Woman Of The Week: SHARON SNYDER
Sharon Snyder, Mom, Personal Chef (Cater to You), Montgomery County Resident and Founder Kisses for Kyle Foundation, speaks with Marilyn Russell

By Marilyn Russell

Our Woman of the Week this week is Sharon Snyder who experienced the painful loss of her first son Kyle who was less than two years old when diagnosed with Lymphoblastic Leukemia. He fought bravely through blood transfusions, surgery, bone marrow aspirations, spinal taps and an enormous amount of chemotherapy, but lost the fight and died October 15, 1998 (at only 2 years/7 months of age). Sharon’s mission is to keep Kyle’s memory alive by helping other children who must endure cancer treatments and to help their families in various ways throughout the process.

WOTW: What was happening with Kyle to suspect something might be wrong, were there signs?
Sharon: They were most apparent during the week of his diagnosis. He was bruising and the bruises were not going away, but increasing. Towards the end of the week, he started getting, what we know now as Petichae, broken blood vessels right underneath his skin. He appeared a little more tired than usual and was also a little pale. Kyle had just been exposed to the chicken pox a week earlier and not knowing what they looked like, I thought he was getting them as well. When I first brought Kyle to the doctor’s office that Monday, I questioned his pediatrician and she said that it wasn’t the chicken pox, it looked like a rash and everything else appeared fine. She said that if anything else developed to let them know. After finally getting over to CHOP and having Kyle admitted, we had talked to many Oncologists and nurses and from what I understood, it sounded as if Kyle had only had his leukemia for maybe several weeks. Kyle was born healthy; occasionally he would come down with the little infections all kids get, but nothing out of the ordinary. When you think of a child with cancer, one of the first thoughts is they are very sickly, it isn’t something that just appears out of the blue. There was absolutely no warning for us. One day, we had our healthy, beautiful, energetic little boy, and the very next day he was diagnosed with what wound up being a fatal disease to him.

WOTW: Sharon, what was your reaction when you got Kyle’s initial diagnosis from the physicians?
Sharon: Both my husband and I took Kyle to his physician’s office late Friday afternoon on February 20th. That was the second visit we had made to them that week. We knew something was terribly wrong, but when they told us to go to the local hospital right away, my heart sunk and it had felt as if my breath was just taken out of me. I remember questioning the physician on call about why they had to draw Kyle’s blood in hopes that he would miraculously say something that I could wrap my thoughts around. We waited for what seemed like an eternity for the results to come back. I looked up and saw Kyle’s pediatrician walking through the door. Nearly 8 years after the diagnosis, I can close my eyes and replay every second of what happened next. At first I thought.... how nice, it’s a Friday night and she wanted to make sure everything was all right...not realizing that she wanted to be the one to tell us our not yet 2- year old son was diagnosed with cancer. She walked towards us and I said to her, it’s not good, is it. She said it’s not, but we need to talk. I started backing up in the room and backed myself into a corner until I could go no further. I started shaking and said, you have to leave and come back in a little while...thinking that if she went away, I just might wake up from this very vivid nightmare. She said that she couldn’t leave and the results had come back. She said Kyle had leukemia. She had to hold me up while she explained everything, as if she hadn’t done so, I would have collapsed right there. All the while, I kept thinking, my poor baby needs me but I can’t even take care of myself right now. The words and reality were too much for my mother’s heart to handle.

WOTW: How did going through all this effect your relationship with your husband, family members and friends?
Sharon: After 7 plus years, living with this type of trauma still affects us on many levels and with many relationships. We are still married, we have two beautiful children...Kyle, who would be 9, turning 10 in March and Jake who is 3, turning 4 in March, and is such a love and joy. Every relationship for both of us has been altered somehow. When you have a child that is stricken with such a devastating disease and then to have them die, it would be impossible to think that wouldn’t change you and the world around you. We have family members who walked away, and when you have already suffered such a strong loss, you don’t want to have to grieve anyone or anything else. We have had to endure grieving a lot of lost relationships. Some individuals don’t know how to deal with something so tragic, and if you are not the parents who are forced to live with the pain 24 hours a day, it is easier to walk away from the every day pain instead of working through it. This loss also altered or put an end to some friendships as well, unfortunately. Although people who love you understand you are in pain, and for the most part realize that they could not imagine how profound this pain is, it’s human nature to feel uncomfortable and to walk away from feelings that don’t feel good. That’s not to say, we don’t have relationships any longer.... we do, and some of them are very close and I am beyond grateful to those who stood by us. I am also very grateful to those individuals who have met me after I lost Kyle. Some of the closest relationships I have ever had have been formed after my loss.

WOTW: It’s been seven years this year since your loss, how have things changed?
Sharon: Things have changed in so many ways. Some of it is very hard to sift through to see if who I am now is a direct hit of my loss or just a natural progression of who I really am. I tend to think it is a combination of both. I will never know who I would be today had Kyle remained healthy and we were blessed to have him here physically with our family unit. I do know that I work harder now. I don’t like to waste time...I try and be as productive as I can. I am a very honest and genuine person and generally don’t tolerate dishonesty. When I see someone doing something to benefit themselves at the expense of others, it affects me in a very negative way. I also tend to speak my mind...if you ask anyone in my life, they would confirm this statement for sure! I want/need to be heard, because I feel the information I can share is important and may impact others around me in a positive manner. The pain we live with is still so strong. It feels more real now that time has gone by. When Kyle first died, everything was so confusing. I would look at where he used to stand, sit, lie down, and exist. I remembered him being everywhere. I remembered his oh so sweet voice saying so many cute things. I remembered him saying, “I love you mamma.” I remembered his hugs and kisses and they way it made me feel, but at the very same moments of remembering everything, his physical being did not exist any longer and the thought of him never being here every again was almost too much to comprehend. I did not function very well...I was just existing but not really living. I forced myself to get through each day with a faint thought somewhere inside of me telling me that one day I will want to live again, so don’t give up...keep pushing yourself. Today, I am living and not just existing. I have the love of my husband and both my sons in my heart and in my life. I continue to take care of Kyle with the love I have for him, just like I take care of Jake. I can no longer take care of Kyle physically, so now I take care of his memory and allow his love to live through me. If given a choice, my choice would be to take care of him the way parents are supposed to take care of their children, but in life sometimes you are not given choices...then you must decide what to do with what life throws in your direction. My decision has become to live for the moment and to live with Kyle in my heart always.

WOTW: Tell me more about your second son?
Sharon: He is Jacob Kyle Snyder and is 3 years old. He never had the opportunity to meet his big brother, but with the way he talks about him all of the time, that fact is very surprising. The other week, we had given Jake a few coins to toss in the fountain at the mall. He made a wish and said I wish Kyle would come back home. He says that quite often, asks about heaven, how to get there and why isn’t Kyle here with us. He talks about how much he misses him and although he didn’t have him in his life physically, I’m sure there is a huge part of him that does miss his big brother. As much as my heart is sad for Kyle, my husband and myself, my heart breaks when Jake talks about how much he wishes Kyle was here. It is one of those bittersweet times in which I experience sadness and joy at the same moment. I am glad that Jake talks about Kyle and incorporates him into his life. My hope is to always talk about Kyle to each other and as Jake grows older, he will find his own ways of keeping Kyle in his heart and keeping his spirit and soul alive.

WOTW: Why is it so important for you to help other families going through this?
Sharon: I know what it is like first hand to live with a child who has cancer. I also know what it is like when your child is hospitalized and everything that was “normal” to him has been forcibly taken away from disease. Kyle used to love to play at Chuck E Cheeses, go to McDonald’s, take swimming lessons, play with all of his friends, go to birthday parties and everything else that goes along with doing all of the fun things children should have the opportunity to experience. Once Kyle was diagnosed, everything he loved to do was taken away. During the early stage of his diagnosis, we couldn’t even give him his favorite thing, a bubble bath. As a parent, you want to be able to not only protect your child, but you want to see them happy and content. When I realized that I couldn’t protect him from everything and I had to also tell him, I’m sorry honey but you can no longer do this, or do that...I’m sorry, but you can’t go to Sesame Place or a special show in town that your friends are going to, I did what most other parents in my position wind up doing. I was grateful for what we still had and lived with the hope that one day Kyle’s hair would grow back, I would be able to take him to places he had missed out on, we would make great memories now when we could and in the future we would share more great memories. Kyle was only sick for 8 months before he died. It was a whirlwind and a shock that he didn’t make it. Almost immediately, I formed the Kyle Snyder Memorial Fund, and then in 2001, I turned it into the Kisses for Kyle Foundation. Initially, the need to help other children was driven from wanting to continue to take care of Kyle, and not wanting to let go. I was also driven by the knowledge of what it’s like to live through this life altering experience. I remember being in the hospital and the nurses coming by with presents, sent or dropped off by complete strangers, for Kyle. Knowing there were such caring people out there touched me on a level that is very difficult to express. I wanted to do that for other children and their parents. I stopped working the day Kyle was diagnosed. I continued to work with my own business with a few select clients when Kyle was well enough and my husband was able to be home with him. Other than that, our income was nearly cut in half. I wasn’t concerned about finances; I was just concerned with having my child healthy once again. When that didn’t happen, I focused on my grief and money was still not much of a consideration. At the time, someone very close to me offered some financial assistance. I was so grateful but at the time I didn’t realize how much help was actually being given to us...I still existed, but I was very numb. We hesitantly took the money and within a year had managed to pay it back. We wound up seeing acts of human kindness on many levels and I felt the need to do the same to other families who were now living with this pain. One aspect of how Kyle’s illness and death affected me the most was how I feel as though I have witnessed and lived through so much pain and bad feelings that I can not do enough good now to even that pain out. So, I am always trying to do some good. It helps me to not only function, but helps fill that negative gap in me.

WOTW: Tell me about the bereavement group starting up in the spring?
Sharon: When Kyle died, I was in search of anything and everything that could or would help me get through. I found that there weren’t many resources available to parents who’ve lost children, especially specifically to cancer. I went to various support groups...some were better than others. Two things wound up helping me the most. The first was our therapist, Dr. Sally Brown. At the time, it didn’t feel like much help. When we would drive there, I felt as though I just wanted to jump out of my own body to get to Kyle. I couldn’t figure out how I could live with this amount of pain and the constant need to be with him. In time, the therapy started to help and then we stopped going. What I had learned, I began to incorporate into my life. I also joined an on line support group for parents who have lost children. It was very therapeutic for me. Many of the parents suggested that I actually become a grief counselor, but I knew I couldn’t bear to constantly hear about everyone else’s pain and deal with mine at the same time. But I really wanted to reach out to other parents to try and help them. I wanted them to know that they weren’t alone and one way or the other, they would not only survive, but they would be able to live a good life. After many years, I finally got up enough strength to pursue starting a bereavement group through my foundation. I contacted our old therapist and met with her several times. She agreed to facilitate my group and the Radnor Hotel in St. David’s are gracious enough to donate their space to us.

WOTW: Does the foundation have any scheduled fundraisers coming up?
Sharon: We have a lot of great benefits planned for 2006. The dates have not been decided at this point. Here is a summary of fundraisers to give you an idea of what we hold annually.... Children’s Fashion Show and Afternoon Luncheon (October), 5K run and 1 mile fun walk (late summer, early fall), raffles and lottery, we set up space at the Baby and Toddler Expo at the Fort Washington Expo Center (April). We have also held some wonderful family fun days, cut-a-thons and beef and beers. There is a great cookbook coming out the end of January, called “Katie’s Cooking,” in which our foundation is one of three charities who will be receiving the proceeds raised from the sale of the book. This isn’t any ordinary cookbook. Katie’s Wish is another local organization dedicated to raising awareness of childhood cancer. Katie’s mother put together an amazing and very inspiring cookbook with about 800 recipes including recipes from both celebrity chefs from across the country to many local and national top-notch restaurant chefs. Some of the donated recipes are from Emeril Lagasse, Rachel Ray, Sandra Lee, Le Bec Fin and many more! I am actually honored to be included in the book on a few different levels. Not only will part of the proceeds go to our foundation, but, there’s a picture of my precious Kyle in the book along with information about him and our foundation. Being a Personal Chef, I have also contributed over 10 of my own recipes to the book. Sandra Lee of Semi-Homemade has written the forward to this book. Information about ordering a copy of the cookbook can be found on our website www.kissesforkyle.org as well as at www.katieswish.com. Our foundation will be hosting several benefits surrounding this cookbook later on this year, including a food-tasting event. There will also be several events hosted at area restaurants that’ve contributed recipes. The foundation also accepts donations year round from individuals as well as through United Way contributions from individual’s work.

WOTW: What’s next for you Sharon?
Sharon: Marilyn, we are a very small grass roots charity and we are looking to grow in a huge way so that we can help families on a much larger scale. As of now, we make financial grants to help families with bills they are struggling with while their children are being treated for cancer. The grants are maxed out at $500.00 per family per year. I would like to one day not have a maximum amount and help each family on an individual basis. We also accept and purchase gifts to give to children throughout the year. We sometimes mail care packages out to children who are at home and we also make trips to the hospital to deliver gifts. We just visited CHOP on New Year’s Eve to drop off a bunch of gifts. We started throwing celebratory parties for children who have successfully completed treatment for cancer and we will also be financing the bereavement group. Our foundation is looking for hardworking, determined and caring individuals who would like to either join our committee, volunteer their time to help us grow, or people to help us get our name out there. If someone is interested in joining our cause, please contact me at 215-657-2098 or kisses4kyle@comcast.net. We have had some tremendous support within our community for which we are grateful. There are various businesses that have reached out many times to assist our foundation. BAE SYSTEMS in Lansdale has hosted our fundraisers for the past three years. They have also donated much-needed funds as well as many volunteers. We have been so grateful and honored to have their assistance. We have also had the opportunity to partner with the Office Depot. They not only made a wonderful donation to help us out with administrative costs, but they also were sponsors of several of our benefits this year. Many other companies, some of which include The Hartford, WOGL, CN8, Outback, Mary Kay and many other companies, have also reached out with very generous donations and support on various levels.
Right now, the main focus is to reach the masses and have people know who we are. We need many more people to come out to our events and to help us generate awareness. Thankfully, all of our benefits have been a great time and are first rate. We get nothing but positive feedback from attendees. Once we’re at the point of having a full house at each one of our events, we will begin to be able to help our families on the level I am reaching for…from a mother’s heart to many other children out there that need our warm embraces.

Article from: http://www.philly.com/mld/philly/living/people/women/13450878.htm