December 30, 2006 Hi all, Well thanks for the prayers. I am finally out of bed and able to get around although still not at 100%. Long story short; went to St. Mary’s ER on Friday night and they gave me an antibiotic (very strong one) and said it was probably a lymph node infection but could be cancer…blah, blah, blah. I called my Doctor Saturday to let him know what was going on and he said give it a few days. My swelling got progressively worse, it spread, and my fever would not break so I went to my doctor on Tuesday and got a shot of antibiotics and he switched my drug. The swelling began to decrease and finally I am without fever and on my way back. That was not fun being in bed for 6 days straight. Turns out my soft tissue under my skin was infected and probably was the result of shaving with an old razor under my arm. I hope everyone had a wonderful holiday and found yourself surrounded by loved ones. What can I say? I’m missing Leah more than ever and still can’t believe she is not here with me. Guess it was good I was sick because it forced me to stay in bed over Christmas and Christmas Eve. (sort of a diversion?) We took a stocking to the grave site and wrapped it tightly in plastic wrap. Life stinks when one is missing. Sorry but I didn’t get around to finishing all my Christmas cards so please forgive me if you didn’t get one. I was going to finish up on Friday and woke up ill so that was that. Phil cooked the turkey, wrapped the gifts, and waited on me hand and foot the poor guy. He really needs a break I think. Looks like I will be retiring from Ford on 2/28 so if anyone wants me to bring the clothing line to their house for a house party please let me know. It is so much fun. I will also dedicate time to getting organized with paper work and my house!!! Kylie is doing well and again is the only reason we keep going. That poor child cannot take anymore grief so I try to be as good of a Mom as I can possibly be. You know I love children and I always wanted to have at least two girls. I feel I was a great Mom and it seems like such a shame that Leah was cheated of her fun life. Oh how she loved her family and life!! My little Leah, Mommy misses you and loves you so much and I can’t wait to see you again. xoxoxoxoxoxoxo Thanks to all for continuing to follow this website and please remember to check out Leah’s Happy Hearts at www.leahshappyhearts.org. You have all become an important support system for us and we thank you from the bottom of our hearts. Thanks to all that have donated to our non-profit and if you haven’t seen our bracelets please check them out for they are so cute. They come in small, medium, and large. I hope everyone has a Blessed New Year and a Healthy One!! Karen Kylie and Leah’s mommy forever

December 24, 2006 Peaceful Holidays everyone. Just a really quick note to say I need some prayers right now as I have swollen lymph nodes. Could be an infection but could also be cancer so I’m praying that is not the case. I have had a high fever for 3 days now and I can’t seem to get out of bed. Bummer uh. The Detroit News did a nice little article on Leah’s Happy Hearts last Thursday in the metro section. It was very nice of them to do that as more people are now aware of the fact that we are doing something to help others. My little Leah, I miss you so much and I love you to the ends of the earth and back. Take care little one. Mommy to Angel Leah and Kylie

December 9, 2006 Time to vent. I was in a store the other day and somehow got to talking about Leah with the women waiting on me. She said, “Oh, you are doing much better than I would be doing, wow.” Ok, so I bit my tongue and was thinking in my head, “Have you no clue?” Of course I wanted to say a lot more but I just said, “it is very hard” and walked away. Now I feel as if I love my children more than anyone else can love their own children. Bottom line is every good parent feels that way. Nobody loves their children more than I love mine. We all love our children and we would all argue that we are the greatest Mom to anyone that we encounter. My point is the stupid things that people say have to be swallowed and we must remember that they don’t say anything intentionally but it is just they don’t know what to say so sometimes. All if forgiven but for the record I loved Leah and still do love Leah and Kylie more than I ever thought possible. If there is a maximum amount of love you can feel for your child I am there and then some. I’m torn up inside and my heart is crushed into little pieces but I have to keep going. For Kylie’s sake, for Phil’s sake and for my own sake. How am I expected to be? Crawling on my hands and knees not bathed, drunk and eating junk. I just need to vent and I realize most of the population is wonderful and have been very supportive. There is just the occasional line someone says that makes you go “uh?” My neighbors (the Doulette’s) put up the most awesome heart with a halo on their rooftop in honor of Leah. We also have a purple heart with a halo on our front lawn. Thanks Paul and I have to say they both look great. I’m sure Leah can see them clearly and is thankful for the love her family and 2nd family are showing her. I always still wonder where heaven is. Can she hear me and see me? It’s amazing how something this tragic can bring you closer to God. I feel like I am closer to God than I ever have been yet I’m still angry at him. I teeter-totter back and forth with my emotions. One day I am so thankful and feel so blessed for being Leah’s mommy for 51/2 years and the next day I feel so cheated and robbed and unblessed. Reality is that I am very blessed for having a wonderful husband, 2 beautiful children, and that we both have jobs that provide us with a decent life. Speaking of jobs, mine is going away the end of February and they say when one door closes another opens so time will tell. Christmas without Leah stinks. Kylie is always lonely and I feel so badly for her. We have been busy with obligations and commitments and I can’t wait until Christmas Day when the gatherings are over. It just doesn’t seem whole or complete without our Leah. I put a Dora doll and a rubber ducky on Leah’s wreath at the cemetery and I will add a Christmas stocking as it gets closer to Christmas. Please sign the guestbook and remember for every $5.00 donation to Leah’s Happy Hearts you get at free bracelet. Please visit www.leahshappyhearts.org for more information about our non-profit organization. All donations are now tax-deductible. I hope everyone has a blessed Christmas with good health and much safety. Thanks to all who continue to be there for us. Karen Kylie and angel Leah’s mommy forever My dearest Leah, I miss you so much and I want you to know that you will always be in my heart. I hope that I am in yours forever and ever. I miss your voice, your hugs, your kisses and most of all I miss you running up to me when I pick you up from school and you yell “Mommiee” and I hug you tightly after a long day at work. I miss you saying you gave me much such as “much ice cream”, “much peas”, and I miss you saying your heart is happy. God I miss you. We all miss you. I hope you hear me talk to you each day and that you see me blow kisses up to the sky especially when the stars are out. Wherever we go and whatever we do we miss you and nothing is complete without you. I will always be your mommy and you will always be my baby girl. I’m taking good care of Kylie and I love her very much too. Daddy is doing ok too along with Batman but we all miss you so much. Take care my angel and please remember to send me some more signs. Mommy I Love U!!!! Merry Christmas Angel

December 2, 2006 Hello everyone, Well I’m sitting here drinking my tea and I was just reading through all of the old guestbook entries. Wow – there were so many people praying and supporting us that it made me cry. One, for all of these people praying why wasn’t she healed? Two, I don’t think I ever properly thanked all you. I think of this often. When you lose a child you feel like life is so unfair (it is!) and you enclose yourself in this pity party where you know you need help and support. You tend to not think about the other things around you. Anyway, I want to say “Thank You” to everyone that signed the guestbook, sent a card, gave a hug, attended the fund-raisers, and to anyone that gave so generously in any way shape or form. As sad as I am I want you to know that each person and each word made a difference in our lives. I cherish my guestbook and go to it when I am feeling alone. Please know that I am so thankful for all of the wonderful people we have had in our lives and those that continue to listen. Really I am. I am attending a play at a church today called “The Glory of Christmas.” I think it is good to be reminded of what Christmas is really all about and to take the focus away from all the commercialism. I have to say the part I dread though is when they show Jesus healing a child. The child is lying on the ground assumed dead and Jesus lifts the child and the child comes to life. I get teared up in the part as I say to myself, why not my child? Why not any parent that watched their child be taken from them? Why? That we will never know. There are some children not doing so well right now and two of them are doing the one treatment I often wonder if I should have tried. I guess it goes to show you that nothing seems to work for this ugly monster of a tumor. It is a death sentence 99% of the time. Some treatments may buy you time but then if you add quality of life into the picture, it all comes out to about the same length of time. Don’t get me wrong, there are a few out there that are surviving. I know of 1 that is about 3 years out and another that is 5+ years out. One did radiation and chemo and the other just radiation and a natural diet. It makes me sick to think of all the children that are being diagnosed with tumors and there is very little that can be done. Again, why?? The days go by and I’m just hanging on. I’m eager to get Leah’s Happy Hearts going and doing some good in this difficult world. I think I’m going to try another support group as I know I need something. Nothing seems to make me feel better. Spending time with Kylie is the best thing in my life and she is growing up so fast it scares me. I wasn’t ready to give up those fun young years with Leah and boom, they were taken from us. All the dreams and hopes we had for Leah are gone. You see with a child you don’t only lose the present but you lose the future. All those things you looked forward to doing with this child are gone. We will never be the same people we were before. I imagine it will take a long time before we can ever really enjoy ourselves again. Inside is this horrible hole that will never be filled in. Somehow we have to learn to live with it. Leah has a piece of my heart with her and I carry a piece of hers in mine forever. Here I go again. The purpose of this letter was to thank everyone. Geesh! I hope everyone is going to have a peaceful holiday season with good health. Please remember to check out the website for Leah’s Happy Hearts which is our non-profit corporation. The website is www.leahshappyhearts.org. For every $5.00 we will send you a free bracelet. Stay tuned for upcoming fundraisers. We are trying to organize a wine tasting along with some premier auction items. It will be fun and I’m looking forward to seeing everyone again. Take care. Karen Kylie and Angel Leah’s mommy forever and ever

November 24, 2006 I’m having one of those days again. Why do the tears keep coming more than ever now? I’m sick of crying and it is so darn tiring and exhausting having to disguise my feelings at work, parties, etc… That is why I am always so tired. I went shopping on this crazy Friday after Thanksgiving and I lasted only about 30 minutes. When I passed the Disney store and saw this big white stuffed character the pain was unbearable. You see, Leah and I would go into the Disney store every Wednesday after having lunch. I keep seeing things that I know she would love or dresses that I know she would look beautiful in and it hurts. But life goes on, I pass people in the mall and they have no clue how broken up inside I am and the truth of the matter is, some of these people might be just as hurt as me about something that happened in their life. I guess what I’m trying to say is that my world feels like it stopped and yet I see life going on as normal. I miss her so much and I don’t want anyone to ever stop talking about her. I need her to live on in my heart and I need others to not be afraid to talk about her. I wasn’t going to send out Christmas cards but a friend of ours created this beautiful angel picture of Leah so I will send that out as a postcard type of Christmas card. I want everyone to have her angel picture as that is what she truly was and always will be. I just hope she is watching over her sister and parents. I prayed really hard at the cemetery again for a sign and the next day while I was talking out loud about her the song “How Far is Heaven” came on. Maybe…..? I do believe once Leah’s Happy Hearts can make at least one child smile I will feel a warmth. We will be planning our first fundraising event after the first of the year and it will be a fun one. I’m hoping you all can make it as we try to raise money for the research of this horrible cancer, the forming of a parent support group for those that have children in the Pediatric Intensive Care unit at Mott’s Children’s hospital, and to host events for these ill children. Please remember to subscribe to the website so you don’t have to keep checking everyday to see if I updated. Speaking of updating, thanks to all of you who signed the guestbook letting me know you are still reading and encouraging me to continue on. Your words mean a lot to me; knowing you are there is comforting. We just finished decorating the outside of our house which I think is important for Kylie. It’s difficult for Phil and I to want to do much of anything but we have to keep some traditions for Kylie’s sake. I wonder if Leah can see the house? I wonder if she hears me? Since music is something that touches my soul, if any of you have any good songs that would help me to reflect on Leah and her life please send them to me. I use the music as a type of therapy for myself. I just added Afterglow by Inxs to my IPOD and I have to say if you haven’t heard “Children Don’t stop Dancing” by Creed you must listen to it. It is a great song to listen to for parents that have lost a child. Be thankful for your healthy children and for your own health. These children that battle this tumor are true heroes as they never gave up and remained in good spirits until the bitter end. It is still so unbelievable to me and the hurt is so much worse this holiday season. I hate this and nothing helps. Life seems too long right now for me. I will hang on and I thank you all for continuing to read my journal. Take good care. Karen Kylie and Angel Leah’s mommy forever

November 19, 2007 Good news for a change. Leah’s Happy Hearts is now officially a 501c3! We can now start planning our fundraisers and how we are going to use the money to make a difference in this sometimes horrible world. I still have some legal questions so if anyone knows of an attorney that works a lot with non-profits let me know. I don’t know how much longer I will journal. I expect I will soon write one long letter to Leah and make it my final entry as I concentrate on Leah’s Happy Hearts. OR, maybe I should keep updating until at least our first event. Time will tell. I don’t see that many guestbook entries so I’m wondering how many of you are still out there? Again I will say this time of year is difficult and being that we are staying in Michigan for Thanksgiving and Christmas it brings the reality more into focus. How is one expected to go on without one of their children? A child who you spent 5 1/2 years of your life with and brought so much joy to this household. A child who was so unselfish, happy, loving and beautiful. I shake my head all the time and say why? It is so difficult watching the toys being advertised for Christmas. I find myself walking through the toy stores saying, “Leah would have liked this”. I also walk through the aisles where the beautiful Christmas dresses are and I wonder what dress I would have bought for her. It seems like I am crying a lot more than usual. Everyday I cry and it is getting old. She is constantly in my thoughts and will forever be in my heart. I love you little Leah and I miss you so much. God I wish I could have saved her. I will never understand this world. A friend of mine sent me this and it really hit home so I thought I would share it and would help you to understand the loss of a child. "Real grief is not healed by time... If time does anything, it deepens our grief. The longer we live, the more fully we become aware of who she was for us, and the more intimately we experience what her love meant for us. Real, deep love is, as you know, very unobtrusive, seemingly easy and obvious, and so present that we take it for granted. Therefore, it is often only in retrospect- or better, in memory- that we fully realize its power and depth. Yes, indeed, love often makes itself visible in pain." -Henri Nouwen http://www.henrinouwen.org Please pray for Alicia and her family as the symptoms of her DIPG have worsened. Also for my father who is still recovering from his back injury. Lastly, please pray for us so that we will have strength for each other and that we will receive some signs from Leah that she is okay and can see us. Thanks for listening. Karen Kylie and Angel Leah’s mommy forever www.leahsjourney.com www.leahshappyhearts.org (for every $5.00 donation you will receive a Leah’s Happy Hearts bracelet in her favorite color)

November 13, 2006 Sorry it has been so long since I updated but between my Dad, work, and trying to start up my clothing business it has been crazy. My Dad had minor back surgery and is slowly recovering and I am now officially a Cabi consultant. I will begin my journey in January when I attend a fashion show and training. I can then start booking parties in February so I’m very excited for I love clothing and helping women find what looks great on them. We are dreading the holidays as you can imagine. Last year we were gone for both Thanksgiving and Christmas so this year to give Kylie some normalcy we will reluctantly stay home. Can’t run and hide forever and the pain goes with you no matter where you go anyway. New environments somehow help a bit or at least they keep things interesting. I have some really bad days and then some okay days. No matter what kind of day I call it the bottom line is that I’m thinking about that little girl Leah and what a void is now in our lives every minute. I think the only people that truly understand are those that have suffered a loss of a child. I do appreciate all the love and support we receive from friends and I want you to know that you have all helped more than you know. I know that many of you are so compassionate and caring and are trying your best to be understanding and watchful of our feelings and Kylie’s and I thank you. Please stick with us through this. It is a long long process to become a person that can cope with such a thing and there is no time limit that can be put on it. I’m still having a hard time dealing with it and many situations just stab at my heart. Not fair!!! There are a couple children out there right now that are not doing well with the same tumor that Leah had so I ask you to keep them in your prayers. When is there going to be a cure? There needs to be more research done. Kylie is doing okay and loves cheerleading, dance and gymnastics. She is an active one for sure but she gets very lonely at home. Since she attends a private school she doesn’t know any children that live close that are her age so it makes us feel sad. She needs to be surrounded by children for that is when she is happiest. We are still waiting for the IRS to approve our request for our corporation to become a non-profit. Long process and I don’t want to plan anything until we receive that status. I had the most beautiful Christmas cards made by placing Leah’s face on an angel. They are sooo beautiful so thank you Tammie for being so innovative and creating such a beautiful picture. It helps to think that Angel Leah is in that same type of heavenly place as shown in the picture with her little angel friend. I guess the only way to get through Christmas again is to keep in mind what it is really all about; the birth of Jesus. We are again attending the Glory of Christmas at Northridge Church which is the most beautiful representation of Jesus life and it is so professionally done. Keeping focus on the true meaning of Christmas and the promises that Jesus made to all of us is what keeps us going and behaving :) Take care and give thanks for your children. I would do anything, anything to hear Leah laugh again or hold her in my arms and hear her say Mommy. Until then, I will keep hanging on. Karen Kylie and Leah’s mommy forever www.leahshappyhearts.org

November 03, 2006 Boy it takes a lot of energy to be a grieving parent. I had a very disturbing dream which I won’t go into but woke up while I was yelling, “My daughter just died, we can’t take much more.” I couldn’t get back to sleep as my wheels in my head were turning so here I am. It’s strange what being a grieving parent does to you. I feel more compassionate about some things and less compassionate or maybe the word is tolerant about others. I’m more compassionate towards parents going through a rough time with their child like being in a wheelchair, having learning disabilities, anything that takes energy I feel for the parent. On the same hand I also look at them with their children no matter how disfigured they may be and envy them for they still have them here and their love chord is still connected. I’m less compassionate or tolerant for the complaints people have about the hassles we go through in life or the life cycle when it’s natural order. I realize grief is grief and the worst grief is your own but I’m just stating where I am at. I miss Leah every minute of every day and how do I cope? I like to record songs on my IPOD and cd that have to do with angels or heaven. Most of them are rock or alternative bands like Creed, The Coors, John Mayer, etc… Sometimes the song is just about how screwed up the world is and how we need it to change. I like to walk with my ipod singing these songs as I look up to the sky on a clear day. Other times I just listen in my car and for some reason mentally it helps quite a bit. Sure wish I was musically talented because then I might be able to write my own songs. I also take out the many books I have and read certain chapters from time to time reminding me that I will see her again. God promised he would prepare a home for us so I’m looking forward to the day I walk over the threshold. On another note we called the cemetery and asked if they would level Leah’s marker as I noticed it lowered on one side and seems to be getting worse. Kylie is doing cheer for basketball and loves it. I am grateful for her everyday. I am so lucky to have her and Phil and I count my blessings for them daily. I also was lucky to have the time I had with Leah. It was 5 1/2 wonderful years and the best years of our family life. We all miss her and we’re left with this big void but we will get by. If I haven’t gotten back with some of you about stuffing bracelets or just getting together period it is because things are hectic. Too busy for words. My Dad is back in the hospital (lots of stress there) and I’m trying to start this clothing business so I can do home parties and not lose the momentum with Leah’s Happy Hearts. Please remember to check out www.leahshappyhearts.org. For every $5.00 donation to Leah’s Happy Hearts we will give you a free bracelet. Please try to sign the guestbook; it really helps. I love you Leah and miss you forever and ever. Karen Kylie and Angel Leah’s mommy forever

October 27, 2006 Hi all, I’m tired so I’m going to make this short but I wanted to update you on Kylie. Kylie has syncope, more specifically grooming syncope. Syncope is genetic and is often hereditary and the neurologist is quite sure that this is what it is. If it happens again and I’m not touching her hair when it happens I am to call him back but other than that we will just keep an eye on her and make sure she is sitting down when someone blow dries her hair. It tends to happen more when other people are doing your hair and for some weird reason, rarely happens when doing your own hair. I appreciate Kylie so much and I really don’t know how I would get thru this without her. She is the reason I go on. Yes there are other reasons but she is the main reason to hang on and sometimes that is all you can do is “hang on.” I miss Leah so much and think of her every minute. I’m always thinking of the cute things she used to do and how thoughtful she was. I was just looking thru a little booklet on her bookshelf and it is a book that she wrote in. Under “Three Birthday Wishes” she wrote Leah, Katie, Emily G. So sweet. I remember two years ago when she was dressed like a cheerleader for Halloween and how much fun she had. God I miss her. I hope she knows just how much I miss her and how different life is without her. I hope she hears me when I talk to her picture and when I look up at the little stars asking her where heaven is? Where is it? Can she hear me? What’s it like? I can only live with the thought I will see her again. By the way, the tadpoles are still tadpoles and are taking forever to turn into frogs. Once they are frogs I’m not sure what I will do with them but I’ll cross that bridge when I come to it. Please remember to check out www.leahshappyhearts.org. We have not heard from the IRS yet but I’m keeping my fingers crossed that there will not be any further questions and they will approve our corporation. Thanks to those that dropped me a note either about the bracelets, helping or just to say how much you enjoy reading my updates. I value all of the friendships I have gained thru this horrendous journey. Please try to sign the guestbook; it really helps. Enjoy your weekend and your families. I love you Leah. Karen Kylie and Leah’s mommy forever

October 20, 2006 Well life has been hectic!!!! I did take Kylie to the doctor and now he wants her to see a neurologist. It very well could have been a fainting spell she had but he wants to rule out a seizure. Always something!!! I also had them do blood work to see if her sugar was okay. Please pray for Kylie that it was only a fainting spell and that she will be okay. I also started Kylie back with a therapist so that she has someone to talk to regarding her feelings of grief over Leah. Now it seems like one of us has some kind of appointment almost everyday so it doesn’t give me time for me. Kylie does cheerleading, dance, gymnastics and now the therapist. I thank God for her everyday and I just love her to pieces. I prayed to Leah at the cemetery the other day, I mean I prayed really hard and asked for her to come to me in a dream. Well, that night I dreamed about her. She looked like she did before the steroids and I don’t remember much of it but I do remember her running back and forth smiling joyfully with her little curls flying up as she ran. I had a good feeling when I woke up but I don’t remember getting to hug her or kiss her and I want to feel that again so badly. I miss her so much. My Dad is in the hospital with spinal stenosis and that of course adds to my life being hectic. I won’t go into it here. Remember to let me know if you would like to purchase a bracelet that will benefit Leah’s Happy Hearts. That’s all for now because I am running out of time. Take care all and keep us in your prayers. No we haven’t moved on nor will we ever “move on”. We are learning to cope with baby steps and the pain will never go away and there is no pain like it. Trust me on that one! Hug your loved ones and thank God for the people in your life because the rest of it is just “stuff.” Karen Kylie and Angel Leah’s mommy forever

October 13, 2006 Well many of you have asked me to post an update on Kylie so here I am. I am taking last Sunday with Kylie as simply that she fainted. I really hope that is what it was and I did call the doctor on Monday. Being that she hadn’t eaten in 3 1/2 hours and is skinny to begin with, plus the fact that we got back from Arizona Saturday morning and her skin is so dry, hence dehydrated, the doctors office along with I believe it was a fainting spell. I was blow drying her hair so she had been standing for 5 minutes with heat blowing on her which may have contributed to it. Of course if it happens again I will take it more seriously but I feel good that I called her doctors office and talked to the nurse for guidance. I just came back from the cemetery and yes they turned the dirt and perhaps added some to Leah’s site but now we have to grow grass again on half of it. After it was looking so good. Grrrrrr!!! I miss her so much I can’t stand it. I really have changed the way I think and live for the better. I am a new person now and quite frankly I like this new person. Going thru this heart-wrenching journey has helped me to see people and things in a whole new light. I feel so much wiser than before and I feel like I am now on a straight path rather than a path that had no clue as to where to turn next. I like to think that I appreciated my children but boy do I ever appreciate them now. I wish I could have learned this lesson from someone else but who does deserve this (Leah sure didn’t). So many people have told me how much they have changed since reading Leah’s journey and I’m grateful for that but I sure wish it was me learning from someone else’s story. Thanks for letting me know that it helps though. I’ve learned that no matter how many luxuries you surround yourself with, the pain is still there. No matter where you travel, the pain is still there. I’m no longer afraid to die but afraid for Kylie to have any more tragedy in her life so I hope I live a long time for her and for Phil. I am going to put all of my energy into that little girl and try to make her life as normal and loving as possible. We have gotten much closer the last couple of weeks and it is a great feeling. I’m going to take the liberty of saying the bracelets are for sale for $5.00 a piece. I will stuff them as the need arises. You can send a check to the PO box listed on the www.leahshappyhearts.org website and make it out to Leah’s Happy Hearts. I would then send the bracelets to you. For those that want a receipt, please wait until the IRS comes back with an approval for non-profit status. I’m waiting patiently for that. They are purple and there is writing on both sides. One side says Leah’s Happy Hearts with two pictures of a happy heart that she drew (we added the halo), and the other side reads, “is your heart happy” only the heart is a symbol of a heart. Very cute and the money will be put into the Leah’s Happy Hearts fund. I will let you know as soon as I hear back from the IRS. They did send a letter saying they received it and are currently reviewing it. Take care everyone and thanks for stopping in. Karen Kylie and Angel Leah’s mommy forever

October 8, 2006 Sorry it has been so long since I updated but we were in Arizona. Arizona was great and so was the weather. We went to Sedona and took a jeep tour where we learned about the vortex sites and we also did a little off-roading. Beautiful area with the red rock and I really wish Leah would have physically been there with us. It was so difficult while at the pool seeing two sisters together and then feeling isolated. I was feeling sorry for myself and Phil in addition to Kylie and then it hit me that there are probably a lot of others vacationing that were sad about something. Maybe they are people who could not have children and then they have to be at a pool with a bunch of happy families, maybe they are people in bad marriages looking at other couples that seem to be so happy and then they start feeling sad, maybe they are single people wishing they could find someone to share their vacations with. Maybe even people in bad marriages wishing they were single? I guess my point is that although I sometimes feel so alone and that the whole world has good luck except for us, there are others that may be feeling the same. Bottom line, it is always a reminder of how unfair life is when we have to watch two sisters around Kylie and Leah’s ages play together. We were able to experience a thunderstorm while we were there and I’ve never heard such loud awesome rumbles. They seemed to go on forever and it was like they were echoing off the mountains – very cool!!! I also went to see this wonderful woman named Ann who gave talked with me for one hour. She is an author, angel communicator and lecturer (www.visionsofheaven.com). I left feeling a little bit more peace and every little bit helps. Thanks Ann. All in all, a good trip even though we all missed Leah. Well what a day it has been. Horrible! First I find out that a big truck that one of the cemetery workers drives drove right over Leah’s site and there is a huge indentation from the tire mark. It is sunken in around 3 inches and the grass that we took the time to plant twice this past summer, and water everyday is ruined. On top of that for some reason her site is the only one that has these holes that these beetle bugs are making. I look around and everyone else’s site looks fine and here this precious little 5-year old that has only been gone 1 year has a horrible looking grave-site which looked great last week. I’m so mad and angry!!!!!!!!!!!!!! How dare them!!! It literally makes me sick to my stomach. Let this be a lesson people to find a cemetery where they do NOT drive on the grass; the kind that allows the above ground granite tombstones would probably be the way to go if you are not choosing the wall. Then, Kylie fainted today and scared the living hell out of me. I was blow-drying her hair just before lunch and she went forward, I grabbed her around the waist and she went limp like a rag doll as I started screaming for Phil. Of course I was in a state of panic as I didn’t know if she was having a seizure, her heart stopped, fainted, or what?? I think it was fainting due to the fact she was due to eat lunch and only had a small bowl of cereal from breakfast but I will call the doctor in the morning to be sure. What else?!!! We have a couple other little potential problems going on in our lives in addition to all this but I don’t even want to get into that. God must think I’m a really strong woman because I have no other explanation. Back to work tomorrow, (reality) and life must go on. I have a very busy October with something planned almost everyday. I’m also going to be starting a little business on the side that I will tell you more about soon. If you like nice clothing and don’t mind hosting parties, you may be interested in what I will be doing. I’m been blabbing long enough so I will close. Hug your loved ones and tell them how much they mean to you because everything else is not important. To be rich is to have many trusting friends and I feel rich. Thank you all and remember that you can subscribe to this website so you know when there are updates. Also the archived guestbook is out there on Leah’s main page. (Jennifer Corbett, and Julie DeRoeck, please send me your email address, thanks) Blessings, Karen Kylie and Angel Leah’s mommy forever

September 29, 2006 Hard day it is!! I was just doing some things in Leah’s room and I lost it. I screamed how much I miss her and let out a good cry. I’ve been lying in bed trying to sleep and I can’t so I’m turning to my journal. I’m laying here thinking why did Leah want to go hug her teachers 3 days before she went into a coma. It’s really got me wondering. She was so insistent and kept saying, “I want to go hug my teachers.” Phil took her and I’m so grateful for that. On some level did she know what was going to happen? Can you hear me now? ‘Blessed are those that mourn, for theirs is the kingdom on heaven’. Seems like such a long wait to me….I never thought I’d be in a rush to die but in a way I am. I’m torn between wanting to be here on earth with Phil and Kylie and wanting to be with Leah. I think this is something that Mom’s that have lost a child struggle with at one point in their life or another. Will this feeling ever pass? I listened to John Edwards’s wife on Oprah and she lost her son at 16. She says that she now parents her child’s memory. Parenting your child’s memory, I guess that is what I do when cleaning up her cemetery site and by selling bracelets. She will never leave my heart and the piece of my heart that went with her will never come back. It is with her forever. How do I go on and enjoy a vacation without you Leah? How will we enjoy Christmas without you running Christmas morning to see what Santa brought and to see if he ate his cookies and drank his milk. That joy in our life and your life was cut short; we were robbed, cheated, and it’s just not fair. You of all people, an angel here on earth, not fair and I’m still ticked off. 14 months almost after you died and the pain is brutal, gut wrenching, heart piercing pain. Pain like I’ve never felt before or even have come close to feeling. October is a busy month and before we know it the holidays will be here. We will just try to make the best of it and remember the true meaning of Christmas. I may be retiring because I work at Ford so time will tell. Offers will not be handed out until mid-December so we will see. When one door closes another opens they say. Kylie is going to start back with a counselor that she saw when Leah was first diagnosed. She really doesn’t want to start with someone new so I’m just happy she has agreed to go. Well I hope everyone has a safe week and remember to pray for those that have lost a child and for those that have children battling a life-threatening illness. We are off to our little trip so wish us peace. I love you Leah and Kylie! Blessings, Karen Kylie and Angel Leah’s mommy forever and ever

September 20, 2006 Hello, Sorry so long since I updated. I went to a grief support group last Monday that was just okay. I also called a therapist for some individual sessions for both Kylie and I so I suppose I have made some progress. My bracelets are in but the bags we were going to use do not look good so I am on the search for some cute little bags that are not too expensive. Once we find them I will have a bracelet stuffing party and we can at least start selling those. Time ticks away without my Leah and it is a new normal I don’t think I will ever get used to. It is so incredibly difficult and I have to say a minute doesn’t go by where I don’t think of her. If only I could hug her again, kiss her again, hear her laugh again or say I love you again. It’s funny how as angry as I am, and thru all this tragedy it has brought me closer to God. I now believe more than I ever have and find myself yearning to learn more about the bible everyday. I think God needed to draw me towards him so it took something this drastic to achieve that. I miss her so darn much but I know she is waiting for me on the other side. Our lives can be turned around in a matter of seconds. I’m sure there are some that think they have it all with their material goods but in the end when your life is turned upside down, who do you turn to then. The only answer is God. That is all we really have because everything else is on loan including our children. We all belong to him and he can take it all back with the blink of any eye. Okay enough of my preaching. Sometimes I get on these topics and the thoughts just start flying. :-) We will be heading to Arizona soon for some time away as a family. Our hearts have a big hole in them but we will do our best to try to find some fun moments within each day. Well, I’m heading up to the cemetery so please take the time to read the below thoughts on grief. This was found on another parent of an angel’s website so I thought I would post it as well as it hit home. It is exactly how I feel and I think it is a good reminder for us all on how to help others going thru this same living hell. Great words!! Thanks for listening and please sign the new guestbook. I still look forward to those words of encouragement. 1. Grief is not really a process that one goes through a step at a time. Grieving is a roller coaster ride and it is circular. The first couple of years, we are numb. When the numbness goes away, we are shocked to see that the world has gone on without our child. When we come out of this numbness we are new people, slowly beginning to adjust to what has become our “new normal.” 2. We are parents without the right number of children. Adjusting to this could take years. Some of the emotions that grieving parents feel are fear, anger, guilt, sorrow, loss of future, isolation, abandonment—these are not steps that we work through but feelings that come back over and over again with different intensity and in different forms. There really is no “closure.” 3. When a parent loses a child, his heart is literally broken. A huge hole is left. This hole will never heal — only the jagged edges around the hole may heal with time. Our grief, not always in the same form and maybe not as intense, will be with us the rest of our lives. 4. It does not matter how our child died, whether he was 1 week old or 60 years old, or if we do or do not have surviving children. The loss of a child is an act against nature. The right order is that a parent should die first. 5. It takes a long time for most grieving parents to accept the fact that their child is dead. We can only allow the truth in a little at a time. This may take years. 6. Bereaved parents are no stronger than anyone else. We survive for many reasons. We may have other children; we need to be there for our spouse and other family members; we may feel that if we die, our child’s memory will die with us; but mostly we survive because we see no other choice. We loved our children with all our hearts, the same way any parent loves a child. It is not because we loved our child less that we survive. 7. What you say is not important—the important thing is to say something. Ignoring a bereaved parent is only adding to her burden. Just ask “How are you doing?” And, when a bereaved parent returns to the workplace, make sure that you stop by once in a while just to say “hello.” Remember, our “new life” is just in the infancy stage and it is a very difficult road ahead. Our grief is forever. Yes, I chose to underline that one! 8. Call the bereaved parent just to let her know you are thinking about her. Don’t be insulted if the person does not call you. For years after a child dies, there are many days when the parent just does not have the energy to pick up the phone. (so true!) Grieving is not only difficult but zaps most of a person’s energy for a long period of time. Letters are helpful also. Most grieving parents appreciate those letters more than you can imagine. 9. Some people are afraid to mention our child’s name because they will “remind” us of our sorrow or because we might cry. You will not remind us because we never forget ; we are living it every minute of every day. And don’t worry if we cry; we will stop. You might want to cry a bit with us. We want to talk about our child. Mention his name. One of our biggest fears is that he will be forgotten and one of our biggest joys is to hear his name. 10. Everyone grieves differently. There is very little a bereaved parent does or feels that is not within the normal range. We seldom ask for help but if you listen and watch carefully, we will give out signals that will show what we need. 11. Never think that a grieving parent is holding onto his grief. We do the best we can and we move along as fast as we can but it is hard work—probably the hardest thing we will ever do. 12. Remember there will always be certain times of the year that will trigger immense sadness and overwhelming grief. Birthdays, anniversaries of the death, holidays, Mother's Days and Father's Days, weddings and funerals are just some. We can never prepare ourselves for these days. Sometimes they end up being easier than we thought they would be and sometimes harder. A simple “I am thinking of you and I know this day must be hard” goes a long way with bereaved parents. Blessings, Kylie and Angel Leah’s mommy forever, Karen

September 10, 2006 It’s Sunday and Kylie just had a full day of activities yesterday. She did her gymnastics for 1.5 hours, then on to cheerleading then on to a sleepover. Today she is going to a birthday party. And so it begins. The beginning of the school year and time is precious. I’m feeling blue today missing Leah. You see kids starting school and I can’t help but wonder how Leah would be feeling in 1st grade. Would she like her new teacher? What kind of lunchbox would she have picked out? Who would her friends be? Wouldn’t she be excited to be in the same school as her big sister!! Life is not fair, but who ever said it was. 9/11 is tomorrow and how unfair that was too. It downright stinks most of the time so why are we here? Were we put here to learn lessons? Did we all pick what lessons we want to learn; I sure don’t know why I would have picked this one!!! All these questions that we will not have the answers to until we die. The only option we have is to keep believing and treating others as we would like to be treated. I can’t wait till we are out of this world which is stuck in time and into heaven where there is no such thing as time. A minute in heaven is like a 1,000 years on earth they say. (or is it 100) I forgot what book that Bible verse is in but in essence that is what it is saying. We are preparing for a trip to Arizona where I hear you feel about as close to your loved ones that have passed on to the other side as you will ever feel. We are staying in Scottsdale but I’m hoping to make a trip to Sedona which I hear is a very spiritual place. If anyone has any suggestions as to where to go in Sedona, please let us know. We purchased this trip at an auction and we got a very good deal on it. There were so many people that helped us at our auctions so I feel great when I can attend any auction that will benefit someone or someplace. Of course I always try to buy something! We are hanging in there but it sure is difficult. I wish we could run away again for the holidays but money will not allow for that plus I don’t think our families would be too pleased if we left the state again. Painful as it will be, we will stay here. Ouch – it hurts to even think about waking up Christmas morning without Leah and watching Kylie open presents under the tree without Leah. What can we do to honor Leah? I’m thinking that instead of people sending Christmas cards, please send me a note with your favorite memory of Leah written on it. Of course you can put that note in a Christmas card if you wish. If you never met her, perhaps you could write about what you remember most about her when reading my journals. What kind of child did you feel you were able to get to know by reading the updates? One Mom sent me pictures she found of Leah that she knew I did not have copies of which I really appreciated. Thank you Donna! If you think it should be easier this year I have news for you; it is worse. Yes worse! I am realizing that she is not coming back and there is not a damn thing I can do about it. I’m so angry that this tumor exists and that there is nothing that helps these kids. It is just not right. Leukemia, breast cancer, juvenile diabetes, prostate cancer all received funding for cures and now there is a high success rate of survival. Pediatric brain tumors are the #1 killer of children and I never hear of funding for them. Slowly but surely I am hoping the parents of these children can change that. The 1023 paperwork is done and I’m just going to have a friend review my typing and I will send it on in. That was not fun. The bracelets are in and today we will start bagging them and placing our note card on them. Well folks, that is all for today. Take care and enjoy your family and/or loved ones. Please continue to pray for Kylie and her parents so that we can maintain the strength to go on without bitterness. Please pray for all families having to endure the pain of their little one being diagnosed with this tumor and for those families that have lost a child. Karen Kylie and Angel Leah’s mommy forever

September 1, 2006 It’s fall and school has started for Kylie. She is excited and I am glad that she will be kept busy everyday. She is in cheerleading right now for a neighboring church and will cheer soon for her own school when basketball season starts. She is also signed up for gymnastics and dance and will join volleyball when that starts. Ms. Peggy, I can’t wait for her to have lessons with you again. This is all good. This poor girl is so sensitive and sad sometimes so I thank all of you that continue to keep her in your prayers and to be sensitive to her very fragile feelings. Makes me want to cry so I will change subjects. Going to school with Kylie brought a bunch of mixed feelings to the surface. Happy to see Kylie with friends and glad to see her smiling as she greets friends she hasn’t seen in a while. But then there are those feelings of, “wow, Leah would be going into first grade right now and would be in the same school all day with her sister.” Ouch, it hurts. The pain is so deep I can’t even describe it. Unless you have lost a child, I don’t think you will ever really know how deep it is. It rips at me all the time and again I feel when I go out of the house I am wearing a mask. Yes, that person you see outside of my house is not how I really feel. But life goes on and Kylie needs to have a good life….she deserves it for Pete’s sake so I hang on. When you are going thru hell, keep going. I’m meeting a woman tomorrow that should have our 501c3 done in about 2 weeks. One week for her to fill out the booklet, and 1 week for me to write a narrative. When I say done, I mean ready to send into the IRS and wait for an approval. Our bracelets are in and we will be busy packaging them and putting stickers on them getting them ready to sell. I’m reading a book by John Edwards called “One last time” and so far it has been really enjoyable easy reading. John is a Catholic and he talks about how he questioned everything he used to hear about medium’s and he was very skeptical. This is just how I feel, “how can they know things?” Anyway it is giving me a wee bit of comfort for now and that is what is important. I am constantly searching for that wee bit of comfort. Sometimes I turn to shopping or food and when I’m done I see that I feel just as miserable as I did before only now I feel guilty for the money I spent or the calories I gained. AAGGHHH. Please continue to pray for us to move through the holidays with grace and dignity hard as it may be. Please pray for the children that are battling this tumor right now and are not doing so well such as Matthew, Kate, and Chase. May these parents be blessed with a wonderful support system like we had so they can feel good about all of the decisions they make. May they be surrounded by people that don’t make them feel guilty for how they fed them, or what medical decisions they make (that was the worst and there are lots of so called know-it-alls out there). God bless, enjoy every minute and enjoy your kids. Be thankful for what you have and not for what you don’t have. Oh, I just saw that the pictures from the DIPG conference are on the website titled www.JTHF.org. I'm sure more will be coming in but this will give you a good picture of all these wonderful people we've met.  Karen Kylie and Angel Leah’s mommy forever and ever

August 18, 2006 Hi everyone, Well we’re back from Vegas where we attended the DIPG conference. It was wonderful! There were around 30 parents who all lost a child due to this monster of a tumor. Many of us just lost our child within the last couple of years. It was great to meet these parents and it felt like I’ve known them all of my lives. It was a very safe, warm place to share feelings and we laughed and cried at different times of each day. Sunday was a meet and greet and then Monday morning started at with a slide show. Please go to www.jthf.org and click on DIPG conference on the right side. You can then read a summary of the conference and at the bottom of the summary you will see a slideshow you can click on. Get your Kleenex, turn the volume up on the computer and you can see all of the beautiful angels. All of these children’s parents were in attendance. Thank you Carla and Toni for arranging this worthwhile event. I can’t wait to meet up with you all again and I’m hoping we can do this every year. I’m sure we would all be willing to pitch in money towards this event and maybe have even more speakers, mediums, etc. I love each and every one of you and please remember, we will get thru this hand in hand. There was a great speaker at the conference named Tom Zuba who shared his story of losing 2 children and his wife at separate times within a span of about 6 years. He was so inspiring and encouraging that we someday will too see a light at the end of the tunnel. We ALL related to what he was saying as he was so right on with everything. I especially liked the part when he said “how do you like it when someone says, how are you doing? Do you mean now, or how about now, how about now?” Our emotions change every minute and I’m not sure how many people realize that if any. Do you actually think we are ok? We are miserable, ripped up, ticked off, and we will never ever be the same person you knew before. I hope you will grow to like the new me but the old me is gone forever. That person died along with Leah and I’m trying to get to know the new me. Well I’m missing Leah more than ever and can’t stand the finality of it all. Kylie is missing her sister so much too and it just breaks me up inside to have to live like this. I’m actually dreading Christmas and Thanksgiving as we don’t have any different plans this year so we will be back to the same old traditional holiday plan which is hurting me to even think about it. How can anyone expect us to enjoy ourselves? But we continue on wearing our mask and being in disguise every day. I love Kylie so much and she deserves to have what she has come to know as a normal life so we will do our best to give it to her. Things at work are getting scary and I’m not sure what the future holds there. In some ways I want to leave as I am so burnt out and exhausted from having to try to be the same person I was before. We do need enough money to give Kylie a nice life so I’m really torn on my feelings about it all. The economy in Michigan is not good so what do you do? Our tadpoles are continuing to grow and I keep the little tank in Leah’s room. Ah, Leah’s room. I love going in there and lying on the bed thinking of all of the happy times. I always end up crying but I think it is healing to continue to be with my grief at certain times. I drove by the pre-school Leah went to and the statue we bought them last year is now surrounded by flowers and landscaping blocks and stands up a little high on the dirt. It looks beautiful and I want to say thank you to Marilyn? for making it look so beautiful. Thank you, thank you, thank you. The statue reminds me so much of Leah and since I live so close to the school I drive by often to look at it. I think I’ve talked enough today so please keep us in your prayers for it is not any easier a year later only more final. There is no such thing as “moving on” and we will do all we can to “move with” the grief and pain. Take care, hug your loved ones and enjoy every minute. God bless us all and I can’t wait until we are all holding our angels in our arms again. Day by Day, Karen Kylie and Angel Leah’s mommy forever

August 9, 2006 Hi everyone. Well we are looking forward to attending a small type of conference to meet other parents that have angels in heaven due to this horrible tumor called DIPG. It will be good to talk to people that really really understand. Don’t get me wrong, many of you have been very compassionate and understand very well. I said it before and I’ll say it again. Losing a child has to be the worst pain in this world. We are brought up to know that when we get old our parts start to ripen, or should I say rot :0 and then we die eventually. To lose a child is not the natural order and it is the worst hole in your heart you can have. The pain is getting worse. I was numb the first 6 months or so and now it really feels that it is getting harder. I am not looking for pity or sympathy but I want others to know that perhaps are just starting this journey that it gets worse. I am told that the 2nd year IS the worse and eventually (it’s different for everyone) it will plateau and stop escalating. God, I miss her so much. I went to the Angel Lady and was very disappointed. It was only a short visit and she really didn’t tell my anything specific that I knew was true. There were a couple things such as “she goes by Elisabeth, she likes cats and likes purple.” Those statements are true and Elisabeth is her middle name; she never really did like the name Leah. (I’m so sorry pumpkin) I guess I will just have to wait until we meet in heaven and perhaps I will know all the answers then. I KNOW in my heart that there is something much greater than this life here on earth. Our minds cannot comprehend what is above us just as an ant can’t comprehend our world. Our journey here is very short and I really do believe in eternity for those that are honest, loving, and unselfish and believe in God. Ok enough of that. Kylie is getting excited for school and wants to cheerlead, play basketball, and volleyball, in addition to dance and/or gymnastics. I need to start her in counseling again as I see that she needs to let some of her feelings out. I still always feel bad for her. My cousin has our 501c3 paperwork and is going to fill out our paperwork as he is a CPA. We really shouldn’t do much with our corporation until we have that status established. The bracelets are on order so we should have them within the next week or so. There will be small, medium and large sizes. More to come on that. Well, I’m going to get ready for bed so take care everyone. Thanks for continuing to follow my journal and please keep all the families who have lost their child to this tumor and to those still battling this monster in your thoughts and prayers. Thanks to all who remembered Leah’s anniversary and continue to walk hand in hand with us. I LOVE YOU so much Leah and miss you terribly. I would give anything to hold you, and see you again and to know if you are thinking of me. Love, Karen Kylie and Leah’s mommy forever

August 1, 2006 Well as I sit here drinking my second glass of wine, I’m thinking about where we were 1 year ago today. 1 year ago is the day our precious Leah’s tumor started to bleed and she went into the coma. 1 year ago is the day we were supposed to have lunch with the Livonia firemen. 1 year ago today is the day our life changed forever and was shattered, broken, and never to be whole again. Yes, the pain is worse. The numbness is beginning to fade and the realization that she is not coming back plants itself deeper into my soul. It hurts so badly. I feel so lucky to have been Leah’s Mommy, I also feel so cheated and robbed. I went to the cemetery today and talked to Leah and told her how I felt again. I read her a book titled “Tell me about when I was a baby”. I really hope she could hear me and see me. I hope she feels the love I have for her and the pain we are enduring going on each day without her. I hope she knows we will see each other again. Tomorrow I am going to the “Angel Lady” which is the same person I went to last October that told me all kinds of amazing truths about Leah and our life. She is worth going to see for anyone that has ever lost a loved one. I’m excited and scared to see her all at the same time. I asked Leah today to talk to me thru her. I am wondering if my Mother will come thru as well. I’m sorry if I am offending anyone by doing something like this but she is a very spiritual woman and whatever makes me feel the least bit better these days I tend to go with. Thanks Marion for going with me and for taking care of Kylie for me. You are another one of those angels’s sent to help us. Thursday both Phil and I took off work for it is the anniversary of the day our own beautiful Angel Leah flew back into Jesus arms. We are going to launch some balloons from the cemetery; purple ones of course and we will have Kylie decorate one. I would like to just sit on the blanket with Phil and stare up at the sky talking about Leah. I think I need this time to be with my grief. I sometimes feel I run from it so it is somewhat healing to sit and think about everything and just deal with it sitting in my grief. Thanks to all of my angel friends who remembered this week would be a tough one for us and for continuing to be there with your hugs, support, laughter and of course wine. I really enjoyed tubing the other day as I couldn’t help but smile the whole time. There is no way you can think about anything serious when you are holding on for dear life. Very fun! A 48 year-old on a tube must be a site to see; luckily I don’t have to watch myself. I understand I woke up anyone that may have been sleeping though by my screams. I’m not sure if I was scared or just having a little bit of fun. I recently heard of another little girl that just became an angel due to the same tumor that took my precious little girls life. Her name is Naomi and her website is www.caringbridge.org/visit/naomir. She is a beautiful little girl like Leah and I’m sure they are both playing together now. I’m looking forward to meeting all of you parents out there that are going thru this same journey and carrying the same cross. I know we will be meeting soon and I can’t wait to be around others that totally understand and will be able to share their stories. I’m hoping to create some lasting friendships. Well that is all for now. I am going to put on my p.j.’ s and watch a bit of T.V. Take care and hug your children. Live every minute like it is your last and treat others as if it is your last day here on this earth. Life is too short to hold grudges or be resentful. Enjoy life, embrace it, and learn to know God and everything will fall into place. Please keep us in your prayers for it is not getting easier. I miss holding my Leah and feeling and seeing her happy heart. I love you Leah!! Mommy

July 17, 2006 Hi all, I attended “The Compassionate Friends” conference at the Hyatt in Dearborn this past weekend. There were some very informative sessions and it helped reiterate some things that I hear in my heart everyday. Also, the author of Hello from Heaven was there and I attended one of his sessions titled, “After Death Communications.” Very interesting and I have to say I smiled about my frog and grasshopper stories and I know that was Leah trying to tell me she was ok. One very important line us bereaved parents need to remember is “don’t should on yourself.” I know it sounds funny but how many times do we say, I should have done this, I should have done that, wish I would have done this more times. I do this a lot and I know I need to stop. Bereaved parents should never have to apologize for anything. One day we may talk your ear off, the next day we simply don’t want to talk about this horrible journey, some days we are more sensitive than others, some days we are angry at God and the world. It is all very normal and we need to give ourselves permission to do whatever we have to do to get thru this. Step by step, baby steps. The Walk to Remember was Sunday morning and they released 500 butterflies. It was a beautiful site to see as the large orange monarch butterflies slowly flew to the sky and landed on many of the people there. Our good friends made us t-shirts with Leah’s picture on them with the words, “Leah James, Forever in our Hearts”. Thanks to Anne, Megan, Bradley, Sue, Olivia, Kelly, Ashlyn, and Kody, and also thanks to Tom, Pat, Carly and Kelly. All of our wonderful friends are always making sure “we never have to walk alone” in more ways than one. Your presence at the early morning walk was very comforting and much appreciated. Life goes on and the anniversary date is coming closer. I am worrying about what to do with myself that day as we are both taking a vacation day. God, I miss her so. It hurts so badly and I wonder how in the world I am going to go on with these feelings. That is when I tell myself, “baby steps, baby steps.” I am looking forward to the days when I can work at Give Kids the World Village daily; in some ways I am wishing my life away. The summer is going by fast and I think it is because the days are so painful I’m also looking forward to the next day when maybe I could feel a little better…..so far, doesn’t happen. Well, thanks to all who continue to walk with me on this journey. Leah’s Happy Hearts – a bit of a setback as the person that was supposed to have started our paper work for the 501c3 two months ago never even started. We now have the paperwork ourselves and are going to need some help. Leah, I miss you so much and love you so much. Karen Kylie and Leah’s mommy forever

July 4, 2006 Hi all, I want to remind everyone about the Walk to Remember at the Hyatt Regency Hotel in Dearborn on July 16. You can register for the 2-mile walk on July 16th between 7 a.m. and 8:00 a.m. and there will also be a butterfly release at that time. The walk will be from 8:00 a.m. – 9:00 a.m. around the Hyatt Regency in Dearborn. The fee for the walk is $20.00 and is tax deductible. You will receive a t-shirt and a bib where you can write the name of the child you are walking for. Of course I will be walking for my beautiful Leah James. You can get more information about this event at http://www.compassionatefriends.org/. Hope to see you there! We are waiting for our butterflies to form and we just received our tadpoles last week. Both the butterflies and the tadpoles are in Leah’s room waiting to form beautiful creatures in memory of Leah. The pain is still unbearable at times and it seems to come in waves. Sometimes big waves and sometimes small but pain is involved with each one. We went to Irish Hills for the 4th of July to some friend’s house and it was so difficult to be there without Leah for that is where we spent last 4th of July only it was with her. Why? I continue to ask myself Why? Kylie attends a summer camp 4 days a week and I was told she was crying last week because she missed her sister. She was thinking about going to the lake without her and this is what caused her to cry. I feel so bad for her. Thank you to all of her friends who continue to be there for her. Guess what? While I was writing this update a butterfly just emerged. It is now hanging vertically waiting for its wings to harden and get ready to fly. Very cool. Thanks for listening and following the updates. Leah, I miss you baby so much and I will always love you, until eternity and thereafter. You are always in my heart, soul, and mind. Karen Kylie and Leah’s mommy forever Give your burdens to the Lord, and he will take care of you. Psalm 55:22 Death leaves a heartache no one can heal, love leaves a memory no one can steal. An Irish headstone

June 24, 2006 Hi everyone, I’m still here feeling the same. I’m not sure if I should keep journaling as I feel like I’m saying the same thing over and over again since my feelings never change and never will. I’m still missing Leah like crazy; we are all missing Leah like crazy. After my Mom’s funeral as we were leaving the cemetery Kylie started to cry and said, “I miss Grandma and Leah.” It made me so sad not only for me but for her. She lost her best friend and sister. What a lesson to learn at such a young age. Life must go on; the alternative is not a good thing so we must keep chugging along. Kylie is currently taking care of caterpillars that will turn into painted lady butterflies. We will let them go at the cemetery once they are ready to be released. This is something I’ve always wanted to do so I hope they all live. Right now they are doing well and moving to the top of the cups where they will turn into beautiful iridescent chrysalids. 7-10 days later they will turn into butterflies. I also have frogs on order and when we get them I will let you know. I will release them near the pond in the cemetery which is close to Leah’s site. We have decided not to sell our house this year and took the sign down last week. The economy is just too bad right now and I’m not going to give it away. Yes, we had sold it contingent on us finding another house that would meet an inspection. Well we found a beautiful home but it turned out the radon levels were too high for my comfort and we backed out. So here we are in our little ranch for at least another year. I had mixed feelings about it anyway. Right now I can walk to the cemetery which is great and I have a couple very good friends in the sub that would be hard to leave as neighbors. Whatever will be will be. (sounds like Doris Day) Kylie’s birthday came and went and she had a good time at a bouncy place. They have various moonwalks and slides that the kids get to play on for over an hour. I couldn’t help but think how much fun Leah would have had with her sister and her friends. It still hurts to see other children her age; why did Leah have to get the tumor. Why, Why, Why? We won’t know until we get to the place called heaven. Where is it? Can she hear me? Can she see me? I always wonder about those things and it drives me crazy. The only hope we have in this world is to “believe”. God is good and despite all of the misery and sad life we have had lately, I find my faith becoming even stronger. There are so many bible verses that tell us we will be rewarded if we believe and follow Christ. I want to be with my Leah for all of eternity so I will continue to grow in faith and in knowing the Lord. There is so much selfishness, crime, sickness and greed in this world and it becomes so disgusting which makes this journey even more difficult. I must go on for Kylie and Phil’s sake and try to make the best of each minute of every day. Hug your loved ones and remember that to be rich is to be surrounded with love, for people with loving hearts are the true diamonds of the world. Thanks again to everyone for continuing to walk this journey along with me and for listening to me ramble on. I always mean to just write a small paragraph and it ends up being several paragraphs. Please continue to sign the guestbook so I know you are still there. My support is all of you in addition to an online support group so please send me a note. I love reading the guestbook. If you haven’t subscribed to the website please do so by clicking the link on the bottom of Leah’s page. That way you will be notified every time I update and I want everyone to know when you can start reading about fundraisers for “Leah’s Happy Hearts.” Take care and stay healthy. Karen Kylie and Leah’s mommy forever

Hi all, We are still breathing but summer is sad. What am I saying, every season is sad, but summer is when children are outside playing everyday. Leah should be with them. Leah should be with her sister at day camps, swimming at the club, and playing everyday with her friends. Not fair we keep saying. As we all know we have no choice but to go on. We are working on the Leah’s Happy Hearts Corporation and hope to have an event in the fall as well as having merchandise for sale. We are trying to do everything we can to go on but the hurt remains. The guilt comes in and out of your head like lightening bolts. I know we don’t have anything to really feel guilty about but you have those thoughts of maybe it was this, maybe it was that, etc….I try to shoo them out of my head but they just keep zipping in and out. The beautiful paintings and pictures of Leah that I have give me comfort. I stare at them each time I walk by and I have a small house so that is often. I still go to the cemetery every other day and talk to my angel. Life goes on. Yes, we hurt all the time but life must go on. I came across this story that was on another parent’s website (Ryan C.) and I hope they don’t mind that I copied it over to here. I changed a few words so that it was about a daughter but I thought the words were great and I feel it would be good for everyone to read. Karen Grover, wherever you are, I hope you don’t mind that I am using your story but making it pertain to us. Many of you have been very comforting and I thank you for your support, prayers, and friendships. Not everyone gets it and I feel it is telling stories such as this that will give everyone a better understanding in how they can help their friend or family member. Take care everyone and stay healthy for that is the most important thing; health and love is what makes us rich. Please read "The Club" by Karen Grover Blessings, Karen Kylie and Leah’s mommy forever and ever

June 9, 2006 Hi all, I know it has been some time since I updated but my Mother just passed away early this morning. She had been in the hospital for a month battling pneumonia and a mild heart attack. We will miss her always but now I know Leah has her Grammie with her. Fly High Mom – I know Leah will show you all around heaven and please remember to send signs. You were both true angels here on earth and I think God just needed you home. I will always love you both. Leah, I miss you more and more each and every day. Kylie’s school all pitched in and had a beautiful portrait of Leah painted and framed as a gift to us. Thank you so much to the entire School family. You have truly been a blessing in our lives and I couldn’t think of a better place for a child to go to school. I am exhausted so I will close with the thought that you all have a wonderful weekend. God Bless. Karen Kylie and Leah’s mommy forever and ever

May 27, 2006 I know it is been awhile since I updated. I think I will continue journaling at least until mid-August and then I will focus all of my attention on our corporation. We opened Leah’s Happy Hearts and we are just getting started but you will be able to read about us at www.leahshappyhearts.org. Please keep checking on the website because by late summer I would like to start selling merchandise and accepting donations. The most exciting part for me will be hosting events for children with brain cancer. Just to see a smile on their faces will be so rewarding. Well life continues to be a real struggle. I feel summer coming and it makes me sad. It is a new season with new memories coming back from last year; swimming, playing in the yard in the sprinkler, etc….I feel jealous when I see parents with their healthy kids. It is so darn difficult to continue marching along. I was talking with Phil at dinner last night and I was saying that nothing makes me happy; I could win 1 million dollars and it would not make me happy. Going to the Bahamas didn’t make me happy; buying new clothes, appliances, nothing, nothing makes me happy. The bottom line is that family is all that really matters to me and I so cherish that more than ever now. Kylie continues to worry me as she keeps her feelings bottled up yet I see certain behaviors coming out that concern me. We all miss Leah so much. I want to hug her so badly and the more time goes by the more difficult it becomes to remember that feeling. I just remember that is was pure joy and the most lucky wonderful feeling in the world. Now instead of having 2 angels to hug, I only have 1 to hug. I was cheated and there is no way to disguise that or put fluff around it. I appreciate everyone telling me she is in a better place, and be strong Karen, but when you are telling me that I’m thinking, “what if this was your child?” You wouldn’t be so accepting of it believe me. There is nothing that makes this better. When I die I will know the answers to all these questions and hopefully I will be in the same place as Leah, God willing. Sorry for not having inspiring words but that is how I feel right now. My Mother is in the hospital and has been for 24 days. She had a mild heart attack and pneumonia, and is now in physical therapy so that she can obtain enough strength to stand and walk. So with that and work being so stressful it is just one big stress party. I’m so looking forward to a couple get-aways we have planned because escaping from reality is the best thing for us right now. Well take care everyone and please sign the guestbook. Your words inspire me even if it is just to let me know that you are thinking of us. Thanks. Karen Kylie and Leah’s mommy forever and ever

May 14, 2006 Hi all, I found this on someone's website and thought I would share it with you on this incredibly difficult day. Dear Mr. Hallmark, I am writing to you from heaven, and though it must appear A rather strange idea, I see everything from here. I just popped in to visit, your stores to find a card A card of love for my mother, as this day for her is hard. There must be some mistake I thought, I saw every card you could imagine Except I could not find a card, from a child who lives in heaven. She is still a mother too, no matter where I reside I had to leave, she understands, but oh the tears she's cried. I thought that if I wrote you, that you would come to know That though I live in heaven now, I still love my mother so. She talks with me, and dreams with me; we still share laughter too, Memories are our way of speaking now, would you see what you could do? My mother carries me in her heart, her tears she hides from sight. She writes poems to honor me, sometimes far into the night She plants flowers in my garden, there my living memory dwells She writes to other grieving parents, trying to ease their pain as well. So you see Mr. Hallmark, though I no longer live on earth I must find a way to remind her of her wondrous worth. She needs to be honored, and remembered too Just as the children of earth will do. Thank you Mr. Hallmark, I know you'll do your best I have done all I can do; to you I'll leave the rest. Find a way to tell her, how much she means to me Until I can do it for myself, when she joins me in eternity. I miss you and love you Leah more and more each day. I know if you were here you would be giving me a big huge hug and I love you for that. Forever your mommy, Karen

May 11, 2006 Hi all, It has been a while since I last wrote but with Mother’s Day coming up, thoughts of my Leah in heaven are racing thru my mind. I have lovely Kylie here with me and lovely Leah is in heaven. It just seems so unfair and so surreal. Why do these things happen? I miss Leah so much. I know her sister and Daddy and cat miss her as well. I’m hoping that all of you realize how lucky you are to have healthy children and I hope you all cherish them each and every day of your lives. I can’t wait to meet all of the people I have communicated with that have suffered this same journey. I am so looking forward to that day where I can hug you all. As a few of you may know, many of us parents of children that have become angels due to this horrible tumor will meet this summer for a little get-away of sharing feelings, etc. We will be heading out west for a few days to finally meet some people that I’ve known only thru emails. I hope, and I know that many lasting friendships will be made. Thanks so much Carla for planning this. I have wanted this for so long. My dearest Leah, I will be missing you this Mother’s Day. Please remember I am still your Mommy and always will be. I thank you for the best 5 years of my life. When all 4 of us were together as a family playing games, eating ice cream, walking on the beach, snuggled together in one big bed during thunderstorms. I miss rushing to daycare/preschool after work where you would yell “Momma!” and come running up to me with your open-mouthed smile. I miss you showing me all of the colored pictures you made during school as you would slowly pull them out of your cubby and say, “this, and this, and this” as you held them up proudly for me to see. I miss your Eskimo kisses and they way you used to kiss your cat Batman. I miss you reading books with your big sister Kylie and the proud look you had on your face when you would walk to the Miss Annie and Mr. Paul’s with your wheelie suitcase being pulled behind you. I miss you waking me up in the middle of the night to jump into our bed with us. I even miss the last few months with you when you would wake me up to go potty several times throughout the night. I miss playing Sequence, Princess Game, and Guess Who with you. I miss having you read to me and the times I read to you. I wish I would have done that even more. I miss eating lunch with you at the green restaurant in Laurel Park every Wednesday. I miss you and love you so much I can’t stand it. I promise you I will try to make a difference in this world in your name. I sure hope it is nice where you are at and that you can see me and hear me and know what I am thinking. I hope you hear me when I go to the cemetery while I am singing and talking to you. I plan on buying a butterfly kit so I can watch them grow and then release them in the cemetery. I hope that if we do move to another home, you will follow us and stay with us like always. Please know that on this Mother’s day, I will be missing you and hoping that you can give me a big hug and kiss in some way. Please let me know that you are okay and that I will see you again. I love you forever and ever pumpkin. You’re forever Mommy, Karen

April 23,2006 Dear Friends, I feel the need to update. Although the days are getting tougher and I still feel like screaming I thought I would share something on a positive note with all of you. Last Wednesday I went to the cemetery and was talking to Leah as usual. It was a beautiful sunny day and it seemed like I was the only one there visiting someone. After speaking and praying to Leah I decided to sing the last two verses of the Kenny Chesney song called “Who You’d Be Today.” I sang it loud and clear even though my voice is nothing much to speak of. Mind you I have never heard of this song before until a dear person sent me the tape telling me that she thinks of me when she hears the song. I fell in love with the song and played it at Leah’s memorial service. The last line is: “The only thing that gives me hope Is that I’ll see you again someday, someday…somedaaaaayyy, Someday, somedaaaay. “ Well on Friday morning we woke up to the radio alarm like always. This time it was on a country station and the Kenny Chesney song was playing. Did I accidentally move the channel knob while setting the alarm? Isn’t it something that the song was playing and I’ve never heard it on the radio before?? Very cool. That same day Phil called me and he was at work. After washing his hands 2 hours after arriving at work, and noticed something in his hair. He pulled on it and it was a white feather. I believe these were signs so I’m taking them and running with them. I am believing. Easter brings us hope and we must remember that Jesus rose from the dead so we too will rise from the dead someday. I love you and miss you so much and I wouldn’t trade a day that we spent with you. If I had the opportunity to do it all again with the same outcome I would do so in a minute. The 5 years of joy were worth the pain. Thank you Leah for showing us what it is like to be brave and to always keep a happy heart!! Loving you forever with my aching heart. I read a story on someone’s website and it was on ours before too but I think it bears repeating. I think it is good to read every month or so. There is nothing that will ever make me think that losing Leah is worth changing the world but it is a cute little story anyway. People say to go with what the Lord has given us but I need to ask “What would you do if it was your child?” It’s easy for people to judge and give advice but what would you really do? There I go, off on a tangent again. Enjoy this story.

April 20, 2006 Just a note to let you know we are all still breathing. It is still getting more difficult and I believe that we are still moving up the incline as reality sets in. Since children login I will just say, “This stinks!” Cancer stinks!!! Thank you to all of those that still sign the guestbook for I love reading them. It helps more than you will ever know. Thank you to Diane V. and Diane D. You are both angels here on earth I believe and your thoughtfulness is amazing. I know it takes time and energy to do the things you do and I want you to know we appreciate it with all our hearts. I just am not good at writing thank you’s these days as all of my energy is put into my day job which is about all the energy I have at this part of my life. That takes up all of it. Thanks to those that realize Kylie is sensitive and you being sensitive towards her feelings is also appreciated and noticed. Okay, enough of that. I met with Leah’s oncologist yesterday and although it was painful, I am glad I did it. I can’t say it made me feel any better but it did help me to understand exactly what was probably going on in her little brain. I understand the brainstem functions better and how they interact with the other parts of the brain. I actually know too much now. More than I ever wanted to know about a stupid tumor or the brain. We talked for about 2 plus hours so I do appreciate her spending her time with me. I also requested all of Leah’s medical records. I purchased a weeping cherry tree at Angela Hospice and they will plant in on April 28th at noon. There will be a plaque with her name on it right in front of the tree for all to see. I will be there along with Phil and maybe even Kylie. I also want to plant the same type of tree in our backyard so that there is some type of living thing that we can always stop by to see knowing that it signifies life….Leah’s life in this house. If we stay in this house we will enjoy it and if we move, we will drive by often and visit our friends next door so we will always be able to see her tree. The Leah tree. I’m also thinking about getting some of Leah’s shoes bronzed as I can’t part with them and I’m not sure what else to do with them. I even smelled them, lol, hoping to get some type of familiar scent but I don’t think her beautiful little feet ever smelled. I’m in the process of designing some purple bracelets that we will sell as part of our fundraising efforts for Leah’s Happy Hearts. More to follow on that. We, I, just miss her so doggone much. I long for her hugs, kisses, smiles, and smells. I didn’t think my grief could get any worse but it has. I sometimes can’t stand it and I want to scream. Sometimes I want to start digging when I go to the cemetery….I know it sounds weird but the thought goes thru my mind. I wish I would have taken more pictures of her when she was on steroids instead of thinking I’d rather remember her not on them. I wish I would have recorded every day during the last 3 months of her life. I think of her every minute of every day and it never stops. I love you Leah and I miss you so much. You are my baby girl and you will be from now until eternity. I hope you can see me right now and know that you are always in my heart and that we will be together again. Until then, I will be missing you……………always missing you. Karen Kylie and Leah’s mommy forever

April 2, 2006 Hi all, Easter is coming and it is ripping my heart into more shreds than it already has. I think Easter is tough for 2 reasons, 1) it signifies new life, spring, tulips coming up, kids riding their bikes, and 2) it was the last healthy season Leah had, the last season where she looked herself and she wasn’t afraid to look in the mirror. Yes this Easter I will have to grin and bear the fact that only 1 of my children is playing outside, swinging on swings, going to church with us and riding a bike. It is the worst. I don’t want pity but I would like there to be an understanding and awareness out there. I’m here to tell you folks, it is more difficult now than ever. I don’t know what lies ahead but I can tell you it is 7 months past Leah’s journey to heaven and it is about as bad as it has ever been. As time goes on you realize just how permanent this is and it has been that much longer since we last hugged her and kissed her. That much longer since I heard her say “I love you.” So please don’t expect us to be concerned about much right now other than our own grief. It takes so much energy out of you that there is none left for small worries. Sorry but that is the way it is. On a positive note, I am grateful for the 5 years we had with Leah. She was a gift from God for sure and I feel so lucky to have been chosen to be her Mother. She truly was an angel and is now doing what she does best. She taught me a lot about life and especially love. My heart will have a hole in it forever and I will think about her every minute of every day. I love you Leah and I miss you so much. We must keep in mind that everything we have is on loan from God; it is not ours. Everything can be taken from us at any minute but the love we have in our hearts for our children will ALWAYS be there. Sleep with the angel’s, pumpkin. I hope you still have a pretty light and that your heart is happy even though I know you miss being physically with us. You loved us and we loved you and I will keep that in my heart from now to eternity. I love you Leah! The Compassionate Friends is a non-profit organization that is going to have a week long seminar for parents of deceased children in July. It is at the Hyatt Regency and there will be a “Walk to Remember” where we walk remembering all of our children that have gone too soon. Of course we will be holding a sign or wearing shirts in Leah’s memory. If any of you would like to share in the walk it is July 16th and you must register at the Compassionate friend’s website which is http://www.compassionatefriends.org. The cost is $15.00 and I believe that includes the t-shirt you will wear. That’s all for now. Please pray for our continued strength to make it thru each day and for other families that have lost their children too soon. Too many to mention. Please keep Kayla, Kate, Timmy, Chase and Trent in your prayers as well. Love and Peace in Christ, Karen

March 20, 2006 Hi everyone, I know it is has been awhile since I updated but it has been busy. We are putting our house up for sale and that has been a very difficult decision. We were looking for houses right up to Leah’s diagnosis and of course we stopped immediately upon diagnosis so we could put all of our energy into Leah and her healing. Now, I’m thinking we are picking up where we left off and a change may do us good. Time will tell. It is still a struggle of course and I feel so badly for Kylie. She lost her best friend and sister and it just breaks my heart. She is doing okay and it seems like she is maturing overnight. What a life lesson for her to learn so early in life. It seems like it has been so long since I was able to hug and kiss Leah, yet it has only been 7 months. I miss her so. I look up to the sky often and say “where are you?” It just drives me crazy trying to figure out where heaven is, can she see me everyday? Will she know where we are at when we move? Our house is filled with pictures of her and of course her sister and I will always keep it that way. This Easter will be tough as I see the little girls with their Easter dresses and bonnets. I look at other Mom’s with their little girls and it makes me so feel so bad; it just rips my heart out. Life is not fair as many of you know. Everyone goes thru some type of trial in their lives and some of us just get dealt worse cards than others. Leah’s Happy Hearts will be a corporation this week and I have to wait until after 4/15 (tax time) to get my tax-exempt status booklet filled out. Lot’s of work indeed. I’ve been logging into the online support groups quite a bit and that has been my main means of support now. We all feel the same way of course and it is good to have someone know exactly what you feel having been thru in themselves. This is a path that I hope none of you ever have to endure. As I’ve said before, losing a child is the worst. Life must go on and we go thru the motions waiting for our chance to see Leah again. We will try to live the rest of our lives with God in our heart and with any luck, we will be with our baby again. Please sign the guestbook when you get a chance so I know you are still there. Thanks to all my friends for always being there for me and you know who you are. I love you. Take care and as always, hug and love your children or the people that are closest to you. Karen Kylie and Leah’s mommy forever

March 9, 2006 Hi friends, Life keeps going on and this is the toughest thing I have ever gone through. I can’t tell you how badly I want to touch Leah’s hair, kiss her soft cheeks, and hug her as tight as I can. It is so painful knowing I can’t do that again here on earth. Unless you’ve been there, you have no idea. This is horrible. I read my support group posts every day and check on about 10 different children every day. It helps me to not feel so alone. Thank God for Kylie. She keeps me going and trucking along. Nothing much new. Kylie seems to be doing okay; yes her math is improving. I just love to be around her now more than ever. I’m trying to be the best Mom I can be for her. Thanks Miss Diane for being so thoughtful and thinking of Kylie. Your words of inspiration mean more than you know and I read them often. Much love to you! Well I’m going to make this short because I want to go and be with my family. Thanks for all my friends who continue to be there for us and I hope will continue to do so. One thing I learned is that you can’t take anything for granted. I hate to say it but when I see children whether in pictures or in person, I always think to myself, “will they be the next one that is plagued with this dreadful disease.” I was so naïve before and now I realize this can happen to anyone. I also realize that nothing takes away the pain. It doesn’t matter if you travel, drink, shop, work, or do things with friends; the pain is always there and is constantly ripping at your heart. Bear with me because this is a slow process and I realize I have to learn to live with this excruciating pain. Oh on the outside it may look like I’m doing okay but it is just a mask, a costume I put on to get thru the day. I really don’t have a choice. We have to make a living. Everyone tell your children, spouse, or that special person that means the world to you just how much you care about them. Here’s hoping we all stay healthy and for those fighting cancer, may you win the battle. Please keep praying that we continue to have strength to go on. God Bless, Karen Kylie and Leah’s mommy forever

March 1, 2006 Well we are back from our “Give Kids the World” trip. Give Kids the World is a village that terminally ill children go to usually thru a Make a Wish trip. It was bittersweet being there. We were able to see the brick paver we purchased, we rode the carousel, the train, and ate breakfast and lunch there. The best part of all was going into the castle which is a magical place by itself. On the castle ceiling are a bunch of mirrored stars that the children put their names on during their visit to the village. The attendants found Leah’s star and each of us climbed the ladder to see it not remembering if she had signed her name herself. Well lo and behold she did; it was so cute because she couldn’t fit her entire name on the star so she had put LEA on one line and then an H on top of the E. Kylie’s name was on one point of the star and Mom and Dad were on the others. It made us all cry as we stared at her signature knowing it was just 1 _ years ago that she signed her name. I found out that anytime you go to Florida you can call them up ahead of time and ask if you can volunteer during the week you are staying there. That is definitely something we are adding to our agenda for future trips. How are we? Well, we wake up and get thru each day knowing that Kylie needs us and depends on us. She deserves a good life and we are going to give it to her as we did before for our girls. God, I miss Leah. I miss her smell, her touch, her hugs, her voice saying “I love you Mommy” and “Momma, my hearts happy.” It’s getting to where I don’t want to go to the mall anymore because that is where we would go together a lot. Her room still looks the same and I’m wondering how I am ever going to pack it up. I’m going to try another counselor that is Christian so I’m hoping it will be a positive experience. Kylie has started with a tutor once a week and she will still attend Sandcastles support group when it doesn’t interfere with her homework. Kylie seems to be doing ok but still thinks I am mad at her all the time. I’m not. Phil and I are hanging in there and doing some soul searching trying to figure out a few life altering things that we might do together. Our non-profit is still in the works and will probably take a few more months before all of the paperwork has been completed. Cousin Dave, I need you! Well that is all for now. Take good care of your families and hug your children. God Bless, Karen Kylie and Angel Leah’s mommy forever

February 10, 2006 Hi all, Well it has been a tough tough day so here I am writing again. When the going gets tough, the tough get writing. I wish I could tell you it gets easier but it doesn’t, it only gets more painful. At times I feel my throat closing up on me, tightness in my chest and I can’t breathe. I am torn between wanting to be here on earth, and wanting to see the afterlife. I want to be with Kylie and Phil, but yet I want to be with Leah. It is a difficult place to be. I don’t want anyone to feel sorry for me, but I just want to create an awareness out there. This CAN happen to anyone!! Never take a minute for granted. Never in my wildest dreams did I think we would lose a child; that is not the natural order of life. When we are little we are brought up to believe that as we get older and I mean old, you will die. There is somewhat of an acceptance and less shock when life follows that which we were grown up to believe. Not saying it is not also difficult but, I must saying losing a child is THE worst. I have to believe that these children that die too young were true angels here on earth and we were selected to be their special parents. These children seem so unique and special and brave. They are amazing and I will always think of them when I am going thru anything frightful in my life. Kylie is having a tough time with Math at school so I’m thinking a tutor may be necessary. She is beginning to have a hard time concentrating and I just really feel for her. I’m not making excuses for her but I know how difficult it is for me to concentrate on anything. It is almost impossible right now. Please pray for her so that she stays strong and not bitter because of the great loss of Leah, who was her best friend and sister. Kylie went to her first Red Wing game with us and some friends thanks to a dear friend (Thanks Dan!) and had a good time. We had to stop going to Sandcastles as Kylie’s homework is becoming too much and Sandcastles in an hour and a half on a school night I am going to have to work on finding a good Christian counselor for both Kylie and I. Thanks to everyone for checking on us again. Please keep Cameron’s family in your prayers for he flew to heaven from a brain tumor also. That was 3 children in 3 days with the same thing. Very sad! Still working on the non-profit organization we are forming in Leah’s name. I’m really hoping it will be somewhat healing and help to make children’s hearts happy. Have a great weekend. Oh, and please note that I added to the “What to Say” section of Leah’s website. Many people have written to me and thanked me for having this section so I decided it is best to add as I see fit. Blessings, Karen Kylie and Leah’s mommy forever

February 3, 2006 I am so sad right now. Two more children have gone to heaven that had the exact same tumor as Leah. I hate this tumor! I hate cancer! One is adorable Sam Walsdorf who passed away last night. His website can be found at Caringbridge.org.The other angel is beautiful Sydney who was in 6th grade. They were both fighters but the tumor won like it always seems to do. Please keep these two families in your prayers. Not much else to say. Feeling very blue the last few days. I’m dreading spring with the beautiful tulips coming up. I’m dreading the thought of watching children on their bikes without my beautiful Leah. I’m dreading the Easter Egg Hunts and seeing the little girls in their pretty dresses and hats. They are all reminders of the way it used to be and how I must live with the “new normal.” We were cheated and robbed for sure. Leah has this snow globe that we purchased from “Give Kids the World.” Give Kids the World is the place we stayed when we went on our Make-A-Wish trip to Disneyworld. Well I walked into her room and looked at the snow globe and knew that I just had to go back and visit. Former families can go back anytime and have a meal, ride the carousel and feel some comfort and sadness as they revisit their favorite spots. We had purchased a brick paver there with Leah’s name on it and we also glued a star on the ceiling in the castle. We made plans to visit at the end of February. It will be a short trip but I think it is something that I must do. Our good friends are joining us on the trip and we are hoping for good weather. Kylie is doing fine and is really into her gymnastics. She will start swimming soon as well. Phil is also doing okay. I guess you could say we are going thru the motions which is all you can do right now. You have to keep on trucking. Thanks for checking in on us. You all mean so much to us…you really do! I love you my precious China Doll Leah. I miss you! If you’re going thru Hell, keep going! Have a Blessed day, Karen Kylie and Angel Leah’s mommy forever

January 26, 2006 Hi all, Feeling blue today. This is getting worse. I hate when people say you will heal in time. I will never heal. I hope I learn how to better cope but heal, no, bad choice of words. Anyway I was viewing some sites and came across the words below which I thought were so true. I can’t tell you how much the below statements hit home for me, so so sadly true. It is all about the new normal, the normal that one only knows if they have been thru the loss of a child. What a terrible loss it is. I love you and miss you Leah forever! Thanks to all of you for continuing to be there for me thru this new “normal”. It really means a lot to me. I love the guestbook entries as well for they seem to give me strength for that day. Also stay tuned because our non-profit foundation is in the works.If anyone would like to help with any events in 2006 please drop us a line. Kylie and Angel Leah’s mommy forever xo WHAT IS NORMAL NORMAL is trying to decide what to take to the cemetery for Christmas, birthdays, Valentine's day and Easter. NORMAL is feeling like you know how to act and are more comfortable with a funeral than a wedding or a birthday party. Yet, feeling a stab of pain in your heart when you smell the flowers, see the casket, and all the crying people. NORMAL is feeling like you can't sit through another minute without screaming because you just don't like to sit through church anymore. And yet at the same time feeling like you have more faith in God than you ever had before. (so true for us) NORMAL is having tears waiting behind every smile when you realize someone important is missing from all the important events in your families life. (another real truth) NORMAL is not sleeping because a thousand "what ifs" go through your head constantly. NORMAL is having the TV on the minute you walk into the house to have some "noise" because the silence is deafening. NORMAL is telling the story of your child's death as if it were an everyday common event and then gasping in horror at how awful it sounds. And yet realizing it has become part of normal conversation. NORMAL is each year coming up with the difficult task of how to honor your child's memory and their birthday and surviving those days. And trying to find a balloon or flag that fits the occasion, "Happy Birthday"? Not really! NORMAL is a new friendship with another bereaved parent and meeting over coffee and talking and crying together over your children. And worrying together over the surviving children. NORMAL is being too tired to care if you paid your bills, cleaned your house, did the laundry or if there is food in the house. NORMAL is wondering this time whether you are going to say you have 1 or 2 children because you will never see this person again, and is it worth explaining that one of them has passed away. And yet, when you say 1 child to avoid the problem you feel horrible as if you have betrayed your child. (so true) NORMAL is hiding all the things that have become "normal" for you to feel, so that everyone around you will think you are "NORMAL". ( I tend to do this at work)

January 21, 2006 Hi all, I don’t know what to say right now other than the pain is so unbearable. This week has been very tough and I’m having a really hard time. I have to say most of you have been great but there are still a few people that say the stupidest things to me as if the pain should now be gone. I don’t understand the mentality of some people. I know I must go on for Kylie and Phil but sometimes I feel as if I just want to leave this world full of sickness, crime, and pain and go to be with Leah. Don’t worry, I’m not going to do anything stupid but I need everyone to understand how very difficult it is to wake up everyday and face the day. Face the day with a broken heart, a broken chain in our family. Everyday I think about what we would be doing together; going to the grocery store is a very heart wrenching experience as I walk up and down the aisles. Walking thru Laurel Park I see all these people going on with their lives buying all these material things (which I did quite a bit in the past I must say) and I think to myself how meaningless all of this is. How will I find meaning again I always ask? I hate procrastinating and it is so easy to do that right now so I pushed myself to get on the phone yesterday and had a nice conversation with someone at Mott’s Children’s Hospital. I AM going to open up a 501c3, yes indeed. I promised Leah I would do this so it is something I must follow thru on. I also purchased a book on opening up a non-profit organization that I already started to read. I also learned that I can volunteer at the hospital 3-4 hours a week which is something I want to start doing as well. I can work on any floor I choose which is kind of cool although I’m sure it will hurt my heart quite a bit the first time I walk thru the doors. The doors of the hospital that Leah passed away in……how I wish she would have been at home but we had to do everything we could to possibly save her and free her from any pain. We miss you and love you Leah. Kylie is doing okay and seems to like her new social worker. I will begin meeting with her starting Wednesday as well so I hope I have the same good experience that Kylie had. Kylie is our sweet ray of sunshine that helps to brighten our day and keep us going. She is full of life and doing as good as one could expect. I hope everyone has a good week. I work at Ford so everyone is anxiously awaiting the news on Monday about the restructuring plan. I hope it is not too bad because Michigan economy is not good at all. Michigan is not the place to be right now. Phil has gotten some good leads on jobs out of state but we have been turning them down as I need to get my 30 years in at Ford. Well thanks for checking on us. Thanks for all of the frog stuffed animals and statues that have been coming our way. Please keep us in your prayers, and also Sydney, Cameron, and Timmy’s families. All 3 of them are battling this tumor. Please keep Dani Ella’s family in your prayers as well as she just became an angel. http://www.caringbridge.org/hi/daniella/ Blessings, Karen Kylie and Angel Leah’s mommy forever and ever

January 14, 2006 It is difficult to write because I feel as if I’m saying the same thing over and over again. Fact is the pain is there and is and always will be there. I still can’t believe this happened to us. My baby is gone! Leah, how I wish I would have taken you to the grocery store 2 days before you slipped into a coma, how I wish I would have held you and kissed you instead of being on the phone with hospice and then the doctor as you were kicking your legs in pain. I hope you understand that I had to get people to the house quickly and by the time I got off the phone you were vomiting in the bathroom and seconds later beginning your decline into the coma. That day still haunts me. Leah’s birthday was January 11th so we held a small balloon launch at the pre-school/daycare that she knew and loved (we loved it too!) The launch was followed by an amazing service at the small chapel (with Fr. John of course) located in the hospital next to the school. Several teachers along with family spoke beautiful words about Leah which made us giggle and cry all at the same time. Thanks to all of you for being there and for taking the time to write such lovely things about our precious Leah. Yes, I spoke also but my tears would not stop flowing so I hope everyone was able to understand what I was saying. It was beautiful to see the purple balloons fly away into the sky. I hope Leah was able to read each and every one. Leah’s best friend Katie was there along with several of her other close friends. It was a small, quaint service and something that I am so glad we did. Thanks to all that were involved to help us pull this off. Someone even brought a green balloon for Justis Wayne who became an angel recently (thanks to the Kaley family for that thoughtful gesture). I wish I could have invited everyone we knew but please understand that it was a small chapel so I kept it to family, teachers, and Leah’s closest friends. All in all a memorable day. Kylie is doing okay and both she and I meet a new social worker this week. I’m hoping there will be a connection and that she will be someone that will leave us feeling good about ourselves. Sometimes we just feel so bad for Kylie. What a life lesson to learn at such a young age! We love you Kylie. Happy 6th birthday Leah! I love you and miss you and I can’t wait until we see each other again. Until then, please send us more signs and know that you are on my mind 24x7.

January 8, 2006 Hi all, Just a short note to let you know that Leah’s birthday is January 11th, Wednesday and we are asking everyone to release a purple balloon in her honor that day between 4:30 – 5:00 p.m. Happy 6th Birthday Leah. We miss you and we love you!!! Please pray for our strength to go on and for all of the families that are still battling this disease and those that have lost their children to this horrible tumor. Justis Wayne became an angel this past week so please keep his family in your prayers. Hug your children today. Blessings, Karen Kylie and Leah’s mommy forever and ever

January 1, 2006 Healthy New Year everyone! I know it has been awhile since I updated but we wanted to do something non-traditional for Christmas this year as we knew it would be very tough. We went to the Bahamas for one week and spent Christmas morning in Paradise Island. I have to say it was a great idea to be away and in a different environment. We missed Leah dearly and Christmas Eve I had a very difficult time in the lobby of the hotel. It just hit me really hard as I was sitting there watching people come and go and the tears began flowing like water. All in all, Kylie had a good time although I could tell she was missing her sister as she played in the sand alone. The first day we got there it was about 2:00 p.m. and it was raining. We turned on the weather channel and all of the islands showed rain, so it looked like we were surrounded by rain. It said that it was going to rain all day and the entire next day. I went out on the balcony and looked up at the sky and began talking to Leah. My ending sentence was, “ok Leah, please show us some sunshine, talk to the big man up there and ask if he can bless us with some sun.” Do you know that after about 1 hour the sun came out and it remained partly sunny the next 3 days. Thank you Leah. Well here we are with the New Year and the first New Years day without Leah. God I miss her so much and it still seems unreal. Her birthday is on the 11th so I think that entire week is going to be weird and emotional. Each day is a struggle and I have to admit that I think of her every minute and I mean that. She is constantly on my mind. It almost makes me anxious to die so I can soon learn about heaven but then I find that I don’t want to leave my Kylie or Phil…..so I find I must be patient. I continue to carry many pictures of Leah with me and I sleep with the unicorn she gave me “Unie” every night. I love you Leah!!! We love you and miss you!!! I’m trying to be the best Mom I can be to Kylie in spite of the anger I still walk around with. Kylie seems to be doing ok although her social worker is moving in 2 weeks to another state so I will have to find someone else as loving as her to talk with Kylie in addition to someone for myself as I was seeing this women also. I have been doing a lot of reading in the hopes of coming to some kind of peace with all that has happened. I talked to a priest a few weeks ago (Fr. John) and he said he didn’t want to discourage us but it is going to get a whole lot worse before it starts to get better. He gave us a couple of books to read and one of them is called, “The Travel Guide to Heaven” which we are finding is a pretty cool book. Thanks to everyone for continuing to be there for us because if it was not for all of you, this unfamiliar journey would be even more difficult. Thanks for the cards and gifts you sent this Christmas and for your guestbook entries because I still read them every day as it is a way of feeling comforted. I hope this year they find a cure for this dreadful tumor. Please continue to keep families battling cancer in your prayers. Please pray for us to find strength each and every day. God Bless, Karen Kylie and Leah’s mommy forever

2005 Updates

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