December 2008

December 30th 2008Day 115. Forever.  This “holiday season” has been filled with so many emotions that it is overwhelming.  Sorrow being the greatest.  The sense of loss and “someone missing” is everywhere.  I not only feel Jacquie’s loss, but my heart breaks for everyone else who is experiencing what we are. It seems that few people are left untouched by death at this time of year, that most families have an “empty chair” at their holiday table, one that should be filled by a loved one.  So, my prayers go out to all of you who are greiving and mourning as we are, and know that we wish things could be different for us all.  Another strong emotion that I have been feeling very strongly is gratitude. Although this has been a terrible time for us, we realize it could have been so much more difficult without our family, friends, and “not yet met” friends. The strength to make it through this past month has come from all of you.  Your cards, letters, texts, phone calls, gifts and donations have continued to remind us that we are not alone, ever. The “Ciao Bellas” gave us a beautiful picture frame with a picture of Jax and a poem. It meant so much to us to know that she was there with them at their annual Christmas dinner. Thank you.  Torey wanted to have a tree, so he brought a small one home and put it up.  The only ornaments on it were the “Angels of Hope” knitted angels we recieved from unknown people after Jacquie died.  We have 15 of them, and although we don’t know who sent them, we are grateful that we had all those angels to look down over us and help us through, as Jacquie is doing.  We have recieved many Tink and Believe decorations and ornaments and we have them all throughout the house, in every room, to remind us of the love that Jacquie inspired in so mnay people.  I may just leave everything up all year, except for the tree.  Somehow the ornaments and decorations bring some peace, maybe becausethey represent how much Jacquie meant to so many people.  We are grateful to all the families who chose to not exchange gifts but to make donations in Jacquie’s name to her foundation.  We are getting ready to make a large grant to Dr. Wang, Jacquie’s doctor at Roswell.  She will be targeting the money towards research on Jacquie’s specific type of ALL.  Someday, when ALL is only a memory, you will all be able to say “I helped to find a cure in honor of Jacquie”. We want to wish Marrietta Bennett and Sarah Lintz good luck and safe running as they run the Disney World Marathon this week, in Jacquie’s name. Thank you for honoring Jax, she would be so very proud of you! PLEASE PLEASE PLEASE, those of you who came to the Vera party, or purchased something that weekend, PLEASE try to find a few minutes to e-mail us a Vera Story. It doesn’t have to be long, just a short story either about something you remember about Jax and her Veras, or why you came to the party, or what it meant to you to be there supporting Jacquie’s foundation, or anything else you think might help us have the people at Vera Bradley consider doing something in Jacquie’s name. The more support we have for our cause, the more they will have to take notice of us.  We really would love to make this happen, but we need to have those endorsements from as many people as we can. “A daughter needs a mom to assure her that she always has a place to come home to”. My dearest daughter Jacqueline Elisabeth, I know that many people say your are “home” now, that you are in heaven and that is home. I know that this is your home, here with us. And I know that although you can never be here with us, you willl always be home wherever we are.  And maybe someday you will come home again to “talk” to me and let me know that you miss us and that you love us. Where  is your home?  It is in our hearts, forever and ever. And I guess you never have to come home to our hearts, because you have never left our hearts.  I will love you forever and ever, love mom


December 26th 2008 – I know it has been a while since I last wrote, but I just couldn’t seem to get my emotions in order long enough to get the words typed out.  I knew the holidays would be difficult, but I didn’t expect the continuous pain in my heart.  Everywhere I look, everything I see and hear reminds me of what is missing in our lives now- now and forever. Jacquie is truly everywhere with all of us, and that is a wonderful thing, it is a gift. But the other side of that is that the pain of her physical absence is so constant. I keep hearing her voice from last Christmas.  Jacquie spent from Dec. 13 to Dec. 27 in the hospital.  So we didn’t celebrate until the 27th when she got home.  As we opened gifts, she talked about “next year” and how we would decorate our new house, and what we would do to make the holidays special.  She even talked about what we would have for our Christmas dinner!  We never stopped believing that she would be here for this Christmas.  She should be here with us.  She should be partying with her friends, spending time with her family, teasing and joking around with TJ and loving life.  We need her here with us, I NEED her her with me.  We are so thankful to all of you who text, send messages, call and write.  It is good to hear from her friends and family because we know that you are keeping her memory alive and that is so very comforting. It is nice to hear when people say that they know Jax is with them and helping them through tough times.  Jacquie will keep helping us all, but I wish I could have her here with me to hold me and hug me tight.  When Jacquie would ask for a hug and I would hug her, I think that it helped me as much as her, and I miss that so much. I miss her arms around me and telling me that she loves me.  And even though I tell her all the time that I love her, I can’t see the smile on her face when she hears it and I can’t hear her tell me “I love you more, mom!” When Jacquie was born, she had my arms and Torey’s to hold her and welcome here into the world.  I wonder who held her and welcomed her into heaven.  “A daughter needs a mom to instill patience in her.” Jacquie was not always patient but she did her best, and now I am trying to do the same thing.  I am trying to be patient, waiting until I can be with Jacquie again someday.  And I hope Jacquie will be there to welcome me.  My Darling Daughter Jacquie, there are still no words to tell you how much you are missed and needed. Maybe you could try to feel inside my heart and then you will know how much.  If you can, send me some strength and courage, I am running on empty and I need you to help me.  I love you my Jacquie, forever and always, Love your mom forever.


December 20th 2008 – Fifteen weeks, 105 days. When will the numbers stop?  “A daughter needs a mom who tells her of the special place she holds in her heart.”  How can any mother not let her daughter or her son know what special places they hold in her heart?  From they day your child is born, they fill a part of you that you never knew was missing. They not only came from you, but they came to you to fulfill your life. Children are a mothers way of knowing that she is worthy of the greatest gift of all.  I never doubted that I would want children, that I would want to be a mom. I didn’t care if I had boys or girls, I just wanted to be a mom. When TJ was born, Torey and I were beyond thrilled, what a blessing to be a parent. Yes, those of you who knew him as a child knew he was “a little” on the hyper side, but he was ours, and nobody could have loved him more.  Then Jax came along, and once again, that part of me that was missing something I didn’t know about, was filled. We thought our life couldn’t be any more blessed.  The problems that raising children brings, could never come close to comparing to the joys and happiness it brings. Each phase of their lives are a chellenge, and the difference between sons and daughters became more apparent as they grew older. Although both developed independence, part of Jacquie still needed me to be her mom more often.  Jacquie would confide in me and share more of her thoughts with me than TJ did, which I guess is “normal”.  It just seemed as though our relationship would always be that way, that I would be here for her until forever. TJ would share parts of himself with me, but probalby only because I asked him so many question. Jax would offer the information without being asked, and our conversations usually started out by her saying “Guess what” or “Do you want to know something?”. Of course, I always wanted to.  What a great way to keep your duaghter in that special place in your heart, by sharing her life with her. I think that is what is hurting me so bad right now. Certainly, the 11 and a half months we spent practically glued to each other during her treatment gave us a special bond, but it was there before she was diagnosed.  Maybe not as desparately strong, but it was there and we both wanted it and needed it. And now, it is gone. My Jacquie still has her very special place in my heart, but she doesn’t share her life with me anymore.  I keep talking to her and sharing my life with her, but she can’t answer me back.  Both she and TJ will always be my children, I still have two children and I am still Jacquie’s mom.  I don’t know how to be anyone else.
My darling daughter Jacquie, today I will try not to cry as much, I will remember how strong you were and will try to follow your example.  The days are long and lonely, and even though I know you are ok, I still wish I was with you, to hold you and love you. Please keep trying to help me, I am having such a hard time being without you, and I can’t wait to see you again. I will love you forever and always. Love mom


December 16th 2008 – Yesterday was day 100, the “magical” number that wasn’t.  The 100 days that have gone by without Jacquie seems like a million. Every moment seems to be filled with memories, sights and sounds that keep pounding in my head that there will be no more new memories and I keep trying to cherish the ones we have. On Sunday, our families went with us to a Holiday Rememberence Service, which was held by the funeral home at St. Leo’s Church. They hold it each year so the families have a chance to honor their loved ones who are not with us anymore, and try to “find some peace” over the holiday season. It was a nice service, and we all had a candle to light, and they read off the names of all the loved oned who had families there. At the end of the service, we were told we could blow out our candles, and it was so hard for us to do. The light from the candle seemed to be Jacquie glowing and none of us wanted to put that light out.  Jacquie’s smile could light up a room and her whole personality was so filled with life and energy. If we blew out our candles, would that put out Jacquie’s glow forever? And I realized it would’nt, because her glow continues on and on, forever in all of us.  In my mind and in my heart, when I see and feel Jacquie, her smile warms me and soothes me.  I hope that is the same for all of you.  Although the service was nice, and helped a little, I don’t think that any of us are at a point where we feel at peace. I know that my heart hurts more than ever, and my tears come more often now. My wish for this holiday season is for it to be over.  Jacquie loved the holidays and without her here the pain is too great.  I keep hearing her voice telling me all her plans for how she wanted us to decorate the new house this year, and what we would have for our Christmas dinner.  Now, it is too hard to even look at the boxes of decorations let alone put them up.  And what am I supposed to do with the gifts I bought for Jacquie already?  Since we came home from New York, I had been buying things to give her for this Christmas, NEVER  believing that she wouldn’t be here with us. NEVER believing that she wouldn’t open those gifts. What do I do now without her? I do know one thing we can all do for her. We can make sure that Vera Bradley considers doing something in their line for Jacquie.  PLEASE PLEASE, everyone who came to the party, or ordered something over the phone, if you could take a little time to write up a small note for us to give to the rep when she meets with the company presidents in January.  If you could just write something about why you came to the party, or what it meant to be there, or if it was your first Vera purchase, how you felt, anything to let them know that Jacquie was an influence. Just a paragraph would be great, you could e-mail it right to Jacquie’s foundation e-mail.  Over 140 (YEAH!!!!!!!!) people came to the party, and if everyone wrote something, Vera would have to take notice.  We need them to us by January 7th so we are able to give them to Maureen before she leaves for her meeting with them.  PLEASE everyone, take the time to do this- think of how great it would be to go to the store and buy a Jacquie Vera, and know you helped make it happen. Thank you everyone who helped make Jacquie’s first annual party such an incredible success.  I know Jacquie is honored that you all came to her party. “A daughter needs a mom to teach her not to let a good day slip from her fingers.”  I think Jacquie knew that, lived it and is now teaching all of us that.  I miss Jacquie so very badly that some days, I just want to stay in bed.  Then I think, would Jax be proud of me if I wasted this day?  Would Jax be proud of me if I gave into my grief and sorrow and let this day go by without even trying to get through it?  Of course, we know the answer to that.  Jax would kick my butt out of bed, just like I had to do with her sometimes. So today and everyday, no matter how difficult it is, no matter what problems come up during our day, we all have to remember to keep moving forward, and pray that the next day is at least a little easier.  My darling daughter Jacquie, I know I say the same things all the time, but I have no other words to use to tell you how much I miss you, and how desparately I need you here with me.  I hold your necklace in my hand and pretend I am holding you.  I keep singing to you and pretend you can hear me and are telling me how terrible I sing and to “please stop”.  I talk to you and pretend you are answering me back. I go to sleep at night and pretend you are in the bed next to me, just like when you were in the hospital. And sometimes as I lay awake, unable to sleep, I pretend I can hear you breathing, and sighing in your sleep.  I love you Jacquie, forever and always, and the ache in my heart will never go away. Love, mom


December 13th 2008 A year ago today, Jacquie was back in the hospital again, this time for a fever of 105.7.  This admission was made worse by the fact that we were at Millard Suburban Hospital instead of Roswell.  Roswell had no beds available and told us we had to get her to the nearest emergency room as soon as possible.  It took us less than a half hour to realize that we are so lucky to have a place like Roswell here in Buffalo, that specializes in cancers and knows how to treat cancer patients.  We spent 7 hours in the emergency room waiting and begging for help for Jacquie, to no avail.  At 5 pm, one of Torey’s former gymnasts, who is now a doctor on staff, came in  and took over.  To this day, we are so grateful for both Dr. Thomas Cumbo’s (jr. and sr.) help, guidence and support during the week Jacquie spent there. I don’t know what we would have done without them, the hospital staff seemed un-prepared to handle an ALL patient. Jacquie was home less than four hours and her fever returned.  She ended up back at Roswell this time (thank God) and spent another week  on antibiotics and other treatments.  Jacquie spent her first Christmas not at home.  We celebrated our Christmas on December 27th, the day she was discharged.  We planned how we would spend this Christmas.  This was not what we planned, this was not how we believed we would spend Christmas 2008.
My Dear Daughter Jacquie- Oh what a party in your honor last night!  I know you were there with us and you saw the dozens and dozens of family and friends who came out, in spite of the cold and snowy weather, to celebrate you and your love for Vera Bradley. Debbie and Mary Ellen and their staff at The Perfect Gift were absolutely incredible!  There was wine, and munchies and  lots of Vera.  And Jacquie, the Vera representative came!!!!!  Her Name is Maureen and she was so very nice.  I wish you caould have met her, you two would have been immediate friends.  We are going to move forward with our request to ask the Vera Bradley company to do a pattern or style in your honor. Oh Jax- wouldn’t that be GREAT- to have people asking for “The Jacquie purse” or “The Jacquie pattern”!  We are going to ask everyone who came to please e-mail us either a Jacquie story from the past, or write up a short story about the party itself, for example, why they came, how they felt being there, or what it meant to them. We really need to get about 100 stories together for Maureen to present to the company presidents when she meets with them in mid-January.  So we will ask for all the stories to be sent or e-mailed to us by Jan. 7th.  We’re going to make a great pitch for you Jacquie, and if nothing can be done with it, oh well. But for now, we BELIEVE that we can make this happen for you.  And to everyone who came and supported Jacquie and the Foundation, we thank you so very much, you continue to amaze us and humble us with your never-ending support and love.  Jax- were you watching your dad and I try to get Shelby to sit and wait for us to sing Happy Birthday to her, with her birthday hat on, with her cupcake in front of her?  If so, then you saw her gobble down the cupcake and almost the candle, before we had a chance to sing to her.  I’m sure you laughed at that!  Your cousin Danielle has been helping TJ with the web site and did the last newsletter- she’s doing a great job and I told her that we all appreciate her helping make TJ’s workload a little lighter.  This update, instead of taking one of the quotes from the book you gave me about why a daughter needs a mom, I’m going to make one of my own.  Jacquie, a mother needs a daughter to teach her how to live her life being the best person she can be. To be a mother is the greatest gift in the world and you and TJ taught me that.  I miss you and I love you, my Jacquie, forever and always, Love- mom


December 10th 2008 –  Sharon has asked me to write an update. It is my first since I wrote on September 6 telling readers of the end of Jacquie’s cancer. We are navigating through our new life. New, because of it being so very different than the last 23 years we have experienced with Jacquie in it each day, and navigating the best we can. Navagating in a mannor that I’m sure Jacquie would be proud.  However, certainly not as proud as she made us feel each day of her fight. On several occasions at her bed side she couldn’t understand why everyone saw her as being so strong and oh so very brave.  I told her that we all have the ability to some extent to put ourselves in someones else’s place. I told her that when we put ourselves in her shoes, most of us didn’t see ourselves as being able to measure up to the way in which she was handeling her fight. I know I would have gladly switched places with her. It was then that I could tell her that I did’t think I could have been as brave and gracious to others, being the one with cancer, as she did. So several times I let her know how incrediable she truely was and reminded her of this thought. I find myself starting every day the same, waking up to Jacquie’s pictures on my nightstand, telling her “Good Morning, I Love you Jax, and I will do my best to make the most of today”. Sometimes I am reminded of the movie Groundhog Day, starting the day the same and all but, we all know how Jacquie loved to quote movies so I’m sure she is smiling down on my comparison. Three months passed by yesterday and it seems like forever since I was able to give her a kiss and tell her its going to be alright. I hope more than anything she is pain free and alright. We re-opened our Pro Shop at the gym yesterday as Tink’s Pro Shop in her honor and memory. It really looks good – Sharon and Sheryl did a great job getting it ready. We continue to move forward with Jacquie’s foundation projects. TJ and I met with Roswell Park this week to plan the start of a very special research project. One of Jacquie’s Leukemia doctors will begin a study using the funds raised by “Dancers Give Back”. We will set up a link on Jacquie’s website with details and progress to allow all the wonderful dancers to know the difference they will be making. We continue to come up with more ideas for foundation activities, knowing there is an endless need for help with those continuing in their fight against cancer. The Vera party is coming up this friday. I’ve never been so excited about a purse party before, oh thats right I’ve never been to a purse party before. I’m sure Jax would be laughing at me now. I could probally stay up all night talking and thinking about Jacquie, its easy to do. As the holidays approach, let your family and friends know how you feel and do something special for someone, you know Jacquie always did.  We all can make a difference, everyday. Our never ending love and thanks to all of you !


December 7th 2008 – 95 days. In 5 days it will be the 100th day. That was supposed to be the “magic number”. 100 days out of transplant. 100 days and we would be coming back to Buffalo leukemia free. 100 days was supposed to mark a new beginning. It didn’t happen that way and I keep asking myself why. I guess we will never know, but it doesn’t stop me from asking, or questioning or being so very angry. Today, I feel ready to give up. I am so lonely without Jacquie, and yes, before you say it, I know that I have TJ and Torey and family and friends. I know that!!!! But I am so lonely without Jacquie. I still feel as though I need to be with her, helping her, taking care of her. I feel as though my time with her is not done yet, it is not supposed to be over yet. And I’m not ready to be without her.  “A daughter needs a mom who never grows tired of holding hands.” I still need to be holding Jacquie’s hands. I still need to be touching her, and kissing her and telling her that I am with her always. I need to let her know that I will never tired of holding her hand, that I will hold her hand forever. I want to be able to put my cheek next to hers while I hold her hand and sing “the Rainbow Song” until she tells me to stop. I want to put may hand on her head and rub the peach fuzz where her hair used to be, and tell her that she will have hair again someday. I want more time for her to make her dreams come true. Jacquie, I am struggling so hard now, the holidays are so very hard without you.  We will not be mailing out cards this year, and we will not be “celebrating”.  We will be remembering and missing you and wishing you were here with us. Family and friends, please try to understand that we love you and are so grateful for all you have done for us, but this will not be a joyous holiday season for us. Jacquie, I wish I could be with you, and hold you, I love you forever and always, please help me make it through Friday night. I will be there for you. Love mom


December 4th 2008-  I was looking through some scrapebooks of Jacquie’s yesterday and I found a poem she had taped to one of the pages. It was not dated, but it was in with her high school things, so it must have been between 1999 and 2003 that she had put it there. It made me sad to read it because it talked about the future, and little did Jacquie know at the time, that her futrue was to be cut short. This is the poem, called “Moving Forward”
                     I know not of the future
                     Nor where it’s path may lead
                     For I can not see beyond the bend
                     As the trail curves away from me
                     I do know of the past
                     And what I left behind
                     For the stain of memory
                     Remains fresh upon my mind
                     I shall chose the future
                     For I know full well the past
                     With but a moment’s hesitation
                     I move forward at long last
I am sure that this poem meant something special to Jacquie, and that the words held some comfort and advice for her. I hope so. I wish I could say the same thing, but right now there are no words that comfort and the words in the poem hold little meaning to me. Maybe someday, I will be able to read it and feel what Jacquie felt when she did. For now, the future does not mean as much as the past.
Some of Jacquie’s friends came to visit this past Sunday. It was so hard to have them here without her here too. Once again, I found myself asking why she wasn’t here to join her friends. Why Torey, TJ and I were here without her. Why having them here hurt so much, when it really was good to see them. We were so happy that they took the time from their busy schedules to come and see us, to see how we are doing and to try to help. How very fortunate we are to have had such wonderful friends in Jacquie’s life, and to know they are still here for us. I was so tempted to tell them I am not ready to see anyone yet, but I could hear Jax telling me that we needed to see them and maybe they needed to see us. When they left, I realized Jacquie was right. I still cried.  And then I cried some more.
On Monday night, Torey and I went to a Newly formed support group for parents who have lost a child to cancer. It was very difficult to be part of that group- we  didn’t ask for a membership in it and we didn’t want to be eligible to be in it. We, just like the other parents who were there, never thought that we would be sitting in a room with other parents who had a child die of cancer. But I did learn one important thing there. One parent pointed out that we shouldn’t ever say our child lost his/her battle with cancer. Our children were fighters- they never gave up, their bodies gave out. Our Jacquie fought until her body would let her fight no more. Our children were brave and courageous and the battles their young bodies had to endure should never have had to be fought.  We must find a way to end this disease. “A daughter needs a mom to teach her that her body is a temple”.  Jacquie’ body was a temple that housed a wonderful joyous outlook on life, enthusiasm, love, happiness, and a generous and giving spirit. She knew who she was and what she was, and the leukemia NEVER took that away from her.  The body that housed that temple may be gone, but the qualities within that temple will live on in all of us forever.  My darling daughter Jacquie, I know I say this wll the time, but I miss you so very badly, and the days seem to be getting worse, not better. I love you with all my heart and soul, and I would give my life to have you back again. I will love you forever and always. Love, mom
PS Jacquie- Juicy Couture “Believes” too


December 1st 2008 – The good news is that Thanksgiving is over. We did our best to make it through the day, but once again, the table that seats four only had three people sitting at it. Jacquie loved the whole idea of a day dedicated to eating. She would start looking forward to it weeks in advance. The day was special because it meant so much to her and TJ, to be able to share their love for food together – what a pair they were! This year, the three of us ate at our house, and remembered the wonderful Thanksgivings of the past. It is so hard, but Torey and TJ are trying to make it easier. I am so proud of both of them, their patience and understanding is endless. On the days that are really bad, one of them is always there to pick me up. I feel as though most days I move through life like a zombie, but each day they get up and go to work and just keep going and doing what needs to be done. TJ is starting to get busy with his new business venture, and I know that he will be a success at it, he is so good at what he does. Jax would be so proud of him. He asked her to be his office secretary once and she said “ok”. Then a few days later they were joking around and she said she wanted her own office, TJ told her that wouldn’t be possible, so, she called and left him a voice mail saying she quit. We laughed so hard because she hadn’t even started working yet! She wanted him to keep doing waht he loved – cars, and he will. Jax thought her big brother TJ hung the moon, and I know that she was so proud of the man he is. “A daughter needs a mom to encourage her to be grateful”. Jax was always grateful for the people in her life – her family, her friends and just about everyone she met. Jax felt that everyone who was, even in only a small way, a part of her life, helped to make her become the person she was. I think that TJ was her biggest influence and role model, and I couldn’t even begin to count the times she said how blessed she was to have TJ for her brother. But, all the other family and friends who were part of her life, she was so very grateful for also. Each person gave Jacquie a little part of themself to her, and maybe that is why Jacquie was such a remakable person – she had so many remarkable people in her life. So once again, thank you to all of you who shared Jacquie’s life, for giving her so much to be grateful for. To my daughter Jacquie, I miss you with all my heart. I still can’t imagine having to live without you. I still am waiting to wake up from this nightmare that never seems to end. I love you forever and always, my Jacquie. Love, mom