October 2009

October 29th 2009 – I needed to be on the website today.  Most days it is hard to read the messages that friends and family leave, but today, I needed to know that Jacquie is remembered.  I miss her, and I don’t know what to do.  I just want to be home, here with her, and I wish I never had to leave the house.  I wish I didn’t have to go to the gym school to work, or go grocery shopping or to the bank, or any of the other “normal” things that need to be done.  I just want to be with Jacquie. My Daughter Jacquie,  I love you so much and I miss you so terribly.  I know I am not the only parent who has ever lost a child, but I don’t know how others do it.  The reminders are so constant, and I wish that they were all good ones.  But I still see the way you fought and the way you suffered and I am so very, very sorry.  I sing to you each morning, and I talk to you alll the time, but you aren’t here to sing with me, or to talk back with me.  What will I do without you?  I will love you forever and ever and always, and longer than that.  I will love you with every beat of my heart and every breath I take. Love, your mom forever. 


October 25th 2009 – This past Thursday, Torey, T.J., and I went down to take a tour of Kevin Guest House.  This was the country’s first hospital hospitality house, and it is here in Buffalo, within walking distance of Roswell Park Cancer Institute. We had heard about it, and wanted to see what it was like and how it operated.   Mr Zimmerman, the Executive Director, spent a great deal of time with us, giving us a tour, explaining how it runs, and telling us about the history of the house and how it came to be.  It is set up similar to a  Ronald MacDonald House, or Hope Lodge, and offers very inexpensive lodging to patients and their families while they are in Buffalo at local hospitals for treatment.  As we toured and talked, I couldn’t help but remember the times we spent with Jacquie in New York City, twice at the Ronald MacDonald House, and our very long stay at Hope Lodge.  It reminded me of the first stay at Ronald Mac  Donald, and how depressing the place seemed to us.  It was old, and tired and worn, and although much effort had been put into making it colorful, cheerful and children friendly, it still needed to be updated.  We were told they are hoping to be able to rennovate or even build a new one in the future.  I hope they are able to, because the place was so depressing, that even with all the children there, Jacquie said she didn’t think she would be able to stay for for the many months she would have to after her transplant.  Torey and Tj continued to look for an apartment for us to live in and we wondered where we would stay if they couldn’t find one.  Then we were told about Hope Lodge, and once Torey saw it, he said evverything would be ok.  It had just opened 4 months before we arrived in NYC, and he said it was perfect.  When Jacquie and I arrived after her discharge from MSKCC, we were so happy to be staying there.  Everything was fresh and new and clean, and I could stop worrying so much about germs and infections.    Better yet, we had our own bathroom, we didn’t have to share with anyone else.  The bedrooms were big and bright, and we even had two closets (Jax was happy about that, because she would have someplace to put all the clothes, shoes and Veras she was planning to  buy).  It wasn’t the same as being home, or even at Roswell, but Jacquie would be comfortable there, and that is all that mattered.  Hope Lodge gave her peace of mind.  We became friends with many of the people there. Jacquie was able to talk with the other transplant patients and know that they really understood how she was feeling, physically and emotionally, because they were going through the same things.  For me, it was wonderful to have other caregivers to talk with, especially when Torey and TJ couldn’t be with us.  I found myself constantly being thankful that there were places like Hope Lodge that could provide for patients and families.  The Buffalo Hope Lodge, Ronald MacDonald House, and Kevin Guest House are trying to provide for the need here in Buffalo, but like everywhere else, they need help from the community.  Jacquie’s Foundation will be making a donation to Keving Guest and we are hoping to sponsor a “room rennovation” in the future.  We know what it means to have a welcoming place to stay, and we feel the need to make a difference for the patients and families. It was sad being there, remembering our stays, and dealing with the memories of what was.  Jacquie was such a strong person, she didn’t want to have to go all the way to NYC for the first transplant, but she knew we had to and she made the best out of it.  Her family and friends let her know she was never alone or out of their thoughts and hearts, and Jacquie gained strength from that.  She was incredible, and we are so proud of how she handled being so far away.  Our Jacquie gave us strength when ours was fading. My Sweet Daughter Jacquie, The pain continues, the days are long and nighttime doesn’t come soon enough.  This month had been busy, honoring you has kept all your family and friends on the move, with many fundraisers for your Foundation.  Dr. Wang is going to be very happpy to have more funding to find a cure.  She is working very hard for you, and we know how much she would love to have you be part of the cure.  Please stay with me,  I need you more than ever, and am findng it hard to keep going.  I can’t seem to get things done, and don’t have the energy or the desire to do anything.  I need a little push from you, just like I used to give you when you were having trouble getting going.  So, if you can, let me know you are there because I could really use a sign from you.  I miss you so much, whoever said it would get easier is wrong, right now it is getting harder.  I love you, my Jacquie, and I will love you forever and ever and always, and longer than that.  Love, your mom

October 19th 2009 – Another weekend over.  Another weekend without Jacquie.  Another benefit for someone fighting for her life.  We went to Kathleen’s benefit yesterday down at Holiday Valley.  It was filled with people, just like all of you who read this.  People trying to help, trying to make a difference, and BELIEVING that someday benefits to raise money for leukemia and cancer victims will no longer be necessary.  Kathleen was diagnosed in January of this year, with ALL, she is 27 years old.  The benefits bring back the questions that are always lingering in my mind.  Why?  Why Jacquie?  Why anyone?  Why isn’t Jacquie here with us to go to her benefits, the way Kathleen is?  Why are so many not able to go to their benefits?  Why are so many walking around with holes in our lives?  Why?  I saw such hope and love in that room yesterday, the same hope and love that I saw at Jacquie’s first benefit.  There were hundreds of people who BELIEVED that Jacquie would win her fight, that she would be “OK”.  The same belief filled the room yesterday.  Kathleen will win her fight.  She will live to continue to raise funds and awareness for research, and she will live to fulfill her dreams and write her book- “The Pink Boxing Gloves”.   Why couldn’t Jacquie live to fulfill her dreams? “A daughter needs a mom to show her how to put a little love in everything she does”.  Did I do that for you, my Jacquie?  I hope I did.  It seems that all the people who support you and your Foundation, must have known love from you, or at least known the love you had to give, because they keep coming to your benefits and fighting for your dream.  You must have shared your love with so many people, and now they want to return some of that love to you.  What an incredible testimony to your life and the way you lived it.  I will never stop wishing that we never had to find out the extent of your impact on so many people, I would gladly have lived the rest of my life not having to know how much you would be missed if you were no longer with us.  The benefits we hold in your honor, or attend in your memory, give us an opportunity to see how you lived your life through the eyes of your family, friends, and “friends not yet met”.  And the life we see was so very special.  We know that what you accomplished in your 23 years is more than most people accomplish is a full lifetime.  It makes me wonder what more you would have done with your life had you not been taken from us so soon.  My Jacquie, I  know you know that I love you and I miss you.  I know you know that it is so hard living without you. And I hope you know, that I am trying.  Never forget that you live in my heart, in your own special place that is your home.  I love you now and forever and ever and always, and longer than that, my very special Angel.  Love, your mom


October 13th 2009 – I laid in bed this morning and asked myself “why should I get up?’  I knew I should, I have so much to do- at work and with Jacquie’s Foundation, but somehow, it didn’t seem to matter today. I know that if I stay in bed all day, the work will still be there tomorrow, or the next day or the next day, or until I do it.  If I stay in be and sleep, I don’t have to see the empty spaces in my life, and I don’t have to hear the sounds and the voice that is missing.   I don’t have to wonder if it is Jacquie calling when my phone rings, and I don’t have to remind myself not to ask if Jacquie will be home for dinner.  I know it has been 401 days since Jacquie was taken from us, but I still think about those things all the time.  It is as if the world has moved on, but time for me has stopped, and my mind and heart still refuse to believe that she won’t call or be home for dinner.  I still have to stop myself from going into her room to see if she has wash she wants me to throw in with ours. I have to make myselfnot go into her closet and look at all the clothes and shoes she will never wear.  I hold her “Jacquie” bear to my heart, and I wish I could feel her heart beating mext to mine.  I sleep to avoid the reality of knowing that my Jacquie will not share anymore of her life with us, or any of the hundreds of other people who  knew and loved her. But then I remember why I have to get up.  I owe it to Jacquie to keep going, the way so many others are doing for her.  The “Dancers Give Back” benefit on Saturday was incredible, I wish Jacquie could have been there next to us, to see what a wonderful event Mary Alice’s Dance Studio and more than 30 other studios put on for Jacquie.  Along with so many dancers, parents, volunteers and donors, they astounded us with the amount of support and love for Jacquie from so many, most of who had never met her.  Just as Larry did with the “Clinic For A Cure”, and Maryanne did for “Jamming For Jax”; Mary Alice, Ali and A.J. proved that love never dies, it just grows stronger.  Each and every benefit, donation, or purchase from the foundaation or “The Tink Shop”, shows how much Jacquie’s life has impacted so many people.  If I stay in bed, I dishonor Jacquie’s memory and the efforts of all those who continue to keep her memory alive.  I wish I could stay in bed forever, I wish I didn’t have to face each morning knowing Jacquie will not be next to me.  But if I stay in bed, I can’t draw strength from all of you who give so much of yourselves for Jacquie.  I wouldn’t be able to let you know how much your efforts mean to us, and I wouldn’t be able to face myself if I let Jacquie down.  That is one of my biggest fears- letting Jax down, or having her think that she is not worth getting out of bed for.  Jacquie is worth the sun, the moon and the stars, so getting out of bed to face the day without her is a small price to pay for what she gave us all while she was here with us.  I realize that I keep saying this, and probalby very poorly at that, but thank you.  Thank you for loving Jacquie and thank you for continuing to support our efforts to find a cure.  The Vera  Bradly Party is coming up in November, on the 20th, and we hope to show Jacquie that even though the company didn’t use her name for one of their items, we all consider the company’s name to be “Jacquie-Vera Bradley”.  We will not let her down. Please continue to pray for Pat, Kathleen, Shannon, Owen, Greg, and all the others who need us to find a cure, we HAVE to find a cure. Thank you Jill, for the MSKCC marathon. My Jacquie, as we work to make your Foundation a big name in funding leukemia research, please remember that there is never a moment that we don’t ask ourselves “why isn’t Jacquie here with us?’ Every event we host, sponsor, or that is done in your honor, is a reminder of your dream and why we are doing what we are doing.  We all miss you so very much and we have such a hard time being without you.  Please stay with us, show us you are near, and guide us to be the people you want us to be.   I will love you forever and ever and always, and longer than that, my Jacquie. Love, your mom

October 7th 2009 – Dear Jacquie-  I sat down to write because it has been a while since i have written on your web site, and I was surprised to see that someone had posted yesterday.  I began to read, and as I did, once again I started to cry.  I read TJ’s words, and it made my heart ache for the pain and sorrow that those words represented.  I know that you understand how much TJ loves you and misses you, but I don’t know if you can understand the depth of his committment to you and your Foundation.  So much of his life is now spent making sure that you live on in everyone’s minds and hearts.  He is dedicated to finding a way to make your dream come true, and his determination is an awesome sight to behold.  It makes me wonder how could you have been taken from us, from your brother, when the bond of love was so strong and so true.  There could never be any doubt that the two of you represented what sibling love should be. Some days, where he is so stresses about the gym, his new business, and all the work there is to do  for the Foundation, I worry that he will not be able to carry all those burdens for too much longer.  And then I watch him as he pushes forward, dealing with issues and problems and timelines, and I know that he will not break.  He is strong, just as you are, and he will do whatever it takes to get the work done, and to make sure that everything for you is perfect.  I know how much he wishes you were here to share this time with him, to share in the plans the two of you made together. But I also know that you are with him, guiding him and helping through these very difficult times.  I know you will keep trying to help hime through the problems with the businesss, and you will let him know, in your very own way, that he is not alone, and he never will be. I have said this before, and I will probably say it many more times, I wish that all little girls had a big brother like you.  Every little girl should have a TJ to have fun with, to teach her, to guide her, to be her “sentinal”, to protect her, and to love her.  You are everything a big brother should be, and Jacquie knew that every day of her life, and she still knows that now.  Thank you, TJ for being the man you are, the son we love and are so very proud of. We want to thank all of you who are honoring Jacquie’s memory by participating in the many upcoming Foundation events.  The Light The Nights, marathons, the clinic, Jamming For Jax, Dodge Ball, Dancers Give Back all could not be possible without the hard work of so many and the people to attend and support these events.  In my heart, I know we need to keep doing these events because this is what we do for Jacquie.  But I wish there was no need for them. Please say a prayer for Pat, he and any others need to know we are standing beside them in their fight and they are not alone. My Jacquie, my Darling, I am holding you closer these days because I feel if I stop holding you tight I will shatter.  TJ is right, the fall is a very difficult time of year.  You are not here to share the colors of the trees, the cool nights, or the little children in their Halloween costumes that you enjoyed so much.  Don’t leave us, your place is in our hearts forever, and you must never leave stop giving us signs that you are near.  We need to know that we are not alone, you are our “four”, and you complete our circle.  I will love you forever and ever and always, and longer than that,  Love your, mom

October 6th 2009 – Dear Jax, I really don’t like this time of the year. Fall. The leaves are falling, the temperature is falling and in general, it just reminds me of last year when everything fell apart. After all of us tried so hard, and loved you so much, and did everything we could do. We all really missed you at school. I don’t think it was everything it could have been, and I know it wasnt everything that it should have been. You should have been there. You should have been with us all, celebrating and having fun. It was your standard BW night, and since I like remembering our random tuesday afternoon ward 20/20 session so much, I had one or two on Saturday, okay three. and a half maybe. And in typical fashion, SoCo & lime for you at the IB. It was a lot of fun, but things like that make me feel angry and sad. But in some ways though, I know you’re there. You’re everywhere. I see your smile in all the pictures that are up, I hear your voice in my head, I see Tink in the strangest places, and, I see you, in the way other people live their lives. Its why people can’t forget you, its why everyone tells your story and its why the Foundation has so many events, so many believers and has accomplished so much already. We have 8 events in 7 weeks. Although its a lot of organizing and a lot of work, and so many people help with events, nothing we do ever feels like its enough. Maybe a little in each of us thinks that if we work hard enough, and raise enough money and do enough events, and help enough other people that it will be enough for you to come back. I know thats not the reality, and it can’t happen that way, but it wont stop us from trying, or from making sure everyone knows the brave and courageous story of Jacquie Hirsch. A remarkable, thoughtful, caring and wonderful person. This past weekend at Clinic For a Cure and at Jamming For Jax, so many people came together to make a difference, even if for a day, it just proves how many lives you continue to touch and how people are inspired by the example you set. If you can take time from your busy social calendar, show us a sign next week at Dancer’s Give Back. Mary Alice and Ali have worked really hard to put on another successful fundraiser and we want to know somehow that you’re there. We miss you so much Jax. Every new day that goes by is a day that im farther away from the worst one of my whole life. But if I could go back to that room and hold your hand and be next to just one more time, I would stay there with you forever. Stay close to us okay, we need you and we love you.