Friday, October 29, 2010

A year later

It's been a year since Ashley passed away and I've been on a mission to find a cure for EOS and to stop bullying. It was a very emotional day and the balloon release in her memory was overwhelming and awesome. There are so many wonderful people out there! Thanks to all of you! I am moving on and have the same passion as I did last year. Life has started to settle down a bit. I still have anxiety and nervousness when trying to do some of the things in life that we take fro granted. It will get better, I know. I just want to continue to help others if I can and to continue to fight against bullying.

Monday, October 25, 2010

Coming up on the year

As I face the memories that led up to the day Ashley died, I am filled with grief, anger, anxiety and sadness. There are happy times, too. One thing that stood out in my head that night as I stood in the cold night and felt like I was in the middle of a CSI movie was that she had slept in my bed the night before and was very snuggly and close. It's like she was saying goodbye to me in a way that was soft and less hurtful. I had talked to her on the phone 3 times that day and she seemed ok. After I went back to work, i looked up all the e-mails that she'd sent me, usually funny, and put them in a folder to save. Anytime I see a picture of her that I don't have or haven't seen, I get excited. I am feeling as down as a person can feel today, but I know there are so many people praying for me and thinking about me and the family.

Tuesday, October 5, 2010

Moving on


Today is October 5, 2010. Almost a year ago I was fighting to save my daughter's life and barely doing anything else. My whole life revolved around making sure I had the food she could eat and the nutrition she needed. I never expected the tragedy that was coming up and continued to do what I could to make her comfortable and give her happiness. Since that time. I have become very involved the the EOS world and hope to spread Ashley's story to raise awareness and research funds. I now have her headstone in place and it is beautiful! I know she would be proud. I have met so many wonderful people this past year and feel wealthy with friends. I have a future ahead of me, I just don't know what it is yet and am patient. I am taking the day off today to reflect and relax. I am going all the time, but that is the only way I can make it. Otherwise, I want to sleep all the time. Life hasn't been easy and I've made some bad decisions, but I just keep putting one foot in front of the other every day.

Thursday, July 8, 2010

I just found out that Ashley's headstone has been shipped. I am so anxious to see it! I know she would have picked out the same one that I picked out for her. When it arrives at the cemetary and is installed, I want to have a little celebration for her life and what her spirit has done for the EOS world. I want friends and family around me because I know it will be hard. She love clowns and balloons, and told her cousin Kayla jsut how she wanted it to be. I will follow her wishes.

The pain is still there and somedays it weighs me down. I know the headstone will give some finalization and less guilt to me for having trouble even facing the fact that I had to pick out a headstone for my only daughter and child.

Thursday, May 13, 2010

Picking out a headstone for Ashley


This has been a very tough time emotionally, picking out the headstone and then choosing what I want to say on it. I can't seem to find the words that I want to say. There are too many of them and none of them say it all. I feel like I just want to lay down and go to sleep. It is harder than ever to keep going right now. I do know that this will pass, though. At least when I go to her grave now, I will feel like I haven't let her down as I did in the past because there wasn't a stone. Anyway, I'm not sure how I made it to work this week and even concentrated, but I was able to complete several projects. That tells me that I can do it, no matter how hard it is.

Sunday, April 25, 2010

A huge suprise

I received a call on Friday from a Kansas City Star reporter wanting to talk to me about Ashley's life. I talked to him for an hour and mentioned apfed.org, the bullying, the fact that her disease was never diagnosed properly and she was always thrown in a psych ward. I want the article to be about Ashley, but I want to also bring to light the problem these kids face in the public school system and life in general. I also want to bring attention to the fact that too many teenagers are thrown in psych centers and from then on, they believe there is something wrong with them. Helping others is what Ashley wanted to do so I want to carry on her legacy. I hope to bring more awareness to EE and EOS and raise more money for the cause. This has given me something to REALLY look forward to!

Saturday, April 10, 2010

Moving On

Well, here it is Saturday, April 10th and I can see how much better I am doing at handling the past. I've decided to get out and socialize and meet new people so my life can become more positive. Hanging on to the past is bringing me down and stopping me from living my life as I should. Going to the funeral of a friend from the past (he committed suicide) and meeting his family and seeing them grieve has opened my eyes to the fact that suicide can hit any of us or our families at anytime, unannounced. The shock seems to never go away and linger on your shoulder shouting at you. I have accepted the fact that I will never be the same, I just hope to be a much kinder and thoughtful person than I was before. I also will loosen up, relax and have fun. Life is too short and I am still full of life! I thank everyone who has supported me and my family during this tragedy of losing Ashley. She would be setting here with her beautiful eyes saying 'Mom! Go out and have fun and enjoy yourself!'

Monday, March 15, 2010

REFLECTION.....

As I set here tonight, sleep will not come to me, so I am using this time to reflect. I remember right after Ashley passed on, I noticed new knowledge and grants being announced for EE and EOS. Each time I would see this, I would feel so happy, yet grief overtakes me and I feel so sad that Ashley isn't around to celebrate with me. It is so bittersweet! I want to cry but I can't. I do spend a lot of time reflecting on her strengths and specialties. She was such a beautiful and loving girl. She had a heart of gold. I know her spirit is out there helping each child who is suffering like she did. I can see her come up behind the little ones and grabbing their shoulders and saying "I am doing what I can to help you!". She would probably be a little shy with the older EOS teens, especially if they were bigger than her.
Facebook has been a huge support system for me before and after her death. Everyone has been so kind and supportive. I don't know how I would've handled it without everyone, especially the EOS families.
There are days I can't read Facebook because it really gets me down to see all the kids suffering so much. Then there are other days that I have great strength and read every post. I feel so strongly about keeping these kids positive and want to do what I can do to help. Life is too short, we all need to do what makes us happy and continue to educate everyone we touch. The more people know about this disorder, the better it will be for the kids who suffer with it. I still think the hardest part of the whole disorder is getting the schools to understand. Ashley tried to be so strong everyday and fit in and she just wasn't able to. I miss her terribly and have trouble seeing the future at times. I know there is a lot for me to do, and I am ready!

Thursday, February 18, 2010


Ashley was born a healthy 9'11'' baby girl on January 4, 1995. She loved to eat just about anything and was vibrate and happy. She definitely marched to a different beat and was her own self. She made me laugh everyday. I couldn't wait until the day she was able to look at me and talk to me about anything. Her dad and I divorced when she was 2 years old. I remarried when she was 5 years old to Dave. Ashley loved him and wanted him to be her daddy. When Ashley turned 7, she says she woke up one day and she was different. She could no longer eat without stomach pain. She was having terrible stomach aches every time she ate so she stopped eating over time. I got an appointment with Children's Hospital in Kansas City in the Gastrointestinal Clinic. They ran test and found that she has a high WBC count. They continued to run test and put her on 8 medicine's at once. She couldn't go to school because she was so drugged out and couldn't stay awake. Throughout the next year, we were in and out of the ER only to be sent home with no diagnosis. One time, Childrens Hospital sent two big burly guys in the room to accuse Ashely of getting in the medicine cabinet. I told them if they thought they were gonna scare me, they picked the wrong person. Ashley begged for a feeding tube, but they said that was nothing wrong. This went on for a year without anything being done except her losing weight and getting sicker and sicker. At this time all she was taking in was Ensure and nothing solid. She was 61 lbs and you could see her ribs. I faxed a letter to Mayo Clinic in Rochester, MI asking for help. They called me the next day with an appointment scheduled for the next day. We drove there and spent the day visiting clinics and doctors. They have one of the best gastrointestinal doctors there. She was very instrumental in getting the test we needed quickly so they could determine the problem. They determined that she is 100% lactose intolerant and allergic to everything outdoors and many foods. We came home and a week later drove back to see a Psychiatrist and Eating Disorder Specialist. They said she was not far from death as some of her organs were already damaged. They immediately put her on an IV to nourish her. She was on the IV for 2 days then started the eating program to teach her to eat again. She was in the unit for 6 weeks. When we came home, she weighed 70. At home, I continued the eating program with her until she reached the goal weight. I had to home school her as she was not able to set in class. She was home schooled for 3 years and just this year, went back to school in the 9th grade. She started eating on her own and is now 90lbs and healthy. She still suffers from EOS and has a very limited diet that she can eat without getting a stomach ache. Today, her knees are very frail and she cannot participate in anything that involves impact on her knees. Her favorite sport is swimming which has no impact on her knees. We feel very fortunate that we were able to get help just in time. My heart goes out to the kids who aren't so lucky or are still suffering. EOS invloves a long learning process of what you can and cannot eat. It also changed the way I cook. We never know when we go somewhere if she will get sick and we have to go home. She cannot go to restaurants because it makes her sick (the smell) and she turns white as a sheet with red splotches and can't stand up. She has learned to use breathing exercises to get through the stomach aches which has enabled her to go back to school. Her resilience and strength is unbelievable.

On October 26, 2009 I came home to find my daughter dead. She had committed suicide. She left plenty of reasons why and the number one reason was the pain and that no one would listen to her or her mother.