was always the best person to help her and ensure glucose stability. Now that I am away at college, my sister is starting to take over my role and share the responsibility with my stepfather. My mother’s chronic illness has been a family affair.

My mother may have a chronic illness, but she has never let it stop her from doing everything a person without a chronic illness does. That’s what I love about my mother. She does not succumb to her illness, she puts in every effort to control it and lead a “normal” life. Since she was little she played sports, did well in school and now works full time; as a parent she was always at all my soccer games, my sister’s orchestra concerts, back-to-school nights, and now even move-in days for college! Through her resilience and effort, I found my own strength: the compassion to take care of her on worst days, the determination to do my best, and the love to help
others. 

Enter my freshman year. My second semester of freshman year, I decided to take the Honors Colloquium course titled “The Human Experience of Chronic Illness.” I was excited to learn new material that was so different from my major (public policy). I loved learning about various chronic illnesses, not only the facts, but hearing how real people and their families were affected. Type 1 diabetes was one of the topics we covered and I immersed myself in the subject as much as possible! Now I am more informed about the illness, and the many other illnesses we discussed. Nevertheless, the best part of the class was being involved with Lori’s Hands. I was fortunate enough to have the founder of Lori’s Hands, Sarah LaFave, as an instructor in that class. Through our required visits for class, I fell in love and I knew I had to be a part of this organization. Soon after, I was an official volunteer and through what I think was a stroke of good luck, the executive board decided to bring me
onboard as Vice President! 

Now, at just the beginning of my sophomore year I have the chance to become even more involved with this organization! I know my work, time, dedication will be well-spent on our amazing clients and student volunteers. Helping the Newark community and seeing the direct impact is a great feeling. I am excited for this school year and to meet the new clients, the new club members and get started on all the wonderful ideas we have for Lori’s Hands! 

Written by: Nicole Rodriguez-Hernandez

Nicole is currently a sophomore honors student with a Public Policy major and minors in Organizational and Community Leadership and Urban Education. She hopes to be involved and work in the non-profit sector, specifically with organizations working in education (especially for disadvantaged youths) in the future. 

Nicole (center) and fellow LH 2014-2015 UD Officers Emily and Ashley "paint the town teal" to raise ovarian cancer awareness in September

Nicole (center) and fellow LH 2014-2015 UD Officers Emily and Ashley "paint the town teal" to raise ovarian cancer awareness in September

Our Journey With The Star That Won't Go Out

In 1994, a beautiful, fluffy-haired daughter joined our family.  Esther quickly demonstrated her easy-going, cheerful disposition, and her two older sisters adored her.  Nineteen months later her little brother joined us, and she quickly took on the role of friend--and then mentor, as it became clear that his development was delayed. With his significant speech issues, Esther became her brother’s interpreter and champion.  When Graham was diagnosed with Klinefelter Syndrome, our family energies went into making sure that we advocated for him in the special education system, and that we gave him every advantage of a loving, supportive family.  The girls were marvelous at including him in their play activities--I remember many a time when he took the role of son, puppy, or maid as they played house!  We set our goal to help him achieve independence in as much of life as possible, but knew as he progressed that some level of care would fall to us for the rest of our lives. We adjusted gears and expectations, continued to research and advocate, and moved forward.

Deciding that the family unit was adequate support for Graham, we went ahead and followed our dream to expose our children to life outside the USA, moving to Saudi Arabia where my husband taught ESL for three years.  While we lacked some of the sophisticated support from speech and physical therapists, we had oodles of hours together for outings to zoos, amusement parks, shopping expeditions, and trips to the ocean or on jetskis and dune buggies- and in that culture, Graham was a favored child, primarily because he was the only son!!  

 

We returned to Massachusetts for a few years, had another surprise addition to our family, and then threw caution to the wind to follow a dream to work with a non-profit in France. Our children jumped into the French local schools (except for Graham, who had an English-speaking tutor at home), and my husband and I studied French in an intensive immersion program.  We moved closer to our target city of Marseille, prepared to make this work for the long term.  As summer moved into fall, our inexhaustible Esther became easily fatigued, and began to cough.  Fearing pneumonia or TB, we took her in for xrays.  On Thanksgiving day of 2006, we were told our 12-year-old daughter had metastasized papillary thyroid cancer.  Surgery followed, and then the ongoing care of radioiodine treatments to poison the cancer cells in her lungs.  Overwhelmed and needing more support, we returned to Boston for her care.

 

Esther received amazing care at Boston Children’s Hospital and later Dana-Farber’s Jimmy Fund Clinic. We felt so fortunate to have caring and creative doctors and nurses, and were blessed to live in a state that had insurance plans to cover our medical expenses.  Financial stresses still crept in with lost work, and we struggled to balance the needs of our children--when Esther was diagnosed, our other kids were 17, 15, 10, and 3.  Advocacy for Graham got pushed to a back burner, because we only had so much time and energy.  We worked hard to be a family, and to include everyone in our new normal.  When hospital stays took us from home, my husband and I took turns so that we could be with her.  We did things on Esther’s bucket list like eating lobster, letting her start a Video Blog channel,
dragging home a free piano, and indulging her need for books.  So when she winsomely asked about an upcoming Harry Potter fandom convention in Boston, we coughed up the fee and agreed to take her daily to participate.

 

And that decision changed her life.  Esther met John Green, the young adult author
that she idolized.  They became friends and interacted often in the months ahead. 
When her Make-A-Wish dream of visiting her online friends by traveling around the country in an RV became too much for her health, John and his brother Hank helped bring some of those friends to her in Boston, where Make-A-Wish sponsored an amazing 4th of July weekend bash replete with a Wizard Wrock show, firework party overlooking the Charles River, Limo rides to the theatre, a luncheon cruise on the Boston Harbor, and days spent in a hotel with heart friends that she had never met before in real life.  John joined the party for a day, and history cannot adequately recount the joy of that day!

 

We lost our Esther a little more than seven weeks later.  They were weeks packed with loving and living and administering medical care, and chronic pain, and
laughter wherever we could fit it in. We were carried by many arms around us
who hosted a fundraiser, brought us food, sent Esther gifts, and cared for us.  We were isolated in our little world that illness creates, yet Esther always fought to live beyond that limitation.  She invited a few significant friends for her 16th birthday.  She made videos and wrote in her journals.  She was part of the inspiration that raised $250,000 for her favorite charity, The HP Alliance. She colored with her brothers, and wrote a 12-page letter for Father’s Day.  And she got to see the creation of a holiday of love, named in her honor by the Green brothers.

After her funeral, we realized that money had started to trickle in over purchases of the bracelet designed for Esther’s Make-A-Wish weekend.  It seemed only natural to start a fund to give those monies away to help other families going through the kind of stress we had experienced during Esther’s four years of treatment.  This Star Won’t Go Out was birthed, and today continues to make an impact for families faced with the diagnosis of a child with cancer through financial grants and family support.  

I know that Esther couldn’t have imagined the success of the book that John Green wrote and dedicated to her, but she wouldn’t have been surprised that others found his writing irresistible.  And somehow it feels like she might be smiling about the book of her journals, fiction, letters, and artwork published in January 2014--after all, in second grade she wrote that she intended to become an author.  Today, her words continue to inspire, motivate, and encourage teens and
adults alike with her message to love others, and to live life fully, no matter the shortness or length of days.  

Four years ago this week she died and, as might be expected, Esther’s death has been unimaginably difficult on all of us. Although she is irreplaceable (In fact, she is still very much our daughter and sister, even in her absence), we have continued to build a different kind of family, with perhaps the most painful evidence seen in the effect her death has had on her little brothers, especially Graham who has filled his room with her pictures and on Abraham who will know her more as ‘someone who went away’ rather than as someone who was very much here. Still, we are proud of the way our children continue to cherish their sister and the way each of them has dedicated their lives to valuing what was important to her. That’s just one small piece of her pretty amazing legacy.


Written by: Lori Earl

Lori is the Director of This Star Won't Go Out, a non-profit that financially assists families with a child living with cancer. In 2011, the Earl Family founded TSWGO in honor of their daughter Esther, who died at age 16, four years after her diagnosis of thyroid cancer. 

Lori works as an Instructor and Student Success Coach at Quincy College. She is a certified English teacher, with degrees in Psychology and Intercultural Studies. Lori is passionate about encouraging others to move towards wholeness, live life fully, and make a difference in their world. Asked what is most important to her, Lori is quick to say it’s her family. She and her husband Wayne have two other grown daughters, and two sons, one in high school and one in elementary school.