June 2009

June 28th 2009 – It has been 295 days since Jacquie left us, 295 days of living without part of our hearts. 295 of questioning “why”, and “why Jacquie?”.  295 of pain and sorrow that leaves us feeling as though the world will never be right again.  A year ago, Jacquie was home, with us, where she belongs.  The results of the bone marrow that she had had done on June 20th were in and Jacquie was in remission!!! That meant that Jacquie would be ready to face her next hurdle, the second transplant.  We were so thankful that the second attempt at chemo had worked.  When she returned from Sloan Kettering in May, and was re-admitted to Roswell, the first round of chemo did not put her into remission, and we were told that the next round would be the last attempt.  We knew her body could not take much more and that Jacquie needed the second transplant to save her life.  So, the news that she was in remission and could go home for a few days put us over the moon.  We were so very excited to have her home, in her own room, with her own things, with Shelby, with us.  We were 4 again. We were as we were meant to be.  We made plans for the house, the yard, and for our future.  We made plans for the rest of Jacquie’s life.  We made plans BELIEVING that Jacquie would be home again after the second transplant.  We BELIEVED it with all of our hearts, and with all of you.  We couldn’t believe that the outcome would be anything but what we knew it must be.  How could we have been so wrong? While in NYC, and at Hope Lodge, Jacquie and I met, and became good friends with, 4 couples who were also in NYC for treatment of cancer or leukemia.  Greg and Laura, Owen and Kathy, Ian and Helen, and Victor and Joan.  All the men were the ones that were fighting the illnesses, their wives were the caregivers fighting with them.  We became close with them; sharing fears, problems, trial and errors, relapses, hope and dreams.  When were had to leave so suddenly, a small part of Jacquie and I wanted to stay with them.  The men understood Jacquie, how she felt and what she was going through, in a way that none of us could- no matter how badly we wanted to.  And the wives could understand me and what I was dealing with, because they were living it too.  So, in a way, they became our support systems, more than the hospital staff could.  The day we left, we all decided we would plan a reunion in one year, when the 5 of them were in remission and well on their way to good health.  Jacquie and I knew, as I’m sure the others did, that there was a very good chance that our reunion might not happen.  We never thought that it was because Jacquie, or any of the other four, wouldn’t be with us.  Jacquie was the one who was going to take care of planning the menu and the drinks.  How could it be that Jacquie would not be at the reunion the other four couples would be attending. We just thought that it would be difficult to find a time that all of us would be able to get away to meet up.  Our Jacquie was the first leave us, so soon after we made our plans.  Then I heard from Joan that Victor had died.  I felt as though another little part of me was gone.  It wasn’t supposed to be this way- Jacquie and Victor were needed here!  This past week, I heard from Helen.  Ian passed away on June 14th, back in his country of Trinidad.  She took him home to be with his family and friends.  I feel so sad,  I feel as though this is going to be a continuing heartache, losing those special people we have met along this nightmare of a journey.  It is still so hard to realize that Jacquie is never coming back.  To have to know that our friends are going through the same pain and sorrow is very difficult to deal with.  I want to be able to help them, but I know I can’t.  I know there is nothing to say or do that will make things right again, or even make things better.  The pain and sorrow become your life.  Sadly, even if there were some way I could help, I wonder if I would be strong enough to.  I can’t even fix myself or my family or friends, how would I fix anyone else who had experienced the same loss?  Please, say a prayer for Greg, Owen and all the others who are still fighting and winning against that horrible disease that has taken a part of our lives from us.  Don’t let a day go by without taking a few minutes to remind yourself to BELIEVE that someday there will be a cure. Yesterday, thousands of people came out for the Ride For Roswell, to help raise money to find a way to make a cure possible.  Jacquie, you must be so proud of your brother and dad for putting together a team of over 85 riders, 50 more than last year, to ride on the Jacquie For A.L.L. Team.  Your family and friends came out to ride in memory of you- to honor your life and let you and the world know that you are not forgotten and that you continue to inspire and change lives.  So many people were there for you, for your spirit and for your dream.  The teams goal was $20,000 this year, up from $13,000 last year.  So far, with money still being counted and donated, the amount is over $20,000!!!!!! They will continue to take donations for a few more weeks, and then final numbers will be in.  So, we really don’t know exactly how much, but Dr. Wang is going to be very proud of you for having raised so much money for her research.  Someday, when there is a cure for your type of leukemia, people will remember that Jacquie Hirsch played a huge role in making that possible.  You have given all of us the strength to keep fighting your fight, and we will not stop, just like you never stopped fighting, until we make your dream come true.  We are so honored and humbled by the family and friends who were there for you, there are no words that could adequately convey our sincerest thanks and appreciation. And to those of you who have just met our Jacquie at the race yesterday, you are right she was, and still is an amazing person.  You would have loved her as we all do.  And as you could see from the number of people there for her yesterday, support for her, her foundation, and her dream continues to grow and inspire.  Thank you to everyone who rode, volunteered or stopped at our tent to see us and to say hi, it meant a great deal to us.  Again, you have let us know that we are not alone. To our wonderful Team In Training Philadelphia Triathalon Team- Ashly, Renee, Klye, and Lindsey- To you we send our heartfelt thanks for your months of hard work, dedication and training so that you may compete in this event in honor of Jacquie and her life.  We know that Jacquie was with you every step of the way today, and is greatly honored that you celebrated her life this way.  We all know that Jacquie so so proud of you. Torey, TJ and I want to thank you for letting the world know that Jacquie was special to you and that you have not forgotten her.  We send you our congratulations and our love. “A daughter needs a mom to teach her that although the future is uncertain, you still need to plan, hope and dream.”  My Darling Daughter Jacquie- every day I when I wake up, I am reminded of the dreams and plans that you had for your futrure that will never be fulfilled.  It makes me sad.  It makes me angry.  It makes me hurt with a pain that makes me cry.  It makes me wonder how you could have been taken from us with still so much to do, so much to accomplish and so many people who love you left without you.  How could we not have been allowed to watch you become all you were meant to be?  How could you not be here to share your hopes and dreams with the little minds and bodies in your kindergarten classroom?  Why were you not able to have a future?  I know what your hopes and dreams were, I just don’t understand why they were taken from you, from us, from your family and friends, from the world.  I miss you, my Jacquie.  I go through every day because I have to, doing what needs to be done.  But you are always in my mind and in my heart.  Please stay here, with me, don’t leave me.  You will always be my daughter.  In my heart  I still have 2 children and we still are 4, the way we always were, the way we are meant to be.  I will love you forever and ever and always, and even longer, my daughter, never ever forget that.  Love, your mom


June 21st 2009 – 288 Days. And today is Father’s Day.  And yes, another “first”, Torey’s first Father’s Day without Jacquie.  Last Father’s Day, Torey and Jacquie talked about spending this one taking a motorcycle ride and going to breakfast.  Jacquie loved being on the bike and taking trips with her dad.  She had a really cute Harley Davidson leather jacket that she would wear when they went riding, and she looked great, always smiling.  The two of them would ride with Casey and Nicole and their dads to different places each time they went out.  Jacquie was really looking forward to the ride this year.  So was Torey.  But now, just like with so many others, these plans will never happen.  Jacquie and Torey will  not be taking another father/daughter motorcycle ride again. Jacquie’s leather jacket is hanging in the closet, just like she left it, waiting for her. The bike was just one of may wonderful things they shared.  Jacquie had Torey wrapped around her little finger the moment she was born.  Now, I’m not saying he spoiled her or anything like that, but she did manage to get her way with her dad more often than with me.  They had a wonderful relationship, and Jacquie never doubted how much her dad loves her or how proud he is of her.  When we were in NYC, she missed him and TJ so much, and would be so excited when she knew they were coming to stay for a while.  After the first transplant failed and we knew she would need a seccond one, she told me that she didn’t think she could go back to NYC for the second one.  She said she needed to be at home with her dad and brother.  I sometimes wonder if she knew that her time was precious.  Jacquie thought her dad hung the moon, and he thought she lit up the sun.  Torey is a wonderful father, and TJ and Jacquie knew that they had the best dad in the world.  He loves them with all his heart, and more. On this day,  I wish for all the dads to know how important they are to their children.  How children look up to them for guidence, and learn from them by example.  As a dad, you may not be able to do many of the things a mom can, but your role is just as importaqnt.  You can help your children learn to respect others, to work hard for the things they want, to care for others and to always be considerate of others feelings.  You can show them that nothing in life can be obtained without hard work and commitemnt, and that is important to set goals and to always keep reaching to acheive them.  You can tell them you are proud of them when they have accomplished something wonderful, and you can help them learn from their mistakes without criticizing them, when something has not gone quite right.  You can  let them know you will be there for them when they need advice, even though they may not always listen to what you have to say.  And, most importantly, you must love them with all your heart, so they learn what love is.  Being a dad is the most important job you will ever have.  The pay is not always great, but the benefits are what you will live for, because there is no greater gift yu will ever be give, than your children. My Jacquie, I have started and re-started this update many times in the past hour.  I keep writing about the memories I have of things your dad has done with you and TJ in the past.  But every time I write a memory, I erase it, because for now, those memories are ours.  Someday in the future we will share them, but not now.  It hurts too much to remember all the times that were “the last time we….”. So, my sweet girl, for now I will say goodnight.  “A daughter needs a mom to always kiss her goodnight and good morning”.  I will be wherever you are, and you will feel my kiss, and my touch and you will know my love for you.  Please stay with us, and give your dad a little special gift on this very difficult day without you.  And Jacquie, please come and visit my dreams soon, I need to see you again.  I love you forever and ever and always and more than that, love, your mom


June 20th 2009 – My Darling Daughter Jacquie- It has been a difficult few weeks and I see no end in sight soon.  I miss you so much.  These past few weeks I have had to spend so much time at the gym, and I miss being at home with you.  I don’t like not being able to talk with you and be near you and your things.  I am very angry at Rachel, and resent her for what she has done, and how it has made me have to leave you.  I wish so hard for things to get easier so that I can go back to spending my time with you. I can’t talk to you or sing to you or cry for you when I am at the gym.  So many people tell me it’s good for me to be back to work and getting out, but I don’t want to be.  I still want to be home with you.  I am angry that the choice is not mine to make, and I feel as though my time with you has been taken away.  I am not ready to “forget and move on”.  I need more time. Tonight I went to Lucy’s first dance recital.  I cried on the way there, remembering your excitment the day of your first dance recital at the Mullen Sisters School of Dance.  You had such a cute little pink costume with a huge tutu that made it hard for you to sit down.  And your dance number was about a doll, and each of you little girls in the class had to bring your favorite doll from home to carry on stage and dance with.  You were so very cute, and even then, you had a smile that lit up the auditorium and made everyone smile with you.  And every year after that, your recitals became part of our June ritual.  The costumes, routines, bows, painted shoes, hair spray and make-up were all part of the wonderful fun and incredible memories.  We have all your dance pictures with you in all your different costumes hanging all over the house, reminders of your love for music and dance.  I hope you watched Lucy tonight- she looked so cute, and did so well.  Again, I cried.  You should have been sitting in the seat next to me, and you should have been the one to present her with the bouquet of flowers after her dance.  You should have been the one to tell her how proud you were of her.  You should have been the one she hugged and kissed.  You should have been there. I hope you have been giving your friends signs that you are proud of them and honored that they have been doing so much to help raise money to find a cure for cancers and leukemias.  Caroline (marathon in Nashville), Brooks (San Diago marathon), and Brittany (Lake Tahoe cycling), have all competed for you and have been inspired to do so because of you.  You continue to give friends, and strangers, the will and the strenght, to push themselves past their limits to help make a difference in our world, they are following your example.  Those you inspire, will someday be the reason that there is a cure. Welcome back, Mike, we have missed you and are keeping you in our thoughts and prayers that your recovery continues to be quick and uneventful.  Please say a prayer for Sandy and Shirley. Jacquie, TJ did an interview for the Ride For Roswell that is going to be on TV next week.  Oh, you must be so proud of your big brother.  He is working so hard for you, he wants so badly to always have everything just right- he tries to have anything concerning you or the foundation just perfect.  I can’t wait to see the interview, it is with Rob Ray and Reuban Brown.  I know you couldn’t have asked for a better, more caring or more loving big brother than TJ.  He will always make sure that you have the best of everything, just as he has always done.  We all will. Tomorrow is Father’s Day.  I will write tomorrow, but for now, I can’t seem to go on.  My heart and my mind know what tomorrow will be like for your dad, and I know there is nothing I can do to take away the pain.  My Jacquie, sleep well with the other angels.  Watch over us, and watch over all our firends that we have met along your journey.  I know you are here with me, but I still need to beg you not to ever leave me.  I can’t do it without you.  I love you, my Jacqueline Elisabeth, forever and ever and always, and longer than that.  Love mom


June 14th 2009  – I sat down to write last night, but I couldn’t.  It was Day 280, 40 weeks.  And it was another day we had big plans for, one year ago.  Nichole, one of the “Ciao Bellas”, asked Jacquie to stand up in her wedding with her.  The date was to be June 13, 2009, and the dresses were green and beautiful.  The card from Nichole is still on Jacquie’s dresser where she left it.  Jacquie was so excited to have been asked to share in such a special event.  It was hard to “Believe” that the next phase of their lives would be starting with the first wedding the the group.  So much excitment and plans to make.  When Torey and I recieved the invitation for the wedding, we cried.  We cried because we were happy for Nichole and Billy.  We cried because our Jacquie would not be here to share their wedding day.  We wanted to be able to go, to see one of “our girls” be a bride and become a wife.  We wanted Jacquie there.  We decided we would go to the church, but not the reception.  Nichole looked so beautiful- just like a princess.  And she was so happy, she was glowing.  We could feel the happiness all around us.  And we could feel our hearts breaking again.  Whe the music started and her dad walked her down the aisle, I asked Torey if we could leave.  I think he wanted leave, as well.  I watched his heart break as he was thinking that he will never walk his little girl down the aisle, and hand over her care to a man who loves her with all his heart.  Torey said we should stay, that we could make it through the ceremony, because Jacquie was in the church with us.  He said there is no other place she would be on Nichole and Billy’s wedding day.  So we stayed, knowing that Jacquie was smiling down on them and wishing them a lifetime filled with  happiness, good health and never-ending love.  After the ceremony, we had a chance to see them before they left for the reception.  When Nichole hugged me, I knew we had made the right decision to stay.  I could feel Jacquie helping me, making me strong enough not to scream at the unfairness of it all.  Being with the Ciao Bellas was sad, but at the same time, so needed. The book that I have been quoting from so much has one quote that reads “A daughter needs a mom to help her on her wedding day”.  I can’t help Jacquie, there will be no wedding to help her plan, no wedding dress to help her into.  There will be no photos with the two of us, sharing a very special time.  There will be no walk down the aisle with her dad, and no father/daughter dance.  There will no be place in her wedding party for her big brother, no future husband for T.J. to decide if he was good enough for his sister.  I thought to myself, how very blessed Nichole’s mom is, to be sharing such an incredible time with her daughter.  And I envied her.  I was even angry- not at her, but at everything that Jacquie has been denied. Everything that we all have been denied.  And I am still so very sad that My Jacquie will never be a beautiful bride, a wife and a mother.  Time will not take away the pain of what we have lost. Time will not bring her back. Please say a prayer for Jacquie’s friend, Shannon.  She is fighting so hard, and she needs our love and our prayers to keep her moving toward remission.  Shannon, don’t give up!  We all BELIEVE in you and that you will make it through this. My Jacquie, my daughter, my BFF.  Thank you for your strength yesterday.  I know I have asked many times for you to stay with me and help me, but never before have I felt you so close to me- holding me up.  You are so desperately missed, and everywhere we go, there is always an emptiness where you should be.  There always will be.  I will love you forever and ever and always, and longer than that.  I love you, your mom


June 8th 2009 – Day 275. And still, it doesn’t seem real.  The days move forward, life goes on, yet we are standing still.  We are waiting.  I don’t even know if we are sure what we are waiting for.  Maybe we are waiting to wake up, maybe we are waiting to go to sleep.  Maybe we are just waiting to see if we can make it through another day without our Jacquie.  I have had to spend more time at the gym recently, and it is very hard to be there without Jacquie, especially because I spend almost all my time in the office/”Tink’s Pro Shop”.  It is just more more place that holds memories of what was, and what Jacquie had planned for it to be.  Plans that she will not be here to carry out.  And although we are all trying to fulfill her wishes and plans for the pro shop, we keep looking for Jacquie to guide us and tell us what she wants us to do.  Our world has become a place where we make many of our decisions after asking ourselves “What would Jacquie do?” or “What would Jacquie want us to do?”.  Many times I am afraid to make a decision because I don’t know for sure what she would want me to do, and I don’t want to make the wrong decision and disappoint her.  I need so badly for her to talk to me.  I need to hear her voice.  I need to have her wisdom and her guidence.  I need to have her here with me. “A daughter needs a mom to remind her to be playful, no matter how old she is”.  My Jacquie, I miss the times that we “played” together.  The fun we had doing little things that meant so much to us.  Special times that we shared that made our memories priceless.  Times that we thought would go on forever.  Now, I have the wonderful memories of us, but will not have you here to make more.  I will continue to do fun and “playful” things with you, in my dreams.  We will laugh until we cry, and we will both know that our mother/daughter relationship is so very, very special.  We will share secrets and give each other advice, and we will always know that we are eachother’s BFF.  My Darling Jacquie, I miss you every minute of every day.  My heart hurts for wanting you here with us, and my mind knows that I will not be complete without you. Jacquie, please watch over Michael, and help him to recover quickly, he misses you so much. I will love you forever and ever and always, and longer than that.  Love, your mom


June 4th 2009 – It seems as though I am always counting, and the numbers are usually not happy ones.  When Jacquie was sick, the numbers would indicate how she was doing, how hard her body was fighting and how well it was responding to treatment. We counted days left of chemo, days until the start of radiation, days until the first, and then the second transplant, days spent in the ICU, the days left until she could come home, and then the days left at home until she had to back into the hospital.  Always counting, always watching the numbers.  And then the unbearable numbers, the days she she had to leave us. As day number 271 is coming to a close, I am trying to remember what I tried to teach Jacquie while she was fighting for her life. “A daughter needs a mom to remind her to always count her blessings”.  I need to remember that along with the painful and difficult to deal with numbers, there are some good numbers too.  For instance, one year ago yesterday, I know it was a “good” day for Jacquie, because our friend Jim brought lobster to Roswell for Jacquie to feast on.  Oh- what a wonderful time she had eating that huge lobster.  There was so little that appealed to her at that time, because of the chemo, so watching her eat was such a great thing to see.  Her birthday last year, was another incredible number to remember.  She turned 23 years old, surrounded by so many family and friends who love her, and came down to Roswell to celebrate her special day with her.  Her 24th birthday this year brought pain and incredible saddness.  Today, I read the posts on her website from the last week, which until now, I have not been able to bring myself to do. I also read some cards and letters that people sent Jacquie for her birthday.  And as I read what people wrote to Jacquie and to us, I began to see that the blessings we have to count, are so many.  The number of family and friends who texted, e-mailed, posted and sent cards, flowers and letters was unbelievable.  This time, as I thought about numbers, the tears they brought to my eyes were tears of joy and gratitude.  It was easy to see that Jacquie’s life brought so many people into our lives to help us through our grief, and if Jacquie was able to count her blessings, we should all be able to do the same.  She always believed that she must be someone very special, to have been able to have so many wonderful and caring people in her life, to help her on her journey.  She knew that her family and friends would be there for her, and then for us, when we would need them most.  And she was right.  She was the most special “angel on earth’, and the blessings she left us, will be with us always. Our “angel in heaven” will always remind us to see what we have, not just what we have lost.  My Darling, Wonderful, 24 year old Jacqueline Elisabeth- your birthday was not what we planned, and I did not do well this past weekend.  But I am trying to remember to count my blessings, and the blessings you have given us.  I know I will not be able to “get over” your leaving us, and I know that the hole in my heart will never heal.  But I will keep trying to learn what you wanted to teach us, and to remind myself that you are the teacher because that is what you were meant to be.  My Jacquie, I will love you forever and ever and always, and longer than that.  Stay with me, don’t leave me, I can’t do it without you.  Love, your mom


June 1st 2009 – It has been a long time since I have made an update. Sharon has asked me to do the honors as she found it too difficult to find the words after having to experience Jacquie’s birthday this past Saturday, the first with out Jacquie here.  This past Saturday was Jacquie’s 24th birthday, the first time we would not be celebrating this very special day. In the days and weeks leading up the Jacquie’s birthday I found myself wondering how and what would we do. It had always been “Jacquie’s Day” as were many of the days throughout the year were. She always gave us something to look forward to and she made days so wonderful by making us laugh and smile as if that was the only way to go through life. Last year we celebrated her birthday at Roswell. We filled the peds floor with family and friends, it was a wonderful day. It didn’t matter that Jacquie was missing her beautiful hair, that more chemo was being pumped into her (as if she hadn’t had enough already), it didn’t matter that she wasn’t feeling her best or had alot on her mind because she was fighting for her life now that the first transplant was unsuccessful and the leukemia was back, in her typical Jacquie style she set it all aside and made each of us laugh and smile and most of all gave each one of us a sense of pride that this special human being was “our” daughter, sister, granddaughter, niece, cousin, or “my” friend. Being with her even under the most difficult of times was still the only place anyone would want to be. I again learned alot from this wonderful teacher that day, by just watching her be with family and friends. The 30th was one of the most difficult days I have experienced. Jax gave me some help the night before as I sat on the bench at the gym near her foundation wall talking to her. I would like to think that “we” decided I would pass out balloons to our Saturday classes and team. I told the children it was a special Jacquie balloon in honor of her birthday, and they were to make a special wish for themselves today. Some of our team members released the balloons at the end of practice just as they did 38 weeks ago, the day you left us Jax, I hope you again saw them. Alot of balloons went out of the gym on Saturday Jax. I went down to Roswell after that to give blood. TJ and Rachael were there earlier in the morning to give blood and drop off some momory bears to children on the peds floor. I made the rounds at Roswell to drop off invitations to the TinkerBAll to the many floors and services that took care of you. Mom stuck close to home and your Tink room for the day, being as close to the things near and dear to you brings all of us some comfort, especially Mom. We had a quite dinner together.  Tj managed a couple good one liners to make us laugh. We were very grateful for the many cards, text messages, flowers, and special gifts from family and friends remembering this special day. From the bottom of our hearts we Thank you all. As I mentioned in a post, Jax from that very first day 24 years ago Saturday, you had me wrapped around that tiny little finger of yours and in my heart forever. I miss you so very, very much, we all do. At times of great sorrow, TJ gives us words of thought about you as only he could, that is, he will and we can as well, live by your heroic and determined example that you courageously set for all of us. Keep watching over us Jax and you can be sure I’m working my hardest on some of your wishes. I will always love you, Dad