March 2009

March 28th 2009 – Day 203. 29 weeks. For us.  For Jack’s and Gary’s family and friends, they are just beginning their journey, not even a week for them. Please say a prayer for them.  They, like Jacquie, were taken from us too soon, because of cancer.  And now their families and friends will start the long and painfu journey that we know so well.  Please say a prayer for Patty, that she and her family not have to begin this jouney too.The first time I heard the song Casey mentioned, by Alan Jackson, I was driving.  I had to pull over to the side of the road because I could no longer see to drive, through my tears.  I BELIEVE the song was written for our Angel, Jacquie.  I BELIEVE that Jacquie sent it to us, to let us know she is fine.  I have begged her to come back to visit me, but I know she can’t.  Maybe this is her way of letting me, and everyone else know that she hasn’t left us, that she is still with us- every minute of every day. When you hear the song, and listen to the words, your mind will say “This is Jacquie’s song”. You will also hear the questions that we all continue to ask.  And I don’t think the song answers them.  I wonder WHY our Jacquie had to be the one to go.  And I find myself, more and more, being unable to be around other mothers when they are with their daughters.  It seems lately, every time I go somewhere, I see moms and daughters doing things together- shopping, laughing, eating, even arguing- but they are TOGETHER. I am so jealous.  I just want to know WHY they have their daughters and I don’t.  WHY Do they get to pick out bananas at Tops and talk about making banana milkshakes when they get home?  WHY do they get to drive around in their car together and sing songs so loud I can hear them?  WHY can’t I do that with Jacquie anymore?  WHY did Jacquie have to be a “Borrowed Angel”?  And now, what do I do without her.  It has been 18 months today that Jacquie was diagnosed.  WHY does my Jacquie have to have that number? “A daughter needs a mom to remind her that there is a rainbow after every storm”.  My Darling Daughter Jacquie, WHY did you have to go through that storm?  And how can there be a rainbow without you here to make it?  Every morning when I sing you the Rainbow Connection song, I am reminded that the song no longer holds the same meaning as it did when I was singing it to you while I was holding your hand and touching your skin.  I hope you have found your rainbow, my Jacquie.  And I will continue to wait until the day when we see the rainbow together.  I will love you forever and ever and always, my precious daughter.  Stay with me, please don’t leave me.  I am always with you.  I love you,  mom 


March 23rd 2009 – What happened to our plans, my Jacquie?  One year ago today, your dad and TJ were in New York City with us.  It was Easter Sunday, and we were having the Easter dinner you planned.  We had ham from the Honey Baked Ham Company, and all the trimmings.  Remember how we scrambled to go on line and get one ordered so it would be delivered to Hope Lodge on time?  Well, it came and you enjoyed it so very much. And you managed to eat well and not be sick and it was one of your “good” days.  And you planned our Easter dinner for this year.  But you won’t be here.  And I have to ask “why?’  Why are we going to have to be without you?  Why can’t I talk to you and have you answer me back?  Why can’t I hold you?  Why are parts of me so empty and filled with hurt, pain and saddness?  Why is it there so many other families will feel the same way this Easter, and all the other holidays to come?  Why can’t we make this horrible disease go away?  Why do I feel so helpless ?  I have been working on your “Tinker-Ball”, and all the while I am angry that I have to be doing it this way.  We should be doing it in honor of you, not in honor of your memory!   I am so tired of trying.  I am tired of feeling this way.  I am tired of having to keep telling myself that this is not a nightmare that I will wake up from.  I am tired of the numbers that come into my head even when I don’t want them there. I am tired of being afraid. My Darling Jacquie, please try to understand how hard I am working to do the right things, but it is getting so hard to do sometimes.  Be patient with me, stay with me and keep letting me know that you are still near me.  I will love you forever and ever and always, my Jacquie.  Love your mom


March 21st 2009 – Day 196.  Today, the sun was out and I saw a robin on the front lawn.  It was walking under the pussywillow tree that still had it’s buds on it, the buds that stayed on it all through the cold winter.  The poor little tree took a beating with the terrible weather, but it never lost the soft little buds. When Jacquie was little, and she would find a pussywillow tree, she would pick off a couple of the soft fuzzy buds and rub them on her cheeks and mine.  She loved the way they felt on her soft skin.  We would laugh because they tickled and then we would make a wish on them.  I think Jacquie is like the tree, she took a horrible beating but she never lost her sparkle and her shine- her smile was there until the end.  Today, I wanted to pick some buds and rub them on Jacquie’s cheek and hear her giggle, but I can’t.  I made a wish, I wished that she would know that we understand how hard she fought and we know she never gave up fighting. I wished she would know that we will always be in awe of her bravery and courage. And I wished I could hold her in my arms again. I spoke with a mom today, who has a wonderful little boy who just had a transplant in August, to help him fight his A.L.L.  Jacquie knew this cute little guy, and both she and TJ spent a little time with him while they were both in Roswell. As I spoke to his mom, I became sad again, sad for this mother and father, who so desparately want to change what they cannot change.  Sad for a little 8 year old boy, who knows more about medications, chemotherapy,radiation, hospitals and leukemia than anyone should ever have to know, but especially and 8 year old.  Sad for his 6 year old sister who lives a life that is no longer “normal”.  Sad that this horrible disease will continue to ravish and destroy wonderful lives until we can find a way to stop it.  Sad because there is nothing I can do to help change what is now their life. “A daughter need a mom to show her how to use humor to lighten heavy loads”.  I know that this is an important “life lesson”, and I know that Jacquie was so very good at it. She would always try to find a way to brighten up a difficult situation.  I wish she could help me now. I could use some of her laughter and wit, and her smile to make the days less painful to get through.  So many of the things that Jacquie learned in her short life mean so much to me now. I look back at her life and am amazed at what she taught us about how to live and how to be  better people. I try to find humor in my days, but it is hard without my Jacquie here to show me. My Darling Daughter Jacqueline, as always, the tears come so much easier than the words.  My heart has so much to say to you, but my brain cannot function well enough to put the words down on paper.  I will keep singing and talking to you and I hope you will hear what my heart is saying to you. We had our meeting the other night for your first “Tinker-Ball” Formal Dinner Dance, and you are going to be so proud of us.  We are going to have the very best “Tinker-Ball” in your honor.  So many of your family and friends are going to make sure of that!  You will see how very much you are missed and loved, and how much people want to continue fighting for you.  You will know, without a doubt, that you will live on with us forever.  Tonight, I hope you visit me in my dreams again.  If you can’t be with me here, I will be with you there.  I will love you forever and ever and always, my Jacquie. Love mom
PS Happy Birthday Lil Lil,Ali, from your Angel Above


March 16th 2009 – One year ago today we were celebrating and making plans for “next year”.  We were celebrating Jacquie’s Day 25 out of transplant and her “counts” coming up.  That meant her white blood count was increasing in response to the new bone marrow- it was great news and we we so very excited and optimistic. Jacquie was 1/4 of the way through her journey of 100 days until she could go home to Clarence Center.  Jacquie was also busy planning how she would spend next St. Patrick’s Day, since her brother and cousins had to party without her while she was in New York City.  She decided she wanted to do the whole thing- parade, green clothes, green beer and of course- food. Jacquie even thought she might wear a silly little green hat to go with her green elf shoes.  We had it all figured out, or at least, we thought we did.  We didn’t ever stop believing that Jacquie’s would be here for this St. Patrick’s Day. Yesterday was very hard on all of us.  I think we would have perferred that the day just go away, and it would be Monday.  Most days I just wish the day would go away.  I am so sad, so angry, so everything- that Jacquie wasn’t here yesterday, dressed in her green clothes, shoes and silly hat.  I am so sad that she won’t ever wear her outfit for all the world to see.  I am so sad that all the rest of the St. Patrick’s Day parades will not have our Jacquie watching them.  Yes, I realize that it is not considered a “major holiday” to most people, but it was a day of fun for Jacquie, a day when she could be with family and friends and share good times and memories.  Now she can’t do that, and I am hurting again, for memories that will never be made.  How can it be that this is all there will be for someone who had so much more to give and to do with her life?  WHY WHY WHY??????? “A daughter needs a mom who knows how to let loose and have fun”.  This I did not teach Jacquie, she taught me.  Jacquie was born already knowing how to enjoy life. She gave all of us lessons in living each day to the fullest and making the most out of every second of your life.  She taught us that nothing should be taken for granted, and that at the end of the day, you should be able to look back on your day and say “wow, what a great day this was’.  And if you couldn’t say that, Jacquie would say that you had to change it to make tomorrow better.  When TJ and Jacquie were little and I would put them to bed, (most days I was ready to sleep before they were) we would talk about what our plans were for the next day and what we had to do. TJ. the more serious of the two, would always just listen, and not say much.  Jaccquie, on the other hand, would ask “when will we play?”  I wonder now, did we play enough?  Did we go to the playground enough?  Did we have fun as much as we could have?  Did I “let loose” enough?  Oh Jacquie- did we have enough fun memories for you to take with you? 
My Daughter Jacquie,  each day that goes by without you here, takes a little more of my heart.  The tears come and go, on and off all day long, but the pain remains. Your friends and our friends are so kind with their words and their prayers, and we are all very thankful to them.  But, you are not here.  There are no words that can change that.  I hope you keep by my side, dad and TJ’s too, because we still need you so very much- we always will.  You are our “four’, you are still the Jacquie part of the “Hirsch Family”, that too, will never change.  I love you, my Jacquie, forever and ever and always.  I miss you, and I hurt so much without you.  You are my “Rainbow Connection”.  Love, mom


March 11th 2009 – 186 days.  Will it ever end?  Sometimes it is so hard to write these “updates”.  I feel as though nothing has changed, there is nothing to update.   When Jacquie was in and out of the hospitals, and recovering from her bone marrow transplants, writing was so much easier, most of the time, because she was making progress towards recovery.  Remember all the “numbers” that I kept track of and kept writing about?  Her temps, blood pressure, heart rate, white blood cell count, red blood cell count, platlet count, kidney function, liver function, even laps around the halls and time spent out of bed in the chair- all these numbers and more, meant something important to Jacquie and her fight for life.  Now the numbers just mean lonliness and days without her. The numbers tell me how long it has been since I held her.  The numbers tell me that time has not yet begun to heal the pain and grief that I feel.  And the numbers tell me that time does not heal all wounds.  The numbers on the clock tell me that it is time to get up in the morning and face another day without Jacquie.  And I wait impatiently for the numbers to tell me I can go to bed at night and be with Jacquie in my thoughts and dreams and pretend for a little while, that she is next to me. “A daughter needs a mom who knows how to put a smile on her face.”  The day Jacquie was born, she put a smile on all our faces, oh how we loved that little smile and tiny little nose.  As she grew, our smiles continued to grow with her, because Jacquie knew how to bring happiness and joy to people.  Her smile made others want to smile, and her laugh was contagious.  Jacquie had “down times” just like everyone does, but hers never lasted long and she usually would forget what she had been “down ” about in the first place.  It was hard not to smile when Jacquie was around, she loved life and loved her family and friends.  Now, smiling is not so easy.  It is hard to think that Jacquie isn’t here to share a smile when I need it, or when I need to smile at her because she needs it.  In my mind, I see her smiling and I hope she is smiling because she is happy and at peace.  I hope she knows that the tears that fall from my eyes are because I miss her and her smile, not that I don’t want her to be free from the pain and suffering she was going through.  I would never want her to still be suffering, but then here I am back at the same question, “Why did Jacquie have to suffer at all.”  Why did we have to let Jacquie go to release her from her pain when she shouldn’t have been in pain to begin with?  WHY WHY WHY. My Daughter Jacquie-  Days go by and still I cry.  I can’t find a way out.  I miss you so much, each day reminds me of what you never had a chance to experience, of the dreams you had that will not come true.  We are trying so hard to make your fundation succeed and make you proud of us.  We truly BELIEVE that because of you, your foundation will be part of finding a cure for leukemia and cancer. But, WHY couldn’t someone have found it before you needed it?  I guess, like my other questions, that too will never be answered. Stay with me, don’t leave me because I can’t do this without you. I hope you are happy and well and missing us too.  I love you my Jacquie, I will forever and ever and always.  Love your mom


March 6th 2009 – One year ago today, you amazed the medical Staff at Memorial Sloan Kettering Cancer Center.  You were discharged after only 15 days post your first bone marrow transplant!  Do you remember how shocked we were when the doctors came in for rounds the day before and announced that you were doing so well, they were going to let you leave the next day?  Do you remember how panicked I was thinking that they were discharging you too soon?  They had told us to expect a 25-30 day stay, what happened to the other 10 days of being monitored 24/7?  You were nervous, but excited.  I knew I had a lot to learn about taking care of you post-transplant , I was so very afraid.  But you weren’t. You were only a little afraid, but YOU kept reminding ME that they wouldn’t let you leave if they didn’t think you were ready or if they didn’t think I could be a good caregiver for you.  You had so much more faith in me than I had in myself.  Every time I would go out of your room and into the hall for a good cry, I would hear your sweet voice in my head telling me I could do it, and that you loved me.  You told me there was no other person you would want by your side, taking care of you.  Those words played in my head constantly, and every time I would start to worry again, I would listen to you.  You were always so wise and caring.  You made me be the best I could be, taking care of you was the most imortant thing I had every done in my life, and I WOULD NOT let you down. You amazed me every minute of every day. Six months ago today, your body told you it was tired.  You couldn’t fight anymore.  You amazed us by letting us know that it was time to say goodbye. Oh, Jacquie, I miss you so very, very much. I don’t even know what to say anymore, the words should NOT have to be said. We should NOT have to be here without you.  We should NOT be planning a formal dinner dance that you will not be the guest of honor for, but instead, it is being held in memory of you.  WE SHOULD NOT HAVE TO BE LIVING WITHOUT YOU!!!!!  I am so angry, and sad, and lonely. Madison must have made you so proud at her ceremony last night.  I hope you listened to what she wrote about you, I hope everyone there did.  We will put her story on the website so others will be able to read about what a 7 year old little girl thought about you. It’s amazing how the lives you touched know no age boundries.  How is it possible that you weren’t allowed to stay here with us and continue to bring happiness, hope and love to more people?  My sweet daughter Jacquie, there are no words today, only endless saddness for the dreams of a year ago being taken from us.  I wll love you forever and ever and always. You were always my Angel, and you always will be. Love, your mom


March 4th 2009 – My Dear Daughter Jacqueline, today is day 179, still too many days have gone by without you.  But today, I did something special for you. Actually, Bree and I did.  We went to Mike’s in Hamburg and I got my tatoo for you.  I know you and I had talked about it many times, and we were supposed to go together when I finally decided what I wanted to have permanently put on my skin. I really loved your “Tink” tatoo, and thought maybe I would be able to design something similar.  I thought you might not be too keen on the idea of sharing the same tatoo as your mom.  When you got sick, the tatoo just got pushed to the bottom of the priority list and forgotten.  Recently,when your friends and cousins started getting them, I knew I had to decide what I wanted- that it was time to do this.  Mike found all your paperwork and your design for your “Tink” and helped me put down on paper what my heart wants you and everyone elso to know.  Then, he gave me “our” tatoo. It’s your original design with some of my additions. I know you watched me while he was doing it, and you probably thought “OMG, she finally did it!” I hope you like it, my Jacquie. It is for both you and T.J., and as it says, “I will love you forever”. Bree got her third, yes third, tatoo, she had Mike do your “Tink”, it’s just like yours.  And then she had him write “Forever Jacquie” over the “Believe” ribbon tatoo she already had.  She’s really proud to have these for you, all of us are.  I realize that some people may not approve of tatoos, and I don’t care.  It is my way to let everyone know how much I love you and T.J., and it makes me happy to have your signature on my arm forever. If anyone should ask about it, I will tell them about you and I will explain about your dream, your fight and your foundation. I will let them know that we are planning to be part of the reason that our world will someday be cancer free. And, I will let them know that you are the reason for so many people giving their time and donations to make sure that all this happens.  Usually, I write quotes from the book you gave to me on my birthday in 2005, about why a daughter needs a mom.  Today, I will make up my own quote about why a mom needs a daughter.  “A mom needs a daughter to let her know that all is right with the world.” When you were born, our lives changed forever.  Your dad, brother and I became  “four” with you, and the world was as it should be.  You taught me so much and I learned more from you in 23 years than most people learn in a lifetime.  You are what made our world right, and now without you, things are not as they should be.  I keep saying “This isn’t right, it shouldn’t be this way”. Other peoople say it too.  For all of us here without you, the world has become a foreign place to live. It will never be the same.  The world and our lives will continue, but never will we be able to have back what we have lost. The world is missing someone very special and someone who showed us all a better way to live our lives. So my Jacquie, I hope you approve of “our” tatoo, and I hope you are glad that I had it done. I love you so very much. Everyday I still have to argue with myself about why I should get out of bed. I think I am really arguing with you, and you always win. Stay with me, don’t leave me to do this on my  own, I can’t.  I will love you forever and ever and always, love your mom.