May 2009

May 27th 2009 – “A daughter needs a mom to teach her to be thankful for the gift of wonderful friends”.  My Jacquie, as the days pass, I realize more and more how much you gave all of us.  You gave us joy, laughter, tears, wisdom, memories, beautiful smiles,adventures, hopes, dreams, enthusiasm for life, rainbows, your heart and your love.  You also gave us friends.  The friends you made in your very short life will be your friends forever.  They continue to honor you and remember you, they have not forgotten you or what you meant to them.  Each time we recieve a card, phone call, e-mail or text from one of them, I give my thanks to you for bringing them into our lives, and sharing them with us.  I realize many parents don’t always know who their children’s friends are. We always felt so lucky not only to know your friends, but to be able to spend time with them, and do things with them.  Now I know there must have been a reason for that.  Somehow, you knew that someday we would need them, so you gave us a chance to get to know them and love them as you did.  You gave us the gift of your friends to help us through the pain. Your friends have managed to show how much they love you by loving us.  My Jacquie, when we are with your friends, we know you are with us too.  It is so hard to be with them without you there too, but the pain would be unbearable if we didn’t have them to remind us how much you are loved. On this day, I have tried not to cry, and to remember to be thankful that we are not alone.  But as usual, I just want the day to be over so I can go to bed.  I will think of you, and dream of you, and I will hope that tomorrow when I wake up, you will again be with me to guide me through another day without you.  Goodnight, my Precious Jacqueline Elisabeth, I will love you forever and ever and always, and longer than that.  Love, your mom


May 23rd 2009 – Again, the numbers.  259 days, 37 weeks. 365 days ago today, we drove Jacquie down to Roswell to begin the next fight.  She would be starting chemo to get her into remission and ready for her second bone marrow transplant. The night before, we sat and talked.  As we decided what to pack and take down to Roswell with her, we talked as if their was no question that Jacquie would be returning home again when the second transplant was a success.  We were both so happy at the thought that this time she would be spending her  “100 days” here with family and friends, instead of far away in NYC. The morning we left, Jacquie looked a little scared, and uncertain.  I told her “Don’t worry, all your things will be just as you left them when you get home, we won’t touch anything”.  And then I said, “you WILL be coming home”.  I am so sorry Jacquie, I did truly BELIEVE you would.  I am so very sorry. I didn’t know the next time you left here would be the last time.   “A daughter needs a mother to be honest with her, even if the truth hurts”.  My Darling Daughter Jacquie, that was the truth as I BELIEVED it would be.  I told you the truth from my heart.  I didn’t lie to you.  I was so sure.  But you know, that we have left everything just the way it was for you.  I want you never to forget that you will always be here with us, you will always be our “4”.  I will love you forever and ever and always, and even longer than that.  WIth my love- heart and soul, your mom


May 20th 2009 – One year ago today, we arrived home in Clarence Center.  To the new home that Jacquie had spent so little time in.  To the new home that she fell in love with the first time we saw it.  This homecoming, however, was not what Jacquie, or any of us, envisioned it would be.  Because, two days earlier, Torey and TJ made an unexpected visit to NYC.  They had come to tell us, for a second time in less than 8 months, some devestating news.  Jacquie’s Leukemia was back.  She was 87 days out of her transplant, 13 days from reaching th 100 day milestone, and being discharged to go home from NYC.  How could this have happened?  She was feeling good, better than usual.  No symptoms that would indicate that she was about to face another “fight for her life”.  So we flew home as soon as we could.  Not to an airport filled with family and friends holding balloons, flowers and “Welcome home- we love you Jacquie” signs.  But to an empty airport where nobody knew the beautiful, bald young woman, with the infectious smile.  Jacquie didn’t want anyone there.  She said she would wait for when she came home from the hospital from her second transplant.  But that didn’t happen either.  Jacquie never got the homecoming that we all dreamed about and Jacquie deserved. On Sunday, we all went down to Geneseo.  We had recieved an invitation from the President of the College, Christopher Dahl, to be present at the 2009 commencement ceremony.  Jacquie was going to be recieving her Bachelor of Science in Education Degree, posthumously.  The Department of Education felt that Jacquie had sufficiently completed the necessary requirements to be awarded her degree.  We were so honored and proud.  We are sure that Geneseo is one of the few, if any, colleges that would take the time to do that.  At the ceremony, we sat in the front row, and before they began to award the other diplomas, Interim Provost Gordon asked for a moment of silence, for Jacquie and the other two GSU students who had died this year.  After that, he read a short speech about Jacquie, and then Osman Alawiye, Dean of the School of Education, presented us with Jacquie’s framed diploma.  It is dated December 18, 2007, the date Jacquie would have officially completed her student teaching.  Then suddenly,  everyone in the arena stood up and began to applaude.-  Jacquie was getting a standing ovation!  And over the sound of so many people clapping, we heard another- the sound of the sky opening up and pouring rain.  It was so difficult to hold that framed diploma, knowing Jacquie would never hold it.  It seemed so wrong that we were the ones to shake his hand, not Jacquie.  I think that out of all the events we have held and attended in honor of Jacquie since she died, this was by far, the most difficult and the most painful.  We watched smiling, proud parents who took pictures of their children.  We listened to speeches about what the future holds for each of them, the ways that they will contribute to our society, and the positive changes they will make to ensure a better future for all of us.  They spoke of dreams, wishes, successes, hard work and happiness.  The day was filled with joy, and expectations for the graduates, who were anxiously waiting for the ceremony to end so they could start the “real” celebration.  Sitting among the graduates, faculty, guests, and parents, it was impossible to stop crying.  So many emotions just screaming in my head all at the same time- anger, saddness, betrayal, unfairness, envy, and endless pain, and yes, pride and love.  But, as difficult and painful as the day was, we wouln’t have missed being there for Jacquie’s tribute, for anything.  I believe that when it started pouring rain just as Jacuie’s name was spoken, it was Jacquie’s tears from heaven.  I hope they were tears of joy and of pride in herself.  What we know is, that Jacquie left part of herself at Geneseo.  So many people made a point to let us know how much they miss her, and how deeply she affected their lives.  They told us what and incredible young woman she was, and how much they loved her.  She will be missed, and she will not be forgotten.  President Dahl, the Department of Education and all of Geneseo gave Jacquie a gift- her diploma.  They gave us one too.  They let us know that they are proud to call Jacquie a Graduate of SUNY Geneseo.  We thank them all, too many to mention each name, but we hope they know who they are. Kathy E., we owe you so much.  Thank you for taking Jacquie on her journey to making her dream of being a teacher come true.  We will never forget what you have done for her. My wonderful “Miss Jacquie”, we are all so, so, so proud of you.  I know you watched the ceremony and I hope you felt the pride and love from all the people whose lives you touched.  That you have left so much of yourself in so many people tells us what a truly remarable person you are.  You should be as proud of your brother as he is of you.  He works so hard, and keep trying to find ways to make your web site and the Foundation better.  He is always fixing, changing and re-doing something.  He loves you so much and wants to make you proud.  He is still your big brother and always will be.  Your dad and I love you so much and miss you, we think somedays the pain will make us go crazy.  But you will stay with us, keep us going and doing what needs to be done.  I love you, my daughter, and I will forever and ever and always, and even longer than that.  Love, your mom

May 16th, 2009 – 252 days. 36 weeks. Forever. “A daughter needs a mom to teach her to dance to the music, even if she is the only one who hears it, because it is the music in her heart.”  Last night, we went to another special event in which Jacquie was honored.  Spezio’s Dance Dynamics held their end of the year dance recital at Buffalo State.  As is always the case, it is a wonderful recital, and always a pleasure to attend.  This year, our good friend and owner of the studio, Michelle Spezioo Ferm, honored Jacquie with a special dance.  Michelle created a beautiful dance to Alan Jackson’s song “Sissy’s Song”, and changed the title to “Jacquie’s Song”.  Her dancers flowed across the stage as though they were one with the words of the song, and each movement was a reminder of how very much Jacquie loved to dance.  It was so easy to see Jacquie up on  stage, dancing with them, smiling and loving every second of it.  Jacquie danced at Spezio’s when she was young, and always felt an enormous amount of respect for Michelle, not only as a dance instructor, but as a person, and as a mentor.  I know that Jacquie was incredibly touched and deeply honored that Michelle would honor her at the most important event of the studio’s year.  As for Torey and I, once again we struggled with memories.  Remembering Jacquie at her first dance recital at 3 years old, wondering if whe was going to freeze, or actually perform the dance she had been taught.  As soon as the music began, Jacquie “turned on”, and played to the audience.  From that time on, we never worried if Jacquie would freeze in front of an audience if dancing was involved.  Throughout the house, we have pictures of Jacquie in all her many dance costumes from all her recitals.  Last night made us grateful that we were able to give Jacquie the opportunity to dance, and to share her love for dance with so many others.  Those of you who know Jacquie, know that as soon as music came on, some part of her would start to move.  Jacquie was born to move. When Jacquie and I talked about the future, and the children she would have, one thing she would always say was that if she had girls, she would want them to dance.  She would teach them to dance to the songs of the “Sound of Music”, and “Mary Poppins”, Mama Mia, and so very many others.  She loved musicals and was always borrowing her Grama Bree’s tapes and DVDs to watch over and over again.  She had so many of the memorized.  I remember when we were at Sloan Kettering a year ago, and the Sound of Music was on TV.  Jacquie suddenly jumped up off the bed and started to dance to “Doe A Deer”.  Of course, she was exhausted when the song was over, but she made it through to the end.  You can’t imagine what a joy it was for me to watch her dancing again.  I dreamed of the time when dancing would not make her tired.  I dreamed of the time when she would dance at her wedding.  I dreamed of the time when she would dance with her children.  Now, I don’t dream. MIss Michelle, you gave Jacquie a special and wonderful gift last night.  There are no words to express our thanks and gratitude to you and your talented students.  We will be forever grateful for the gift of dance you gave to Jacquie. Jacquie, our own wonderful “Dancing Queen”, we miss you and love you more each day.  Our lives will always have something missing.  Although you are with us always in all we do, and all we are, we are missing your being with us here, where you belong.  We continue to work hard to find ways to make your dream come true.  And we continue to BELIEVE that we will- someday our world WILL BE cancer free.  The emptiness is all around us, all the time.  Maybe you could find a way to fill it, to give us a sign that you are next to us and helping us. Today, we aill all be going down to Geneseo.  We have been invited ther to be prestent at graduation, and to accept your teaching degree in Early Childhood Education.  How unfair it is , that yur will not be the one whose hand reaches out to accept the diploma and shake President Dahl’s hand.  We will be there for you, my Jacquie, today and forever.  Please give us the strength we will need to make it through this day.  I  love you, my darling daughter, forever and ever and always,  love- your mom.


May 10th 2009 – Mother’s Day. A year ago yesterday, Jacquie was re-admitted to Sloan Kettering for a fever and vomiting.  She kept apologizing. She said she felt so bad because for my birthday and then for Mother’s Day, she was in the hospital and we wouldn’t be at Hope Lodge, or home, to celebrate.  I kept telling her that no matter where in the world we were, as long as we were together, that was all I could want or need to make me happy.  TJ and Papa surprised us by showing up at the hospital, and I know that made Jacquie feel better.  They were only there for the day, but it was a wish come true to be with both my children on Mother’s Day. I also had the chance to spend a couple hours with Lou, Erin, Lucy and Emma- we went to the zoo.  I was so hesitant to leave Jacquie, I really wanted to be with her and take care of her.  She told me she really wanted me to go, that TJ and Papa would be there, and that she would be ok for a short while.  I went and worried the whole time, but I was glad I went- it was a wonderful visit and it made Jacquie feel good. It was a good day for all of us, and once again, we made plans for “next year”.  The pain of more plans that will never be, continues to hurt and sadden us, and makes us keep questioning, WHY? Joe B., Thank you for your beautiful message to us all.  It was a wonderful story to share, and although it made me cry, it was comforting at the same time.  I do  believe that children know many of the answers that we adults fail to find.  They have the innocence to see what we cannot. I will try to remember the words of wisdom from that very young child on the days that I feel I can’t make it through. Yesterday was Nichole and Bill’s couples bridal shower.  Jacquie should have been there, she was asked to stand up in their wedding.  She was so honored and excited.  She even saw a picutre of what the bridesmaid dresseses were going to look like. She thought they were beautiful, and was thrilled with the color.  They were green and Jacquie thought that she would look good in green, even if she were still pale and had to wear her wig. The card Nichole gave her when she asked her to be in the wedding is still on Jacquie’s dresser, right where she left it.  WHY?  Why wasn’t Jacquie at the shower, and why won’t she wear the beautiful green dress? On Wednesday, we went down to Roswell for a “Remembrace Ceremony”, where they honored patients who have died.  They had a slide show of pictures of our loved ones. Jacquie’s face filled the screen with joy, happiness and her huge smile.  There would be no one there who could look at that picture and not know how much she loved life, and how much she is loved and missed.  It was made sadder still, by the fact that there were so many young people, lives who still had so much more to learn,give, and love.  Please don’ t think I am saying it was ok to see the older people on the screen too.  It was hard to see anyone up there.  No one should have had to be remembered that way.  It is just that it is so hard to accept the idea that those young lives were not finished here.  Jacquie and the others should still be here with us, continuing to fill our lives with their presence.  WHY did they have to go? Bob and Val, we thank you for planting a lilac bush in honor of Jacquie’s memory. We are grateful to you for keeping her in your hearts and for choosing such a wonderful way to keep her close to you. To All the Mother’s, I can say little to you that I haven’t already said in the past 246 days, or even in the 341 days before that.  There is no greater gift you have been given than to be a mom.  The joys of being a mom can not be replicated in any other way.  There are no words to describe the happiness and joy that overcomes you the first time you hold your newborn child in your arms.  The love is so overwhelming you feel you may burst.  The pride of knowing that you have been chosen to give life to this little person and to guide him or her through a lifetime, is a powerful feeling.  Along with all those feelings, comes a feeling of worry, and some doubt.  Can I do what I need to do to help my child be happy and safe?  Am I capable of seeing that my child becomes all that she or he is capable of becoming?  Will I be able to see my child becomes an adult that others will look up to and say “What an incredible person you are, I would hope I can be more like you”?  Will I be able to do all I can to see that this new life is given the chance to shine among the stars, while here on earth? As for me, I can only say that the greatest gifts I was ever given are my children.  Torey was a gift I chose, TJ and Jacquie were chosen for me.  Somehow, I was given two very precious gifts to nuture and love, and to help me see that my life meant someting important.  TJ and Jacquie are still my life, and always will be. To my mom, there are no words to let you know how much I love you and how much I appreciate all you have alway done for me.  If I have shown strength or courage since Jacquie was diagnosed, it is because you showed me how.  You have stood by and watched my pain, and grieved because you could not change it.  You watched Jacquie suffer, and suffered with her, all the while, wondering why it was her and not you. You stood by Torey and TJ, always there for them whenever they needed you. And you had to endure watching your Jacquie leave us.  You have showed me how to survive, and most days I do a lousy job of it, but please know, that you taught me what I need to do. For my daughter and my mother, I will keep trying. To My Son and Daughter,  Your mother has loved you since the day she knew that you were her special gift.  And every day, I have loved you more.  The pride in the who you have become, grows every day, as well.  You are both my shinning strars, in my eyes and in my heart. Thank you for loving me, and showing me what being a mom really means.  Never, ever forget how much I love you both, and how much pride I have in you.  And always BELIEVE, that I will love you forever and ever and always. With all my love heart and soul, your mom


May 5th 2009 – I have sat down to write, each night for the past 3 nights, without success.  I have been unable to make myself write because I don’t know what to say. I am sure by now, that most people are thinking and saying, “It’s been 8 months and it’s time to move on.” Tomorrow IS 8 months but I can’t “move on”.  I can’t do anything- I am stuck in this world of saddness and disbelief.  Yes, after all this time, I still can’t believe that Jacquie is gone from us.  I still wake up and think that I have to see her, talk with her, hold her, and give her a kiss.  I still hear my phone ring and hope it’s Jacquie calling me to tell me a funny story.  I still see her clothes in the closet and think about how much fun she had picking them out and going shopping. I still think that she will walk through the door at the end of the day and tell me about how her day went. I still think that Jacquie will be here to make her hopes and dreams come true. And then, I remember.  I remember how very much all of you meant to her. Each time I read one of your messages on her guestbook, I remember something she shared with me about you. And as I read what you have written, I can only hope that Jacquie let you know what a special part of her life you were. I remember when we were at Sloan Kettering, and we would talk about the people she missed, and she would always tell me something about those people that made her happy.  I hope you all know how you helped to fill Jacquie’s life with love and laughter. 
“A daughter needs a mom to teach her to love her friends, no matter what they do”.  Jacquie loved you all very much.  Her capacity to give love was never-ending and she lived her life sharing that love with so many people.  That was who she was.  I didn’t have to teach her that, she was born with that rare ability.  Once again, Jacquie taught us something that we should have taught her.  I hope that all of her friends know that her love for you was true and forever. To Shannon and the Colligan family, you are always in our thoughts and prayers. Shannon, Jacquie worried so much about you.  She was afraid that you would not keep fighting, that you might give up.  I am very sure that she is so proud of you now, and is smiling down on you.  She is your special angel.  Be happy and live each moment to the fullest- that is what Jacquie would want you to know. My Very Loving Daughter Jacquie, we are trying.  We start each day knowing, but not wanting to believe, that we will be without you here with us. But it is still so hard.  It is still so difficult to have the constant reminders of your absence.  Every day, the empty chair, the sneakers you wore, your toothbrush, your “Tink” things, your wind chimes, your music, “3 not 4”, and so many more things, remind us that you are not here where you belong.  I know what you want us to do, we are trying, but Jacquie, WHY? Stay with me, with all of us, because we all need you.  Give us strength to keep going, and give us courage to face the future without you.  My Jacquie, I will love you forever and ever and always,  With Love, from your mom