October 2008
October 30th 2008– Thank you. Two small words, yet I can’t seem to find any others to use that would express the depth of our gratitude to all of you. I am in awe of the way people continue to support us, and give us hope that we will get through this. I love the texts, e-mail, voice mails, and messages on Jacquie’s web site. Even though I still spend a good part of my time alone crying, I get so much happiness from hearing from others and how they are doing, and what they are thinking. I wonder how it is that both our children were blessed to have such wonderful friends. I hope the parents of these young adults are proud of them, and have told them that they are. As a parent, I would be proud to call any one of them mine. They are thoughtful,caring and loving, and it makes me feel closer to Jax when I hear from them. Everyone who has taken the time to keep in contact with us, thank you. Thank you for sharing your thoughts, your ideas, your fears, your song lyrics, your poems and your dreams. As the days go by, I don’t feel less sad or less angry, but I do feel more confident that we will not be left alone and Jax will not be forgotten. And for now, that is enough. I try to remember that I lost my daughter, but I now have a way for her to live on, in her friends sharing their lives with us. When I read or listen to a messages I wish I could thank each person individually, and hopefully, someday I will see each of you and be able to do so. To all you moms, there is no job in the world that compares to being a mom- nothing is more important or special. I love being Jacquie and TJ’s mom, and will feel forever blessed to have been given two such wonderful children. I hope you know how blessed you are to be a mom. “A daughter needs a mom to teach her how to be a mom someday.” I’m so sorry Jax that you will not have a chance to be a mom, because I know you would have been the most awesome mom that there ever was. And I am so very proud of the woman you are and the mom you would have been. I love you my darling daughter Jacqueline Elisabeth, love forever and always, your mom
October 27th 2008– It was a dificult weekend. On Friday, Torey, TJ and I went up to Williamsville North to present the first annual “Jacquie Hirsch Memorial Scholarship Award” to a North senior. The first recipient is Kearsten Renzi, and she received a plaque and a scholarship from the Jacquie For “ALL” Foundation. It was hard for us to be back at the pool without Jax being there with us. There was a huge “We Believe” sign and a Tinkerbell drawing at one end of the pool, and I hope that having it there gave the swimmers an extra incentive to swim their best. Coach Doug Cassidy, his staff and his swimmers have done a great deal to help raise awareness for the need to find a cure for cancer and leukemia. They have donated so much to Jaquie’s foundation so that we may continue her fight to help those who are battling cancer and leukemia. The team has honored her memory by wearing her poem on their team shirts this season. The North swimming and diving team has our sincerest thanks and gratitude for remembering Jacquie, and for helping us move towards our goal of a cancer/leukemia free world. On Saturday, we were invited to Buffalo State College for their swimming and diving meet against Geneseo. Again, it was so very hard to walk into the pool, knowing Jax wouldn’t be diving, or being with us to watch TJ dive. We were very honored to be presented with a beautiful white rose bouquet, and then they had a moment of silence in memory of Jacquie. We were so surprised at the invitation, and then we considered how far-reaching her influence has traveled. To Mike Switalski Buff State head coach, his staff, swimmers and divers, thank you for taking the time to remember Jacquie and to let us know that she mattered to you. Sunday morning found us at another memory service, this one at Faith United Church of Christ in Boston (NY). Tracy (Torey’s brother), Jennifer and Jillian invited us to their church where all the members had been praying for Jacquie for the past year. Sunday was a Rememberence Service and each family had someone go up to the alter to light a candle when their loved ones name was read. When the pastor read Jacquie’s name and Torey lit the candle, I wanted to scream and make him stop. It seemed unreal that we would hear her name at one of these services, it wasn’t right. Only really old people should have their name called, not someone who is only 23, and dammit-not Jacquie. It made me so angry that her name had to be included with the others. Although we realize that the service was meant to honor, and we really appreciate all the prayers and support from all the church members, it still doesn’t help because she is no longer here with us. But we do want to thank everyone for letting us know they care. A better part of the weekend came with a phone call from Jacquie’s friend Liz, in Chicago. She and her roommate sponsored a bone marrow drive and signed up 50 more people! And we heard that another person who registered at Jacquie’s first drive received a phone call about being a possible donor. This makes 6 who have been asked that we know of. If you get that important call, please let us know and keep us updated, Being a donor is such an incredible thing to be able to do. Mary Alice and Ali presented Jacquie’s foundation with an unbelievably generous check on Saturday. I don’t think any of us could have believed what a huge success that fundraiser would be. I hope all who participated and who gave donations and their time know how very grateful we are. There are so many ways that families who are battling cancer need help. For the children who danced, and helped to raise the money, you should know how much you are doing to help other children, and adults fight the battle for their lives. You are making a difference, your selflessness is giving someone else a chance at a better life. You are showing the world that you want to be part of the special group that helps to find a cure. Please keep doing what you are doing, let people know that you are willing to take on this fight with them. Jacquie would be so proud of all of you and would want you to know that caring about others is one of the most important ways to make your time here on earth mean something special. I know that with all these things going on you must wonder how we can still be so sad. So many positive events going on because of Jacquie and what she meant to others, how can we not be happy about it all. We are thankful for all the things everyone is doing, we really are. But it still comes down to our feelings that we want her here with us, and these events are only happening because she is gone. No parents could be prouder to have their child honored in so many ways by so many people. But the pain doesn’t go away, and the hole in our hearts is still there. Our lives were made for four people- four chairs and place settings at the table, four baskets for winter hats and gloves in the closet, four tickets for a Toby Keith concert, and so it goes on. Our lives were not supposed to be a 3, but a 4. And later on, 5 and 6, and then more. But once we became a 4, we were never supposed to be a 3 again. I hate those numbers!!!!!!!! “A daughter needs a mom to show her how to give back to others.” Well, Jax, I think you did give back to others, and now they are giving back in honor of you, to help others. Keep an eye on us Jacquie, and please help us, we miss you so very much. To all of you who continue to write, thank you from the bottom of my heart. I love you my daughter Jacquie and I will love you and miss you forever and always, love mom
October 24th 2008– The sun is out, the day is bright but I still feel lost. I feel as though Jax should be here sharing the warmth of the sunshine. I read Alicia’s message and realized that I do the same thing- I wonder how long it will be until I’m with Jacquie again. It seems like forever since I held her hand, and kissed her. I miss rubbing her legs with lotion before I put her “moon boots” on. I miss talking with her and laughing with her. I miss wondering how long it would take me to convince her that hospital considers it “sleeping in” if you are still in bed after 8 am. Poor Jax, she really hated to have to be up so early- she would bargain for more time every morning. And, usually, if I could, I gave it to her. She knew that the staff had schedules to keep, so she tried to be flexible, but she really didn’t do mornings well. I still, after all the time that has past, find myself awake a good part of the night, listening for her breathing, waiting for someone to come into the room to do vitals, give meds, or check her CV lines. I wonder how long it will be, if ever, that I don’t wake up and wonder if she needs me. I realize now, how much I needed her to know that I would always be ther for her, and I still am. I see how alone I feel without her and I hope she never felt alone. And I feel scared of facing the future without her, and I wonder how she managed to deal with her fear of what the future held for her. We would talk about it, but I can’t imagine living with knowing that your life could end so much sooner that it should. Thinking about it, my heart aches for what she had to deal with. I am so very sorry Jacquie, for all you had to go through and that I couldn’t make it go away, I am so sorry. Casey, I am wearing the necklace, but I don’t feel strong or brave. I feel weak, like a coward. I just want to run and hide away forever. “A daughter needs a mom to remind her, on the bad days, that she is not alone.” Jacquie, I hope you know you were never alone, and you never will be. On the bad days and the good days, all of us were right beside you, hundreds of family and friends. We are still beside you. Jacquie’s friend, Jessica, sent us a CD with a song on it called “Borrowed Angels” after the funeral. I will try to get the words on the web site. The song must have been written for Jax, it is a tribute to her and her life. Once again, I must thank all of you who continue to send messages, cards and texts to us. Each one is a reminder how much Jacquie is loved and missed, and each one takes a little of the pain away, knowing we are not alone. We are grateful that so many people were there for Jacquie and are still there for us. We love you all. To my very special daughter Jacquie, and the only BFF I will ever need, I am here for you always, and I will love you forever and ever, love mom.
October 21st 2008– Another “anniversary”, well, two actually. One year ago today, we hit the first,of what would become many, of those “bumps in the road to recovery” that everyone had warned us about. Jacquie developed a high fever within a matter of a couple of hours, and we had to rush her back to Roswell for intense antibiotic treatment. Her CV line, the line that went into her necxk and was used for chemo, meds, and blood products, was infected. The line was taken out and a new one inserted on the other side of her neck. Jacquie was so upset that now she would have two areas of scars. Little did we know how many she would end up with. Jax spent 6 days in the hospital for this, her first re-admission after diagnosis. After we brought her home, I remember feeling scared every time that I had to take her temperature, which was once in the morning and once before bed. I would hold the thermometer and pray that it was normal. I made her drink so much water so she didn’t get dehydrated, that it’s amazing she didn’t float away. I also learned that I always needed to have her hospital bag packed. I bought double of everything she would need if admitted, so we wouldn’t have to take time to pack if she had to go back in. The thermometer (that numbers thing again) Eight months ago today, was the day that was supposed to give Jax her new life. Her first “New Birthday”, Day 0, her transplant at Sloan Kettering. For those of you new to the site. Jax went down to New York City for her first, and what we hoped would be her only, stem cell transplant. We had such high hopes, and dreams. We believed, all of us, truly BELIEVED, that this would be her chance to win her fight. Counting down the days from 100 (numbers!), we were getting ready on day 85 to come back home, when we found out the devastating news, The leukemia had come back. So it seems that her fight was not over. Today is rainy, cold and dark, just like my heart is. I keep checking out the sky, looking for a “Rainbow Connection”, but all I see are clouds. And those are hard to see through the tears in my eyes. I love you my Darling Daughter Jacqueline Elisabeth- forever and always, Love mom
October 19th 2008– I was going to write yesterday, but I couldn’t. Yesterday was 6 weeks, a breath and a lifetime ago. I told myself I wouldn’t get stuck in the numbers again, However, I can’t seem to get away from them after living with them for this past year. The numbers were everything- they were Jacquie’s life. They told us how she was doing, how hard her body was fighting, how much her efforts were paying off and they told us when she could no longer fight. All those damn numbers and do you think that one of them could have changed enough to keep Jacquie here with us! It seems as though every time I hear a number, I can remember that number being significant in Jacquie’s struggle. And I remember being told by one of Jacquie’s doctors “Try not to get caught up in the numbers, they aren’t the only indicator of what is going on.” But, as time went on, even the doctor kept a close watch on “the numbers” because Jax wasn’t able to tell us how she was feeling and what she felt going on inside of her. And as some of the numbers continued to get dangerously high, and others dangerously low, I thought why does Jacquie’s life have to depend on a bunch of stupid numbers. Why couldn’t it depend on how many of us prayed and believed, how many people loved her and needed her, how many people would be so lost without her, and most importantly- how hard she fought to stay alive? Why do we have to try to go on without her, just because the numbers said so. The sun is out today, and even though the number (temperature) says it is 55 degrees, it seems so much colder to me. I think that’s because the world will always be colder now that Jax isn’t here. While each day, I try to do “normal” things such as wash, clean, shop, cook and run some errands, I feel that I’m missing one of my most important jobs- taking care of Jax. I feel so lost still. We received some pictures of the balloon launch (thank you so very much Harry) and TJ will post them soon. One picture shows the balloons just a fter they were released, and the second picture shows the “J” we were told about. I’m sure Jacquie sent that “J” for all of us.
“A daughter needs a mom to tell her not to be afraid to seize the moment.” Today, that is my message to all of you from Jax. It is a message she would want you to know and try to live by. It was how she lived and what she believed, even before she was diagnosed. Once she was diagnosed, she believed it even more strongly. Just like a breath or a sigh, once a moment is gone, you can never get it back. Jax. we all love you and miss you so much that the pain is unending. We know you are better now that you are in heaven, and we only wanted what was best for you- to be pain free and happy again. But know this, we will never be better without you. I love you my darling daughter, forever and always, mom
October 16th 2008– Aonother one of those “anniversaries” we knew would hurt. A year ago today, Jax was discharged from Roswell, her first time home since being diagnosed and admitted on Sept. 28th. Her discharge came as a surprise that day, because we had been told she would need to stay in the hospital for the duration of the first round of chemo, a total of 28 days. But, as we know, Jax was capable of some amazing things, and after only 18 days, she was doing so well, the doctors said she could go home and do the rest of the 10 days as an out-patient. This marked the first of many times that Jacquie would surprise the doctors and be able to beat their numbers and expectations. She was remarkable, wasn’t she? And tonight, there are over 2 dozen of her remarkable friends who are going to “Light The Night” in New York City for the Leukemia and Lymphoma Society. They will walk across the Brooklyn Bridge, the very bridge that was right outside Jacquie’s window at Sloan Kettering, and raise money for research. We wish them well- a night filled with fun and good memories of Jax, and we thank them all for continuing to fight to make Jacquie’s dream, a dream come true. We BELIEVE that Jacquie’s dream of a cancer/leukemia free world will someday be reality. Jax had many hopes and dreams, many of which she will never be able to see come true. But this one, we can do something about, and she is counting on us. Thank you to all of you who keep us in your thoughts and prayers. We wondered if anybody took pictures of the balloon launch at the funeral, we would like to post them on the web site. If you do, please let us know. I love you my Angel Jacquie, forever and always, mom
October 14th 2008– Unlike the last time I wrote a message, today is windy, dark and rainy. I think that Jacquie knows I’m having a tougher day than usual today. I feel as though my memories of her struggle are stronger today, and I don’t know why. My mind keeps thinking about all she went through and the hurt and the pain, and what her body and mind had to endure. Then, my tears start and they won’t stop. I’ve also been thinking a lot lately, about all the things I denied Jacquie and all the things I made her do, thinking, hoping, praying, that it would make a difference. But it didn’t. So all the times she wanted to go to Mighty Taco, or Olive Garden, or Applebees or any restaurant, and I told her it wasn’t safe for her, should I have let her go? The times we would go out and I’d make her wear a mask, kept her away from crowds, kept her friends away if they were sick- did it all really make a difference or did I deprive her of things that would have made her happier? I made her take meds, and do her mouth care and exercise and rest, and everything else that she sometimes didn’t want to do, but she did it anyways, and did it matter?.. I have so many doubts now about the way I took care of her. Did I fool myself into thinking that if we did everythig “right” that we could help Jacquie beat her leukemia? And in doing so, did I make her time unhappier than it could have been? I guess I’ll never know the answers to these questions, but lately I think about it so much. All I wanted was the best for her, and I thought that’s what we were doing. Somedays, it’s hard to believe.
October 11th 2008– Five weeks. Seems like forever and it seems like yesterday. I am so very grateful to those of you who continue to sent text messages, voice mails and leave messages on Jacquie’s web site. I feel her with me the most when I am reading or listening to those who loved her talk about her and share their feelings about her. Today it is sunny and warm, Jax would love it, so maybe she sent it for all of us- the sunshine is her smile to help dry our tears. Thank you to Chris and Cassie for coming over this morning and helping me to plant the tulip bulbs in Jacquie’s garden. Next spring, Jacquie’s flowers will brighten up the front of the house, just the way she wanted it to. We had such plans for the new house, and how we would make it our new home. I will try to follow through with her wishes and plans, but it will be hard without her next to me helping to make decisions, and laughing at how I am so NOT a Martha Stewart. Jacquie’s book to me, quote for the day “A daughter needs a mom to tell her that beauty never fades if you look in the right places.” As Jacquie’s illness progressed, she changed physically – painfully so. But every time I looked at her, kissed her, sang to her, touched her head, or held her hand, I thought “she has never looked more beautiful than she does today.” Jacquie’s beauty lived all around her, in everything she did, everything she said and in all the lives she touched. She made the world beautiful by her laugh and her smile, and even sometimes, her tears. That beauty must never be forgotten and we all need to try to make the world around us more beautiful. It doesn’t take time or money. It doesn’t hurt or take anything away from us. All it takes is a good deed, a smile or a simple courtesy. That is true beauty that never fades. Jacquie believed that. I do too. My darling daughter,I will love you forever and always, you made this world a much more beautiful place to live. Your BFF (mom)
October 8th 2008– I would like to add my sincere thanks to Torey’s, to all of you who have done the “Light the Night” in Albuquerque (Sara, Connor and Elise), Rochester and Buffalo, and those who will walk the Brooklyn Bridge for New York City’s Light The Night. And, add my thank you to Ali and Mary Alice for the incredible Dancers Give Back benefit last weekend. We were amazed at the amount of people who turned out to support the Leukemia and Lymphoma Society and The Jacquie For ALL Foundation. For all of you who helped put the events together and to those of you who came to support them, we are truly grateful. It seems so many people now have the same dream Jacquie does- the dream of a cancer/leukemia-free world. There is still so much work to do and time is of the essence. Every day another parent, brother, sister, aunt, uncle, cousin, grandparent or friend has to say goodbye to a loved one because we have no cure. I really believe there is one out there, somewhere, it is up to us to help discover it. I have been re-reading letters and cards that Jax has received since she was first diagnosed a year ago. It breaks my heart to read them- they were filled with such hope, and belief that Jacquie would beat this. They were so up-lifting and positive, and I can remember reading them after she was done, Jax would pass them over to me so I would feel better too. The strength and courage that you all sent to her, she passed on to Torey, TJ, and myself, knowing we needed to have those words in our heads too. And at times I can hear the comments she would make about the cards- funny, sad, happy, whatever- she would just have something to say about them, and she was always so thankful for each and every one she was sent. Every envelope or gift she opened let her know how loved she was, and that so many people were fighting with her. I believe she never felt abandoned in her fight, but rather strengthened by the number of people by her side. The cards and letters continue to come , everyday we hear from friends, friends of friends, and “yet-to-be-met” friends. And I read them to Jacquie, just like I did, when she was no longer able to read them on her own. And I still believe that she knows, that she is so very loved, and has not been forgotten, and that we will all continue her fight, and try to make her dream come true. The days are still very hard for me.I want to just stay in her room and be with her. I look at photos and remember what fun she had posing for pictures with her friends. I remember some of the times she didn’t want her picutre taken, but there were very few of those, and mostly when she was in one of her rare grumpy moods. She has hundreds and hundreds of photos that tell of a life filled with wonderful times spent with family and friends. I am angry that there will be no more, I am so angry that I can’t touch her the way I can touch her photos. I am still feeling lost without her. I am sorry to admit this, but it is so hard when I am around her friends and her friend’s parents. I am so envious and it makes my heart feel even more broken that they are still making memories and we can’t make any more with Jax. Now it is just the 3 of us and that number is so wrong. In Jax’s book,”Why A Daughter Needs A Mom” it says “A daughter needs a mom to soothe the pain of a broken heart”, but I think that now, that is why this mom needs her daughter.
October 6th 2008– We hope many of you still read the messages because we really want to thank so very many of you. First we want to send a loud shout out to Sara, Connor, and Elise Gardiner who did the Light the Night walk for Jacquie in Albuquerque, New Mexico. We also would like to thank all those who did the Light the Night walk in Rochester and in Buffalo this past weekend, there were three teams walking for Jacquie. The “Jacquie O’s”, “Walking for Jacquie Hirsch”, and “Yellow Roadway Corporation”. We tipped the numbers at over 90 walkers. Jacquie must have been giving us the biggest smile seeing all the Tink balloons and if we tried hard enough, we could hear her laugh after she read the shirts Sadie made for the walk 🙂 As hard as it was to attend, we thank you all very, very much for letting us know you are keeping Jacquie close to your hearts. There are already 23 signed up to Light the Night for Jax in NYC walking across the Brooklyn Bridge. On Saturday we attended the first annual Dancers Give Back hosted by Mary Alice’s Dance Studio in Orchard Park. Ali, Jacquie’s sorority sister put on the spectacular event in Jacquie’s honor along with her Mother Mary Alice and their wonderful Dance Studio. It was an amazing event pulling together seventeen dance studio’s from around Western New York to participate. Jacquie started dancing at age three with the Mullen Sisters and then spent many years dancing at Spezio’s Dance Dynamics. She danced many nights away with many friends here in Buffalo and friends and sisters in Geneseo. She loved to dance!! Whenever it came down to the question of either “sitting it out” “or dance” Jacquie always choose to “dance”. We can’t possibly thank you enough for this special event, the touching dance to Jacquie’s song Stand, Ali’s beautiful introduction, the dances, the support, the friends, the food (Jax loves food), the video, the Jacquie table and pictures, and a lot of wonderful people meant very much to us. Thank you to those dance studio’s who participated: Barb Denny’s Studio of Dance Arts, Bev’s Dance Connection, CM Dance Factory, Dancentral, Dance Spectrum, Devid DeMarie Dance Studio, Hoffman School of Dance, Karyn Kelly Dance Center, Lorraine Goddard Dance Studio, MARY ALICE’S DANCE STUDIO, Moves N Motions, New York City Alliance, Sam Smith School of Dance, SPEZIO’S DANCE DYNAMICS, Stacy Zawadski’s Performing Arts, Steppin Out Dance Academy, and Sylvia’s School of Dance. It continues to give us great comfort knowing the incredable reach Jacquie had and continues to have on so many wonderful people. Thank you Ali and Mary Alice for such a special day to remember Jacquie, we are sure she too was dancing. Pictures from Dancers Give Back can be viewed here.
October 2nd 2008– I won’t give you a count today because I don’t know what count to give you- how many days since Jacquie was diagnosed, how many days since each transplant, how many days she spent in the ICU, how many days since she left us, or what? Again, just like before, my life seems to be dominated by numbers. Right now the biggest number I am trying to cope with is how long I can go without something reminding me of Jax and starting the tears flowing again. I am finding it more and more difficult to read the cards, letters, and messages you are all sending because I feel that if so many people loved her and needed her, why did she have to leave. The incredible amount of love for our daughter from so many people all over the world has made us feel so blessed to have had her in our lives, But why did she have to leave so soon? TJ and Torey have been great- they are trying to be patient with me, but I think I just am going to have to find my own way out of this, on my own time. Each day when I sit down to write thank you notes, I think- “God, thank you for having all these wonderful, thoughtful, and caring people in our lives to help us through this, but couldn’t we have found out what wonderful friends we have a different way”. Yes, I do know these questions will go un-answered, but they are still in my head. I think of the many stories and funny situations you have shared with us and it makes me proud that she was such a wonderful person. And I know that Torey and I are blessed more than many people are because we have two such children of which we are so very proud. We have a lot of friends who are new parents- former gymnasts, babysitters, and students. They ask “What did you do to raise two great children who have had such an impact on so many people- what’s the secret?” There is no secret. Every parent tries to do the best they can to bring their children up to be responsible, caring, loving adults. There is no “Parents Handbook For Raising A Great Child.” We all make mistake s along the way. We learn from them as we are also trying to teach them. We try to be role models for them, show them what they need to know, not just tell them. And we love them. We love them with all our hearts and souls, and we let them know that our love is never-ending. Our love doesn’t stop if they make a mistake, we help them learn from it so they don’t make the same one again. We are there for them, for advice, guidance and yes, discipline too. I know Torey and I didn’t do everything right, after all, we were “new parents” once too. But we had our parents, friends, relatives, coaches, teachers, and so many others who helped us to raise Jax and TJ. So, those of you who are new parents, or will someday be new parents, remember to learn from those in your lives who have brought you to where you are today. The important life lessons that you were taught, are the ones you must remember, so you are able to look back one day and say, “We did the best we could, and we are so proud of our children”. “A daughter needs a mom who is never more than a phone call away”, is another quote from the book Jacquie gave to me, but I think it should say “A child needs parents who are never more than a phone call away.” Jacquie, I’m trying so hard, please know that. I know what you would want me to do, but I’m going to need time. I love you my darling daughter, and I will love you forever and always. Love mom