August 2009
August 26th 2009 – 354 days. Forever. The day you were born, a star dropped from the sky and lit a flame inside my heart. As I watched you grow, that light inside my heart burned brighter and brighter. It was fueled by my pride in your accomplishments, the joy in watching you live life, the happy times we shared, the memories we made, and by the greatest love a mother can have for her child. This flame keeps me going. I try to remember that I helped to bless the world with the most precious of gifts that could be given, because I gave birth to you. You made your place in the world from the moment you took your first breath. You quickly discovered your own independence and became the much-loved person you are today. I want you to know, that no matter how much time passes, or how far apart we are, time and distance will never dim the light in my heart. The light that is you, will continue to burn forever, and you will always know that you are missed and loved, you will always know your home is my heart, and you will never feel alone. That I have been blessed with two such gifts, you and your big brother, is a miracle, one that I will never understand, but will never question. When it is time for me to be with you someday, I will know that the best part of my time here on earth, was being the mother of Jacquie and TJ. You must know, that nothing will ever change what we have always been and will always be, to each other. My Jacquie, I will love you forever and ever and always, and longer than that. Love, mom
August 21st 2009 – I don’t know what to say or what to write. I am not sure if I even know how I feel anymore. I keep repeating Jacquie’s mantra “We Believe”. I say it all the time, over and over, becuase I really do want to believe, I want to believe that someday we will all be togeather again. But it seems that almost everything else I believed in, I no longer do. I find myself wondering how I can keep believing, when Jacquie was still taken from us. Now, I just don’t know anymore. This past Christmas, we recieved a beautiful photograph of Jacquie, along with a poem, in a frame that we keep on our kitchen counter, so we see it all the time. I wanted to share that poem with you.
God looked around his garden, and he found an empty place
He then looked down upon this earth, and saw your tired face
He put his arms around you, and lifted you to rest
God’s garden must be beautiful, he always takes the best
He knew that you were suffering, he knew you were in pain
He knew that you would never, get well on earth again
He saw the road was getting rough, and the hills were hard to climb
So he closed your weary eyelids, and whispered “Please be thine”
It broke our hearts to lose you, but you didn’t go alone
For part of us went with you, the day God called you home.
My Jacquie, as time goes on, you must know that we miss you more and more. The days are hard, and I count the hours until night, when I can be with you, if only in my dreams. In the dark, I can pretend and I can make believe that nothing has changed. I love you, My Jacquie, more than life itself. We all miss you so much, and our days are spent trying to get through them, knowing you will not be here at the end of the day, with us, where you belong. Please help us,stay with us and never ever forget how very much we all love you. With all my love- forever and ever and always, and more than that, your mom
August 16th 2009 – It is getting harder and harder to write as we approach the 6th of September. At this time a year ago, Jacquie had been admitted to the ICU at Roswell. Her lungs were filled with fluid and she was unable to breathe on her own. She was in a “drug-induced coma”, and the respirator was breathing for her. She was also having the beginning signs of liver failure- the graft vs host disease was destroying Jacquie’s organs. And still, we believed that she would be able to fight back again. It hurt so bad to have her unable to communicate with us, to talk with her and not have her answer back. To not hear her voice and her laughter. Whenever I am out anywhere, and I hear a parent tell a child to be quiet and stop talking I want to scream at them. I want to tell them to let them talk, and to listen to everything their child has to say. I want to tell them how sweet the sound of their child’s voice is, and I want them to know that the silence of never hearing that voice again would be too much pain to bear. I can still hear Jacquie’s voice and I can still hear her laugh, the laugh that would make you laugh with her. I can hear her, but she can’t talk to me. And I can feel her, but I can’t touch her. And I am afraid. My Jacquie, “A daughter needs a mom who needs her daughter”. What will I do, my Jacquie? I need you. There is no part of my life that the memories don’t touch, no part of my life that the your not being here isn’t filled with pain. I am so sorry that we couldn’t save you, that we couldn’t make you better. I am so sorry that you suffered. I am so sorry.
My Daughter Jacqueline Elisabeth, I love you more each day, as I miss you more each day. I know you are gone, but I can’t let you go. Your home is in my heart, and you will live there forever. And I will love you forever and ever and always, and longer than that. With love, heart and soul- your mom
August 10th 2009 – Day 338. It seems like just yesterday, and yet it seems like forever. A year ago, Jacquie was 10 days post transplant #2 and was starting to have some graft vs host symptoms. We knew what complications were possible, but we believed that she woould be strong enough to deal with them. Her body was still depleted from the first transplant, but we believed. Still, Jacquie continued to fight back, eating when she could and walking and excercising when she was able. She was extraordinary, she was, and still is my hero. Each day, I was amazed at her strength and dtermination, in spite of all the problems she was beginning to have. Every night, as I watched her sleep, I woud pray that she woud be able to fight another day, and that Torey, T.J., and I would find the strenght to not fall apart. However difficult the days were, we still made plans for “next summer”. Jax missed being outside, in the sunshine and fresh air. She wanted to swim, play tennis, and “hang out” with her friends. I told her that next summer, she would. I am so very sorry Jacquie, I believed with all my heart that you would be home this summer. You should be home with us now. On Saturday, Jacquie, your wonderful brother held the 2nd “Cruise Against Cancer”. There were 63 motorcycles and cars at the gym, all to honor your memory and to help raise more money for research. We also had a bone marrow registration drive, and added 32 more potential donors to the national registry in your name. There were drawings for prizes, awards for different catagories of cars and cycles, Rick the DJ, a 50/50 raffel, and of course- food! And, we know that you gave us the beautiful weather. Although rain was forcasted, the sun was shone all through the show. When the car show part was over, at about 2pm, the cars lined up and began the trip down to Roswell the present the check for $2300.00. It was an awesome site to see, but your view from heaven must have been incredible. To see all those people, there for you and your dream, was breath-taking, and I cried to know that you were watching it all, but were not next to me. Why are you not next to me, where you belong? We finally met Kathleen, who is so much like you that it hurts. She is newly diagnosed and fighting ALL. I told her we are fighting with her, and because of your dream and your foundation, she will never be fighting alone. We MUST make this world cancer free, we cannot keep having to watch the pain and suffering. We have got to keep going and working harder so that places like Roswell are no longer necessary. I believe we can do this, Jacquie, we have no other choice. Please say a prayer for Dennis, a new cancer patient who needs our prayers and our good thoughts. My Jacquie, my Daughter. As the days continue to go by without you, the hole in my heart seems to grow. There is nothing to fill the emptiness. I miss my BFF, and I miss being your mom. I miss the times we shared, the laughter and the tears, the talks and the arguments, the shopping, the baking and cooking. I miss watching TV with you, and listening to you and T.J. tell me lines from your favorite movies before the actresses or actors said them. I miss seeing you and T.J. together, and seeing the love in your eyes that you had for each other. I miss watching you with your dad, and the way he would light up when he saw you. I miss watching you follow through with plans you made witb your friends and with us. I miss my daughter, the one who was supposed to be here long after I was gone. I miss you Jacquie, and the pain just goes on. Please stay with me, you live in my heart and I will never let you go. I will love you forever and ever and always, and longer than that, my Daughter. With my Love, your mom
August 4th 2009 – Yesterday I was in the basement putting away bins of “Tinker-Ball” things. We have so much for next years Ball that I think we will have about 8 full bins when everything is finally packed away. I didn’t realize how much we actually had, it didn’t seem like so much all spread out at Sean Patrick’s. Anyway, as I was trying to find room for everything, I started to notice all the “Memory boxes” we have. There are ones from all of us, Torey and I have our filled with 52 years of memories. TJ and Jax have theirs filled with baby clothes, toys, books, photographs, awards, school papers and stuffed animals. And next to all of them, are Jacquie’s boxes- 3 of them, two marked Roswell Park and one marked Memorial Sloan Kettering/Hope Lodge NYC. From the time they were born, I kept filling these memory boxes for them, so that someday they would have wonderful stories to tell their children and have things to show them about “when I was little”, and “when I was growing up”. Torey and I shared our memory boxes with TJ and Jax. We would tell them the stories behind the things we had saved, and why they were special to us. And we told them that someday, they would do the same thing with their children, and we would keep our memory boxes for them to share with their children, too. We always thought that someday our grandchildren would hear the stories that we had told our children. And we hoped that they would enjoy them as TJ and Jacquie did. Torey and I also knew that someday those memory boxes would belong to TJ and Jacquie. Now I wonder, what will I do with the special things I saved for Jacquie to give to her daughters? The memory boxes that Jacquie and I went through so many times, and she would tell me “someday, I’ll give that to my daughter, and I’ll tell her the story”. The things she asked me to save, that I thought I should get rid of, like my girl scout hat and my sash with all the badges on it, diaries, and favorite books, what will I do with those things now? Jacquie’s memory boxes, the ones I keep going through and remembering the story behind every item in there. The boxes from Roswell and Sloan, they have everything anyone gave her or sent to her since she was diagnosed. We kept everything. Every card and letter, every drawing and photograph, stuffed animals, medals, rosaries, statues, gifts, books, everything. Because Jacquie knew that someday, she would want her children to know the wonderful people wo helped her through the most difficult time in her life. She would want them to know the names and stories behind each and every gift. We kept the lists of all the gifts she recieved, and they have check marks next to them because she tried to acknowledge the gifts as she recieved them. Jacquie wantd her children to know how much it meant to her that people cared about her. And she wanted her children to know that it made a difference, knowing she was not fighting for her life alone, that she had so many people fighting along side her. Who will know that now? TJ will share his memory boxes with his children, and there are things that he will share with them that were Torey’s and maybe some things of mine, but who will Jacquie share her memories with? Why didn’t Jacquie have a chance to share with her children? Why didn’t Torey and I have a chance to share with Jacquie’s children? WHY????? Jacquie had so much to give and so much to share, why didn’t she live??? I hate that I keep asking questions I can’t find the answers to. I hate that I am angry because Jacquie’s memories are in those boxes and she will never be the one to tell the stories that go with them. I hate that she is not here to fill up more memory boxes. I hate that we all BELIEVED with all our hearts and souls, and yet, she was still taken from us. My Jacquie, My Daughter, I am so sorry that I am angry. I am so sorry that I stayed so long in bed today. I just couldn’t face another day without you. I miss you. So much going on here, and it would be so much easier to get through if you were here with us. We were strong as “four”, and now we are struggling without you. We keep trying but it is hard, and I am tired of trying. Some days, I just wish I could stay in bed forever. I love you, my Jacquie, with all my heart and soul. I will love you forever and ever and always, and longer than that. Stay with me. Please don’t leave me. Love, your mom