February 2009

February 28th 2009 – 27 weeks today, and still I wonder “why”.  I still wonder why this had to happen and why it had to happen to Jacquie.  I wonder why I keep waiting for the phone to ring, with Jacquie calling me to talk.  I wonder why I need to spend so much time in her room, with her things, waiting for her to come back to them.  And I wonder if we will all get through this.  “A daughter needs a mom to teach her that when nothing seems right, do something normal.”  I wonder why we don’t have a “normal” anymore and if we ever will.  I know it will never be the “normal” our lives used to be.  But when Jacquie got sick, people told us we would adjust to our “new normal”, and we thought sure, whatever that is we can do it because it is what we must do to help Jacquie get better.  And all along the way, as Jacquie’s condition changed, and things came up that we had to deal with, we kept adjusting to another “new normal”.  That was ok though, it meant we were moving towards something better for Jacquie.  I don’t want to have to find a “new normal” now, not without Jacquie here.  Our “new normal” was supposed to be something the four of us built together, it was not meant for only three of us.  Not surprising, Jacquie held us together many times, she was the one who told us what to do and how to do it.  She was our fearless leader, taking us where we didn’t want to have to be, doing what we didn’t want to have to do.  But we adjusted.  Now, it is so hard to find that place without her.  It seems so wrong to have to go on without her here. The 175 days she has been gone seem like forever.  I am so tired of being here without her sharing our lives. My Dearest Daughter Jacqueline Elisabeth, I miss you so much.  I am lost without you.  I go through my days as I am “expected” to, and I try very hard not to be a “Debbie Downer” when I am around people.  I do what I have to do, and then wait to be able to go to bed at night.  Ashley wrote down the words to a song she heard, it’s on your message board.  I will read it to you after I finish writing.  The words are so sweet and full of meaning. Thank you, Ashely, they gave me some comfort as I read them.  All the messages help me  get through the days, and I hope you like it when I read to you and you hear how much everyone misses you and loves you.  To have touched so many lives in such a short time is a gift that is rare.  You gave so many people a chance to make their lives better, but I still ask why you had to leave us to accomplish that- why couldn’t you have been able to do that here, with us. The sun is out and I pray you sent it for us to know you are here, near us and helping us through each moment.  I love you, my Jacquie, and I need you.  I am so thanful you are my daughter and for all you have taught me, shared with me and how much you loved me.  With love foever and ever and always, your mom


February 23rd 2009 – 170 days today.  Friday night was another wonderful tribute to Jacquie and the life she lived.  The fundraiser at Buffalo State College was a huge success.  Our sincerest and deepest thanks and appreciation go out to the men’s hockey coach, NICK CARRIERE, the hockey team and the Buff. State athletic department for allowing us to invade their ice rink with all our baskets, baked goods, chuck-a-pucks, 50/50 raffle tickets and Jacquie Hirsch For A.L.L. Foundation merchandise.  When Nick first called and asked if we would like to do the fundraiser at the hockey game between Buff. State and Geneseo, I was concerned about how we would pull it all together in a week.  I should have known that people would jump into the idea with so much help and support, that failure would NOT be an option.  I know I say this all the time, but it is so very hard for me to try to find a way to thank people for all they do for Jacquie and her foundation.  We had hoped for 25 baskets, we had 38, we had hoped for a couple dozen items of baked goods, we had over 60.  The 50/50 raffle made $252.50 and we sold 74 out of 80 chuck-a-pucks, plus a lot of foundation merchandise.  I had set a goal of $500.00, I thought that would be a great amount to raise, with the short planning time we had.  WE MADE $1,602.25.  Can you BELIEVE it?  Of course you can, because this is JACQUIE’S foundation and JACQUIE’S family, friends and supporters who we are talking about. This is JACQUIE’S dream that all of you are going to help us make come true.  Even more important than the money raised was the awareness raised.  So many people took information about Jacquie’s foundationa and the Ride For Roswell. The more people that know about us and our goals, the more people they will tell and so on and so on.  Word will continue to get out, and there will be no stopping us when  it comes to informing the public about the need for blood donors, bone marrow donors and money for research to find a cure for A.L.L.  And TO ALL WHO DONATED ITEMS AND THEIR TIME,we are forever grateful to you for your support, hard work and love. Thank you again to Nick and the guys for the after-fundraiser party, it was so nice of you, and gave us a chance to personally thank everyone who made the night so successful. (Thank you notes will be on the way. Please let me know if you don’t hear from me, some donated items were not labeled with a donor’s name) My dearest Daughter Jacquie- Although Friday night was a “good” night, Saturday and Sunday were very, very hard. Saturday should have been your “New Birthday” first birthday.  It was one year ago Sat. (the 21st) that you recieved your first transplant, the one that was going to give you your life back.  I cried most of the day for the party we couldn’t have for you, the one we planned last Feb. 21st- complete with menu and guest list.  I cried because I miss you more and more each day.  I cried because  I am still wondering when the phone will ring and it will be you, or when you will ask what’s for dinner.  I cry because I don’t know how to keep moving forward becasue all I want to do is go back. “A daughter needs a mother to teach her to make thankfulness a habit”.  I know you were thankful for so many things, you would share with me things and people that you were thankful for having in your life.  I’d like to think that the people you were thankful for knew how much they meant to you.  We are finding out through this awful journey we are on, how many were thankful to have you in their lives, and how many lives you made a difference in.  I am thankful to know that your life here left such an impact on so many, because your death would be so much harder to bear if I thought that nobody cared.  Just knowing how many love you makes me thankful and grateful for the woman my little girl became.  Please keep by my side, help me, guide me and love me.  I miss you so much, my Jacquie, I don’t know what to do sometimes.  I think my heart will just stop beating.  I love you, my Jacquie, and I will forever and ever and always. Love, your mom


February 19th 2009 – I don’t know what to say.  I am so filled with sorrow and grief, for us, our family, our friends, as well as those who have lost loved ones in the plane crash.  Last evening we went to a memorial service for one of the victims.  The outpouring of love and support was incredible.  The church was packed, standing room only.  I kept thinking, once again, how could someone so important to so many people be taken before his time.  His wife and three beautiful daughters, their families and friends will forever be left with the same unanswered questions that we are.  They will measure time in hours, minutes, days, weeks, months and years, since he died.  The will have sad “anniversaries” and too many “firsts without”.  All these families will struggle to make sense of something so very senseless. The feeling of helplessness that so many have expressed to us, about not being able to help the pain and grief, is consuming me now.  We have watched people we care a great deal about say goodbye to a mother and grandmother, a husband and father,and strangers that we don’t know, say their goodbye to family members and dear friends. And we stand by and watch without being able to do anything to help.  All I can hope for is that they all find the strength and courage they will need to go on, from those who will surround them and support them, just as so many  have done for us.  I have tried to convey to all of you how much you have done for all of us , to help us through this very difficult journey.  I pray that those who are grieving have the same wonderful family and friends like we do, so that they realize they will never travel their journey alone.  As we walked into the church last night, I could feel a scream  in my head.  I wanted to scream outloud for the injustice of it all.  I wanted to scream that I want life back to the way it was.  I wanted to scream for someone to help me understand “why”. But, I couldn’t scream.  So I just stood there and cried instead. My Jacquie,  I know I have not been doing as well as I should be.  This past week has been make worse by the tragedy.  But I’m missing you so much, everything is a reminder.  As we approach what would have been your “New First Birthday”, I  think of where we were and what we were doing a year ago.  I miss you “my BFF”.  As hard as the time in NYC was, I loved and cherished every second with you.  I  loved watching those cooking shows with you, as we wondered what our recipe would end up tasting like if we made what they were making.  We always decided we would rather have someone else make it for us!  Oh, Jacquie, so many wonderful times spent together.  So many difficult and painful times, as well.  But never, ever for a second, do I regret a moment spent with you.  I love you, my daughter.  Please stay with me, and help me through this.  I need to know that I am making you proud, so I will try to keep moving forward.  I will love you forever and ever and always, Love, your mom.  PS  I hope you like my new license plate- I got it just for you!!


February 15th 2009 – Yesterday was 23 weeks, 161 days. For us, it has been forever.  For the families and friends of the victims of the plane crash, their forever is just beginning.  Although we all shared our “first Valentines Day” without our loved one, many of them have not yet even had the chance to know what is ahead for them. The pain brought on by the unexpected and tragic way these died people is hard for us to imagine. I heard the explosion for our house, we are less than a mile from the crash site, and I could see the flames as the night sky was lit up with burning jet fuel.  And I prayed so hard that whatever had happened would not be as awful as I was imagining it would be.  But as the night went on and I watched the constant news reports, I knew that my prayer, once again, would not be answered.  Our thoughts and deepest sympathies go out to all those who will be affected by this sensless nightmare.  We know firsthand, that there will be no words, no expressions, and no actions that will make the pain go away for those left behind.  For those of us who knew someone who lost their life on February 12, we need to remember that the only thing we can do is to let the families know we care, and we are here for them.  We cannot make the pain go away, and we cannot make them heal any faster.  They need our love and support and they need to know they are not alone in their grief.  A quote from Jacquie’s book she gave to me says “A daughter needs a mom to help her see that death is a part of life”.  I never wanted to use this quote in my updates to you because I hated what that quote meant. Jacquie knew that death was a part of life, but we never thought she would become that quote.  And now, all these families will be living the way we have had to.  It is a horrible life lesson that will affect all of us for a very long time to come.  Please say a prayer for the fifty souls who joined Jacquie in heaven, and for Ali’s grandmother, and Mike’s father-in-law.  Life is so very unfair. My Darling Daughter Jacquie, last night we went to see your favorite country band. Rascal Flats played in concert in Rochester, and your dad got tickets for us for Christmas.  We wanted to go to thank them for making you so happy with their music, and giving you a song to use to help you fight through your difficult journey.  When they played “Stand”, your theme song, we cried.  We cried for what it meant to you and what it stands for now. We cried that we were there without you. We cried because we remembered the last concert the four of us went to together, one month before you were diagnosed.  And we cried for what will never be again.  I wrote you a card for Valentines Day, and I will read it to you one of these mornings after I sing to you.  I love you, my Angel, take care of the new Angels, and I will let their families know that as long as you are in heaven with thier loved ones, they are in the very best of hands. Once again, you will be the teacher and you will find a way to let those left behind know that they will never be truly alone.  I will love you forever and ever and always, my Jacquie. Love mom


February 11th 2009I am writing this to ask for anyone who might be available to help us with a fundraiser.  I spoke to the coach of the Buffalo State Men’s Hockey Team, Nick Carriere, and he has offered to host a fundraiser for Jacquie’s foundation on Friday, Feb. 20th.  I know it is short notice but I’m sure we can pull it together in time.  It is for the hockey game between Buff. State and Geneseo (Yeah!)  It is Buff. State’s Alumni weekend so there should be a pretty good crowd.  The game starts at 7:00 pm.  We are planning to do a 50/50 raffle, a bake sale, a Chinese auction, a “chuck the puck”, and Jacquie’s merchandise sale.  We are very much in need of baked goods, baskets, or gift certificates/cards, and people to help us before, during and after the game.  Please e-mail me, Sharon@Jacquieforall.com and let me know if you would be able to help in any of these areas, and if you would be willing to be in charge of one of these events.  Again, I realize we don’t have much time, but any money we raise will go directly to help patients and their families who are affected by A.L.L., and towards research to fined a cure.  Many of these patients don’t have much time either and I BELIEVE that those of you who have been through this journey with us know that WE WILL make this happen.  Thank you so very much. My Darling Daughter Jacquie, I will make you proud of me, I will make sure that this is a huge success.  And when you look down on me, you will say “That’s MY mom!”  I will love you forever and ever and always, my Jacquie.  You are my courage and my strength. With love, your mom


February 9th 20095 months this past Friday, 22 weeks this past Saturday, 156 days today.  How can it be?  One year ago this date, Jacquie and I left for New York City on the next phase of her journey to recovery.  It is so hard to write today. It is just so hard to be awake today.  I found this in Jacquie’s book she gave to me, and for the first time, I feel that I was wrong to teach her something that wasn’t true.  “A daughter needs a mom to teach her that you cannot start a life over, but you can change the way it ends.”  But I couldn’t, could I?  I couldn’t make the end be different.  I couldn’t change that Jacquie would be taken from us after fighting so hard.  I couldn’t change that even though so many believed, it would not be enough.  I couldn’t find a way to keep her here. I couldn’t help her. I lied to her when I taught her that if you want something bad enough, if you work hard enough, it will be enough to make it happen.  It wasn’t. I feel as though I wasn’t honest with her, but I BELIEVED it with all my heart.  I really thought that we could make it turn out the way we wanted.  How could I have been so wrong?  How could I have let myself think that believing and praying and hoping and wishing and working hard would matter. And how could I have taught that to Jacquie, when it was wrong. My Jacquie, I am so sorry that I didn’t know.  I thought we could change the way it ends.  I am your mom, I should have known so I could be honest with you.  I am so very sorry, Jacquie.  I long to see you and hear you and touch you again.  I will wait until it is my time to be with you, but that won’t stop me from missing you and needing you so much now. I love you forever and ever and always, I am so sorry  Jacquie.  With love, your mom 


February 5th 2009 – Day- forever.  Today  I thought about all the moms.  The moms who love their children with all their hearts and souls, and with every breath they take.  I think about how moms would do anything for their children to let them know how loved and treasured they are.  To let them know how very proud they are of their accomplishments. To let them know that mistakes happen to all of us and we need to learn from them. The moms who teach their children right from wrong, and how to take responsibility for their actions.  The moms who show their children that to be respected you have to be respectful.  The moms who show their children that the only limits to what they will achieve are the limits they put on themselves.  I thought about all the ways that moms prepare their children for the future, and what an incredible undertaking that is.  We become moms with no book that can actually tell us how to do the most important job there is in this world.  There is no “practice parenting” or video game that can help us through the years of raising a child.  There is only experiencing it and doing the very best you can.  If I could go back and start over, I don’t really know if I would change much in how Torey and I raised Jacquie and TJ.  We made mistakes, of course, but we tried not to make them more than once.  We tried to let them be young and have a wonderful childhood, while preparing them to be adults someday.  “A daughter (and a son) need a mom (and a dad) to encourage them to be whatever they want to be”. That is what I thought about today.  And I cried, knowing that Jacquie knew exactly what and who she wanted to be, and she was everything that is good and right in this world.  I cried because she will never have the chance to teach her children all the things that we taught her.  And I cried because I know deep down in my heart what a wonderful mother Jacquie would be. My Darling Daughter Jacquie, I leave you with this thought tonight. As much as you told me that I taught you about life, you taught me so much more.  Someday when I am with you again, I will show you how much your life lessons have meant to me.  I know that without your lessons to me,  I would not be able to go on without you. I will love you My Jacquie, forever and ever and always.  I know you will not leave me, you will always stay with me and help me until we are together again.  Please don’t leave me.  I love you and I still need you. Love, mom


February 1st 2009147, that is the number in my head when I woke up this morning.  And not for the first time, I knew that no matter what the number is, it will always hurt.  And as we move into this new month, I am constantly thinking about where we were 1 year ago. We were getting ready to take Jacquie to New York City, to Memorial Sloan Kettering Cancer Center, for what we BELIEVED would be her life-saving bone marrow transplant.  Jacquie and I were very nervous about going, not just the transplant, although that was first and foremost in our minds, but leaving home and being so far away.  As many of you know, our decision to go to MSKCC, instead of Roswell, the Cleveland Clinic, or anywhere else, was one of the hardest decisions we had had to make up to that point.  So many things to consider and to research.  We wanted Jacquie to be in the best place possible, and we agonized over it until we couldn’t wait any longer.  In the end, with all we knew, and with guidence from so very many wonderful people, we decided on NYC.  Jacquie was very worried about being so far away from her family and friends- her support systems would no longer be just a phone call away.  We knew that for the time we were there, it would be mainly just Jacquie and me.  I think she probably wondered if I would drive her crazy, spending 24/7 with her!  We had so much to plan- clothes to take for the hospital and after discharge, things to keep busy with, which stuffed animals to take, how many Tinkerbell pillows and blankets, and of course, which Vera Bradley purses to bring.  Jacquie was sad about having to leave the new house too.  She loved her “new” home, and before we left, she spent a lot of time, putting her special touch in every room, and making plans for what she would add when we came home from New York City. She had so many plans and so many ways to make this OUR home- the four of us. We never stopped believing that she would be coming home. We just didn’t know how the homecoming wouldn’t be what we had hoped for.  “A daughter needs a mom to prepare her for what she will face when she leaves home.”  This trip to New York City was not what this quote was supposed to mean.  This was meant for when moms  have to let their daughters move on to the next phase of their lives, whether it is to go away to college, move away for a new job, move out of the house and in with friends, or leaving home to be married.  There is no way this quote was saying a mom needs to find a way to help her daughter leave home to go to a cancer hospital to fight for her life.  I didn’t know how to help prepare her.  I didn’t know how to prepare me.  I wonder what I should have said or done to make it easier.  I tried to say and do the right thing, but I don’t know if it was.  How do you tell your daughter things that she needs to know but you are afraid to say outloud?  Things I was afraid to think.  I believed that when the day came to watch Jacquie leave home, I would be ok with it, because I would know I had done my best to prepare her for what was ahead.  I knew I would miss her terribly, but she would always be able to come home, not just the home in my heart,(because she would never leave there), but our home, here in Clarence Center.  Why didn’t she come home this time? My darling daughter Jacquie- You are continuing your fight and your life continues to impact so very many people.  The Vera Bradley presentation went well, and even if we don’t have a “Jacquie” named for you, many more people now know your story, and will help us help you keep fighting for a cure.  You are still managing to show the world who Jacquie Hirsch is and what her life meant.  I hope youlike the Tink shop and your “wall” at the gym.  Your dad and TJ did an incredible job- what a tribute to you. I hope people will take the time to visit the gym and see the Tink shop and the wall, everyone who has seen it is overcome with emotion and tells us it is a wonderful way to keep your memory and your dream alive.  The sun just broke through the clouds as I write this, I am sure you sent it so the warmth will dry my tears.  My special Angel Jacquie, I love you with all my heart and soul, and I will love you forever and ever and always.  Please don’t leave me, and keep trying to help me through each day. Help me to try to understand why you are not here with us and help me to be not so angry that you were taken from us too soon.  Please say a prayer for Alicia’s cousin Doug, that he may find the strength to fight the way you did.  I love you,my Jacquie.  Love, mom