A sister’s legacy
Disease, “a fatal, inherited disorder of the nervous system that begins in childhood.” Evelyn’s disease had progressed to the Unfortunately, finding work point that she was not the easiest task, was blind, had and I finally came to the to be tube fed, realization that, with had frequent the economy in such seizures, and a downturn, there was was, for the no way I was going to most part, find employment anybedridden. time soon. So, with Evelyn atsome advice from my tended a speparents, I turned to cial-needs what I know and love school, The best—kids. Porter CenNow, I was always ter of that girl at family reLenawee Inunions, graduation termediate parties, or any other School Disgathering who would in be sitting in the corner Even though she is gone, Cathi still affects my life trict, Adrian, MI. in a profound way. This was taken of us shortly with someone’s baby So my reor playing with all the before her death. sponsibilikids running around. ties would include getting Evelyn As a little girl, I begged my mom for and Rachel on and off the bus, giving a little sister until, at five years old, medicine, tube feeding, and all the my wish came true. Growother tasks associated with caring ing up, I was the girl for two young girls. It was also my babysitting the neighborresponsibility to pick Evelyn up from hood kids, and I just kept school if it was a bad day and watch on babysitting. her for the remainder of the day. In my mind, this was nothing I couldn’t handle. So I agreed to give the position a try. I was used to taking care of younger kids running amuck and getting into everything, so this would be a challenge that I would definitely be up to, not to mention just the break I needed to fall into my lap. So, just a few short weeks after my initial meeting with Sue, I began
by Eleanore Sharkey
vividly remember, I was six years old and my “big sister” needed my help. At 23, Cathi had asked for my help fixing her hair. So there I stood, barely tall enough to reach the top of her head, trying with everything I had in me to fix her hair exactly the way she wanted it. I don’t recall the outcome of that particular situation, but knowing Cathi, she probably left her hair just the way I had done it regardless of whether it was perfect or not. I was so young that I cannot remember when my cousin Cathi came to live with us, nor do I recall when she was diagnosed with Von Hippel Lindau. But I do know that Cathi’s losing battle instilled me with a profound need to help others. I visited Cathi’s grave a few short weeks ago. As I stood there reading her name and the inscription on the headstone, the numbers hit me quite simply—Cathi had been 23 when she passed away, and here I stood just one year younger than she had been when she died. To be quite honest, I felt embarrassed. At 22, Cathi had battled a debilitating brain tumor with a smile on her face while here I was, age 22 and just having left school, not knowing what to do with my life. I had no idea who I wanted to be or even who I was. It was then that I began to look at my life. I went home feeling more connected than ever to my sister and determined to figure out my life. On the drive home, my mom and I had a conversation regarding the role each person plays in a family and how each person takes different memories, thoughts, and lessons with them as they grow. Cathi had affected my life and the lives of my three siblings in very different but equally important ways. How had I taken what I had learned from Cathi and honored her memory? July 2009—After a very rough semester of college, and realizing I wasn’t cut out to pass accounting class with flying colors, I made the very difficult decision to leave the college of business. Burned out and disappointed that I wasn’t cut out to be a corporate business woman, I felt that taking some time away from school would be just what I needed.
Top left: Ellie poses with Evelyn. Above: Evelyn is ready for Funny Hat Day at school. Left: Evelyn and her sister, Rachel, share precious moments of laughter.
After a positive experience with an online sitter website, I decided to hit the sites with as much force as I could. And yet, I found nothing. Feeling defeated, I was just about to give up my search when a message found my email box. Sue from Blissfield, MI needed a nanny for her two girls: eleven-year-old Rachel and seven year old Evelyn, who had special needs. With one last hope and my strong ties to Blissfield, I decided to meet with Sue. Sue and I hit it off. With her warm personality, she explained that at three years old, Evelyn Rose began her battle with Late Infantile Battens
my daily routine of getting the girls up, giving Evelyn her medicine, feeding her, picking out the cutest outfit I could find, brushing teeth, making sure Rachel had eaten and was dressed appropriately, and making sure both girls made it safely on the bus and off to school. In the afternoons, Rachel would get home, and we got in the routine of getting her homework done as quickly as possible. Then we found something fun to do until Evelyn arrived home an hour and a half later. After Evelyn got off the bus, I would get her in bed, make her as comfortable as possible, and, depending on how the day had gone, I would then split my time between the girls accordingly until Sue made it home from work. With support from the school, who kept a notebook tracking Evelyn’s day, and Sarah, the girls’ summer sitter who helped get me acclimated to the situation, I fell into a routine. The situation, which was sometimes overwhelming on those frequent bad days, began to become more and more bearable as I became more confident and realized that even the bad days were nothing I couldn’t handle. So, the school year progressed—
Do you feel depressed?
To learn more... Von-Hippel Lindau (VHL) is a rare genetic disease that causes the abnormal growth of blood vessels that can lead to a much higher chance of growing tumors and cysts. For more information, visit www.vhl.org. Batten’s Disease is a genetic disease that causes children to suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten Disease become blind, bedridden, and unable to communicate, and it is presently always fatal. This information was taken from the Batten’s Disease Support & Research Association. For more information, visit www.bdsra.org.
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Announcing a medical research study for people with depression. Depression isn’t just feelings of sadness—it can affect the way you see the world. Your body may feel constantly fatigued, and your mind may dwell on thoughts of worthlessness and guilt. If you are currently depressed and not taking an antidepressant, you may qualify for a medical research study to determine the effectiveness and safety of an investigational medication for Major Depressive Disorder. If you qualify, you’ll receive investigational study medication, study-related medical exams and lab tests at no charge. Financial compensation for time and travel may also be available. To learn more, please contact:
Research Coordinator Kettlie Daniels, MD 980 South Byrne Street Toledo, Ohio 43609
(419) 823-9251 25
and Evelyn progressively got worse. Hospice was called in the winter months. All the medicine and supplies would now be sent directly to the house, and, on top of that, we were sent our own nurse. She would stop by the school or home to check up on Evelyn about once a week. This also opened up a 24/7 call line for emergencies or just for answers to questions we may have had. I decided to stay on for the remainder of the summer, and Sarah and I decided to split days to make things a little easier. July brought Evelyn’s eighth birthday, and her birthday party soon followed. Just a few days after that, I was brought back to that moment at Cathi’s grave and to the realization that I was making her proud. I am a firm believer that after high school, kids are rushed into making some of the biggest decisions of their lives, decisions that many adults aren’t prepared to make. How is it possible for an 18-year-old to decide what to do with the rest of his or her life? I have learned more in the past year than I could have ever learned sitting in a classroom. Education is such an important part of life, and it is a personal goal to finish my own. But I also truly believe that young adults should be encouraged to spend less time worrying about who they are going to be and more time realizing who they are. Then they may begin to see exactly what they have to offer to the world and to find more strength in themselves to help and see the
good in the people around them. A year ago, I would never have believed I would have the mindset I have today. I wake up every morning knowing that every breath I take is a blessing. I have learned that I have strengths and talents and that I can use them. Life isn’t solely about graduating college, finding a job, and starting a family; it is about the impact we have on the people around us and the impact others have on us. I sit here today a stronger, more confident person because I opened my heart to a family who touched me more than they will ever know. This job has given me not only knowledge and a different outlook on life, but also another family. Losing a child, whether you are a parent, sibling, or caregiver, is not in vain. Like all the events in our life, as unfair as this may seem, good can come out of it. If I hadn’t lost my sister 16 years ago, I would be a very different person than I am today—a person who may have never met Sue or Rachel or Evelyn. Many people have stories like Evelyn’s or Cathi’s to tell. The more support families have, the more bearable the situation becomes. Today, I know that I may not have battled a horrible disease, but I know that I have carried Cathi with me and that when the time comes, I will carry another angel, Evelyn Rose, with me as well. ❦ Ellie Sharkey is a Nanny and is learning graphic design.
Fr. “O” to present Raising Ordinary Boys into Extraordinary Men
or 40 years, Fr. Ronald “O” Olszewski has been helping parents raise their sons to find meaning, purpose, and value in their lives. As a teacher and principal at St. Francis de Sales High School, he has 40 years experience of teaching young men about life’s issues. Fr. “O” understands with compassion the mental, physical, and emotional development of the young male. He understands the challenges they face on their journey to manhood. He also understands the challenge parents have in effectively communicating with, relating to, and raising their sons to be men of character in today’s world of conflicting messages. With practical experience, humor, and wisdom, Fr. “O” will help you to express love to your son in ways your son understands and appreciates, teach you how to encourage and support your son through adolescence, and offer you suggestions to help him improve his self confidence. All parents of boys will be inspired by his talk. Please join him on Thursday, October 14 at 7:00 p.m. in the St. Francis Chapel located at 2323 W. Bancroft Street. The presentation is free and open to the public. Come listen to Fr. “O” share his expertise and insights on the very important topic that he knows and loves so well—your son. 26
NEWS FROM THE TOLEDO ALLERGY SOCIETY Back to school with allergies and asthma
or kids returning to school after a relaxing, carefree summer break, it can certainly be difficult to “shift gears” and focus their attention on academics. But for children with allergies or asthma, the transition back to the classroom is even more challenging. After all, it’s not so easy to concentrate on the subject matter at hand and perform to the best of your abilities when you’re constantly distracted by itchy, watery eyes, a runny nose, or wheezing. Dr. Sudhir Rao of Asthma & Allergy Center notes that the back-to-school season coincides with an increase in airborne weed pollens (e.g., ragweed) and mold, which are common allergy triggers. Kids are also transitioning from the relatively controlled environment of home to a setting where they may be exposed to a different set of allergens, such as dander from the class pet. “If your child is experiencing symptoms that could be related to allergies, such as itchy eyes and nose or something more serious like asthma, you need to see a doctor to determine if the symptoms are being triggered by something that can be avoided. Trigger avoidance is the first line of defense and is often useful in making a child’s quality of life much better when he or she goes back to school,” states Dr. Rao. Another very important issue that has been coming to the attention of allergists in the past 10 to 15 years is food allergies. Parents of kids with known allergies to foods such as peanuts, eggs, or wheat usually do a pretty good job of keeping an eye on what they eat and are exposed to in the home. However, when they go to school, where lunchroom food sharing is commonplace, they may be at greater risk of exposure to their trigger food.
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“Communication is the key to counteracting this risk,” Dr. Rao says. “Kids with food allergies are usually fairly knowledgeable about what they need to avoid, but their classmates and teachers will have no idea. If your child is allergic to a particular food, it’s vital to notify the school about the allergy and meet with the child’s primary teachers and principal to see what policies are in place. Then, parents need to work with school personnel and an allergist to determine the best way to reduce the risk of exposure at school.” Children who are allergic to insect stings should be alerted to the fact that bees and other stinging insects are at their most active in late summer and early autumn—just as school is coming back into session. Parents must also discuss the situation with school personnel so they are apprised of how to respond appropriately in the event that the child is stung. Furthermore, children who are prone to life-threatening anaphylaxis in response to insect stings or exposure to certain foods must carry with them a current epinephrine self-injector at all times and are advised to wear a medical-alert tag announcing their allergy. Any medications prescribed by their doctor to prevent anaphylaxis should be kept on hand at school, as well. Older students with allergies or asthma who are heading off to college need to consider the impact their changing environment could have on their symptoms, as well. “While most college-aged allergy sufferers know their limitations as far as outdoor allergens are concerned, they may not be aware of how living in a dormitory or apartment with a roommate might aggravate their symptoms,” SEPTEMBER 2010