I have also started to write Yossi's website into a book. I have not gotten really far. I originally wanted to merge the updates with letters I wrote to Ped-Onc along with some extra information in the middle of it of this. One friend who I sent a copy to said it was too confusing. The other problem is that I have very few updates in the beginning, and then very detailed updates towards to end, and during his first transplant. So I need to work out those kinks. I have no publisher, or agent. I figure, let me get started writing and see where it takes me. One bonus is that I feel closer to Yossi in writing it. While on one hand I am reliving it, I am remembering parts that I did not remember in such detail. It is neat in a way to go back to Ped-Onc and see what I wrote then. On the other hand, it is very hard to see kids who were struggling then who are doing well now. I don't wish bad on them, it just makes me sad for myself.
Shoshana is walking. I put the blue and red blanket with the big pictures of Yossi on it on the floor for her to see. She laughs and plays with it. I think she will have some concept of Yossi, and the fact that she is missing him when she gets bigger. I want him to be a part of her life, even if he technically isn't.
Recently I was speaking with a woman about my loss. I mentioned how I am very careful not to say I have "all" my kids because I don't. She said to me that if the soul is no longer bound by the body, then I *DO* have all my kids. Because Yossi is with me. It was an amazing thing for her to say, and I really appreciate it. That's it. Short update.
For me, my grief has become something I have become adjusted to. Remember how upset I got with the “How are you?” question? Well, now, it doesn’t bother me. I realize that no one cares to really hear the answer. I could answer anything in the world, and people would not hear it. I do answer “Fine” most of the time because that is what people want to hear. To my close friends, I share the truth. Mostly I have good days. Days where I think of Yossi, and yet I do not cry. Days where I meet a stranger and I lie and say that I have a 15 year old son. Days where I have fun, either sewing or embroidering. The bad days are fewer and more in-between. That said, when I have a bad day, it is just as bad. And I can have several bad days in a row. And nothing special can trigger it other than the fact I miss my son with all my heart and soul.
This weekend I went to Chai Lifeline’s 8th annual retreat. Michoel did not go with me; he stayed home with the older kids. I took Shoshana. I can honestly say that I had a great time. I met a lot of women I only knew online. I laughed and talked and listened and learned some. (And I ate a lot of great food!) The sessions we had were terrific and everything I had hoped they would be. The women were honest and open. I was proud that I didn’t really cry. Then, after the tree planting, as I walking back to the main dining room, I just lost it. It is so beautiful up there. I saw the cabin where Yossi stayed. And it just hit me; he should be up there, not me. He loved it there. He had such a great time. He cried when he came home that he wanted to go back. He had planned to be a counselor when he got old enough. I heard from one of the wonderful young men who was a waiter the year that Yossi was there. He said that they had 6 counselors this summer who had been campers. Another dream of Yossi’s that will remain unfulfilled. It was so special to speak with counselors who knew Yossi. I also heard that one of Yossi’s friends got engaged. He would have been so happy for him.
I finally got around to making a page for Yossi’s library. As of right now, I do not have it linked backed to here. But I have the list of books I have. (It is very small.) I also started a wish list. If you own a book you would like to donate, feel free to mail it to me. (Email me for my address.) I would like to take new books and used books in excellent condition. I don’t want any really outdated or old books or really “very-well-used” books. I want this library something that I will be proud to put Yossi’s name on. My friend husband works in a Judaica bookstore. He is willing to give a good discount to anyone who orders from them. (He and his wife are my friend’s who named their son after Yossi.) You can view the list here Yossi’s library page.
Thank you to anyone who still takes the time to check and see if there are any updates.
Yesterday, a woman posted to a list that I am on about another lady in her neighborhood whose 13 year old son was killed in a car crash. She asked everyone to hug their kids and not to feel bad about the things that they don't do. She was mentioning about how this boy never put away his shoes, and how his mom didn't want anyone to move the shoes in the hallway, and people were tripping over his shoes. It hit me real hard to read it. All of a second, I was right back there in the beginning, when the pain is so raw and so, well, painful. I realized that even though this lady thought she could understand what this mom is feeling, there is no way. I immediately knew, but she did not. I guess the only thing you can compare it to is childbirth. Until you actually have a baby, you just don't understand. You can watch as many videos as you want, and practice your breathing, but until it happens, you have no idea.
I also realized something else. I think that there are two me's. Two faces I have, or two masks that I wear. I have one face that is the real me. I can open up with my friends on JP Net, and tell them how I really feel. I have friends from "before" who knew me back when I was innocent and carefree. I guess they know the inner me. Then there is a me who presents herself to the outside world. I go shopping at the fabric store, and smile and answer questions politely. I have friends who I write to online who know of Yossi, yet most of what we talk about is sewing or embroidery or baby related. If I mention that I hate January, they get a little surprised, because they do not associate Yossi and death with the me they see. (I think that I have made a few friends from after-Yossi's passing who see the real me.) I don't even know where I am going with this, and Shoshana is distracting me from really writing what I had planned on.
Right before Chanukah started, I got a nice email from Miriam Zakon at Horizon's Magazine. She wanted me to write an update! So, look for that in an up coming issue. (The 10th anniversary issue.) It was such a thrill and an honor to be asked to write for them. I can honestly say that I am doing better. I hurt and I miss him, and at times I think that I *WILL* wake up from this horrible nightmare. But I still feel that the pain has pushed itself deep inside. I am slowly starting to do some of the things I used to do. I am reading to the kids more. (Shoshana needs to hear books to help her speech, as does Sruli.) Michoel is trying so hard to work with the kids and do things with them. He is still struggling terribly.
If you live in VA, and want to get a childhood cancer license plate, I finally got the forms. We need to collect 350 paid applications by May.
My little princess is crying, so that is all. G'night.
Purim was very hard, as it has been these past three years. I was lucky in the sense that my friends were very supportive and let me know that they were thinking of me. For the yartzeit, we planned a small siyum (completion of learning) for our community. We put a small announcement in the school paper and they announced it at our shul. I was very worried that no one would come at all. Well, I did not have to worry one bit. Every friend who would have wanted to come did. (Well, one friend could not come, but she did explain to me and I understood.) I was a total basket case all day. I left the bulk of the shopping for the last minute, hoping to keep busy and not think too much. I spent a lot of the day crying. And not believing that we were doing this a third time. I finally took a few minutes to write a speech. I was the first one to speak. Here is what I said:
As a side note, Yossi spent not only his school years here, but because I worked in this building, Yossi spent many hours here "helping" me. RTA was almost like a home away from home to Yossi. In fact, Yossi's upshern was right downstairs, in the gym.
Yartzeit means "year's time", meaning, another year has past. Three years since Yossi's passing. I want to take this time of remembering Yossi, and try to turn it into something positive. For me, in order that Yossi's short time here not be in vain, I would love for everyone to walk away with something good about Yossi. Yossi's life was filled with joy and goodness. He was always happy. Our social worker from Chai Lifeline describes Yossi as being lichtig. He has a light that radiated from inside. (I say has, because all you have to do is look at a picture of Yossi and you will still see that light shining through.) Yossi enjoyed life, and he rarely complained about his situation. When he was 9 and he got leukemia, he was separated from his friends. After his transplant, it was even harder. But still, he always maintained a smile and was very upbeat. I know that he was very happy to rejoin his class in 6th grade. In 7th grade when he relapsed, he was happy that he was allowed to continue going to school through his treatment. The night before we left for MN was the night of Yonatan's bar mitzvah. I was standing with my friends and crying. Yossi spent the night having a fabulous time. I will never forget his final words to you, his friends, when he called up before his final surgery. It was mishmar, and I think that Rabbi Sherman had him on speaker phone. As he was saying goodbye to you all, he said, "Don't worry about me; I will be back." I guess those words will have to be filled by the coming of Moshiach.
Since Yossi's death, I have continued to maintain his website. I write about our grief, and how we are learning to cope with this hole we carry around with us. I try to emulate Yossi in my day to day life, but sometimes it is so hard. Sometimes I tell myself, "I am not Yossi." What has continued to amaze me is how three years later, Yossi is still reaching out and touching people. People who have never met him write to me about how touched they are by his story. This is a letter Michoel got:
Michoel, Shalom! My name is Jose B**** (Yosef Ben Zion B****), I live in Portland, OR. I am married and have a two year old daughter, Ariela. I came across Yossi's (Z"L) page and was really touched by his life. You see, it has been a while since I have been to Shul, it has been a while since I've said a prayer. Yossi's life has made me want to get closer to H" and I will. It shall be for Yossi's merit. I will say Kaddish for Yossi. Sincerely, Jose B****
I have a cyber-friend who I have never even met in person. Two years ago when her brother graduated from high school, he lit a candle in memory of Yossi, who would not be graduating that year. Imagine, he never even saw the site! He knew about Yossi from what his sister, who never met Yossi, told him. When Yossi was post-transplant (the first one), I spoke with a friend I knew from way-back-when. Her son was newly diagnosed with leukemia. Yossi met this young man in Camp Simcha. I got an email from him a few weeks ago. He is on shlichus in another country. He told me that a few of them there have decided to launch a new program called the "Jewish quiz" which will involve over 500 children in schools all around the city learning more about yidishkeit. He is planning to dedicate it in memory of Yossi Z"l.
In the last three years, I have learned a lot of things. I have learned what wonderful friends I have. Some of you have listened to me complained. You have cried with me. You have been there for me, and supported me. There really are no words to express how I feel, and I think that each and everyone of you really know it. I also want to thank everyone who has helped me with raising funds for the library. When Yossi first died, I had this burning desire to see his name put somewhere permanent. Now that I know it will happen, I am fine with waiting until it can be done with dignity and grace. I appreciate all the help in continuing to raise money to buy books, as well as the suggestions I have received of which books to buy.
So to end with some good we can all do, I only ask that you try each day to do something for Yossi. I ask that you keep him a part of your lives by living for him. I try to picture how he would look with all of you, and I know how proud and happy he would be. He wanted to be a part of your yeshiva. By learning for him, you are including him. Life is full of challenges. When we are facing something hard, try to remember Yossi, and face the test with his grace and faith. Smile even when you do not want to. And as Yossi once said when asked how he was, he replied, "I can't complain, and even if I could, I wouldn't."
I know Yossi is here with us tonight, and I just want to say how much I love and miss you.
Next to speak was Rabbi Klestzick, the principal of our school. It took him a little while to compose himself to speak. He mentioned that he lost his best friend from leukemia when he was 14, and he said that just as he and his friends never forgot their friend, he knows that Yossi's friend's will not forget him. He spoke also of the great miracle Hashem made when Yossi was not in remission and the whole community fasted for Yossi.
Finally, our friend and neighbor Stuart Cantor spoke. I hope to get a copy of what he said since it was just perfect. He started off with saying that he did not how we did it each day. How we continue to go on. He talked about Purim, and how everything that happened was hidden. He compared it to Yossi's death, and how the meaning of it is hidden from us. He ended with that the next holiday is Pesach, and just as that is the time of revealed redemption, so too shall it be for us and everything will be revealed.
Overall, for me, it was a perfect and fitting way to remember Yossi. They ended with kaddish, the mourners pray. That was so hard for me to hear. I cried and cried. It just does not seem right to hear those words for a young child. But as I was saying, the night was so perfect for me. Many of friends spoke with me about their memories of Yossi. We all cried together. Noa and I spoke at length. I think that it is such a good thing for me not to cry alone, and for everyone else to be able to think about Yossi and to speak about him. Rabbi Chait, the Rosh Yeshiva (head of the boys high school) told me that in the last few days the boys have been speaking a lot about Yossi. He said he feels that he is coming to know him, and that he feels that it is a great loss not to have Yossi part of the class.
Yesterday I went by myself to see Yossi. (I went again today, just because the dates feel close together this year.)
OK, so you who have been reading this page for so long know that I tell things as it is. So let me tell you this. My close friends in NY called me leading up to this day. My friends here all told me many times how much they were thinking of us. Emails have been pouring in today from people who remembered Yossi. It brought so much comfort to me. I can't stress this enough. IF YOU KNOW ANYONE WHO HAS LOST SOMEONE -- CALL THEM!!! EMAIL THEM!!! SEND THEM A CARD!!! It truly does not matter what you say! The fact is that you are showing you care. Trust me on this, if you do not know what to say, send a card or an email. Tell them you are thinking of them and remembering them and their loved ones. IT MEANS THE WORLD TO US WHO ARE GRIEVING!!! I am telling you because there are people who I would have thought would have at least sent an email at the very least and did not. IT HURTS. OK, enough said.
Three years is too long. I dread 10 years from now when I will reach the point where Yossi is dead longer than he was alive. And with that, I will say Good Night. Thank you so much to all of you who sent emails and prayers over the last few months. I don't respond to everyone. There was an incredible email I got from a woman on my sewing list that I hope to post in the letters section soon. Bye!
If you can get the magazine Horizons, my article is in the 40th issue that just came out now. I have heard from one of my friends who said they were really touched by the article. More so than any other one I have written.
I am off to CA in two days to visit my family out there. I am of course very happy to see my grandparents, who I have not seen in over 10 years. But it is very bittersweet. I took Yossi and Goldie and Shauly there. Goldie remembers. I wish I knew how much Yossi remembered. That is so hard. Not only losing him, but losing those little things. Those memories, and those, Oh yeah, I remember that. It was like that when I went to clinic. As we left the building, Shauly started saying he remembers the ramp. And I started to point out, this is where we came at Chanukah when Yossi had an infection; and that is where I brought Bubby when Yossi had his appendix out and we surprised him. It just sucks your breath away when you are having a fine day, and all of a sudden, a memory comes out of no where. I can't tell you how many times lately it has really been hitting me that Yossi is dead. It is so final. Seeing Yonaton drive his families car down the street, and knowing that I will never see Yossi do that. My friend's older kids are now having babies, and again, something else for me to miss out on. Some days it is just so hard.
It just blows me away that I can be doing so well, and then I have an incident that just puts me right back in the beginning when the pain is so raw and do deep and just cuts through your heart like a knife. (Not that I don't always have pain, but most days it is not that raw hurt. I don't think that a person can live with such deep pain everyday, which is why we learn how to cope/live again.)
Rosh Hashana was very hard for me. I went to shul to hear the shofar blowing. On the second day, I got there too late. I stayed in shul to hear it at the end. There is one part in the service that is very emotional. It talks about who will live and who will die. I have avoided this one for the past three years. But this year, I messed up, and was in shul when they came to it. I started to cry, and just could not stop thinking about Yossi. It says that if you pray, give charity, and repent, G-d will abolish the bad decrees. We tried so hard to save Yossi, but it was not meant to be. So that sort of set the tone for the last few days. I have been feeling very down for a while now.
On July 14th, Yossi should have gotten his drivers license. Obviously, he didn't. One week eruv Shabbos I needed something from the grocery store. If Yossi had been alive and well, he could have run there to get it. Instead, I am stuck waiting another 2 years until Goldie is old enough. It isn't just that I was robbed of my son. I was robbed of the milestones of having an older child.
Back in June, Goldie had her graduation. When Yossi first died, I thought that her graduation was going to be horrible for me. I was dreading it for so long. But since none of Yossi's friends were graduating, it really was not all that hard for me. She looked beautiful and it was a very nice ceremony. It is so hard to believe that I have a 14 year old daughter. But then again, I should also have a 16 year old son. And as much as I play mind games with myself and pretend that I do, I have no idea what it is to have a 16 year old son.
When you ask Shoshana where Yossi is, she answers you, "Up, sky." She doesn't even know what she is missing.
Well, that is all for this "update". Things continue on, and each new day just brings us farther and farther from Yossi.
The library is really moving along. I got another shipment of books (thank you Aron!). I am planning on giving the books in to the school on Yossi's upcoming yahrtzeit. It will not be a big dedication because I am working on something even bigger for the next yahrtzeit (his 5th, unless Moshiach comes!).
One other thing ... in one of my updates I mentioned how I felt that I was moving farther away from Yossi. I got some nice emails from friends who said that I am really moving closer to him. Closer to the time we will be reunited. That is a lovely thought, but what I was referring to was the last time I hugged him. As Yossi lay dying that last week I laid right next to him and kissed him a million billion times. I told myself at the time that this was going to have to make due for the rest of my life. It is the hugs and kisses that I miss. The physical aspect. One friend who lost her son pointed out that when we are reunited, whether it will be through Moshiach or death, it will never be the same as what we have here. I guess I just sort of accept that since there is nothing I can do to change it.
Thanks for listening to me. Good night!
Chanie showed me an assignment she did for school. It is called "It bugs me when ..." and she had to fill it in. This is what she wrote:
The thing that bothers me most is that Yossi is dead. It bothers me so much because he is my brother! He did not get a very long life because he died when he was only twelve. I loved Yossi very much. I feel very sad that he died.
Words cannot quite describe such a special person, such a unique
soul, as Yosef Chaim Paley, but I will try to do my best. It has been
four years since his passing from the world and he still floats
around my mind fairly often.
This is not just because what happened was tragic, although it was,and this is not just because I see his family often, although I do, but this is because of the resounding impact that he made on everyone around him, especially me. You see, as much as Yossi tried, he was not like other boys, he was special. His countenance and maturity were that of someone much older.
After Yossi went into remission, everything was different. He had a different level of appreciation for simple things. He lived every day, and shared his past experiences although this was noticeably difficult.
There was one particular day in class that will never leave my memory. Yossi wrote a paper for Mr. Lewis, about two brothers that came to visit him every week when he lived with his grandparents. He described the feeling he had when they would come by, the feeling of joy and happiness and normality as he talked and laughed with them. His eyes told the story as he read the paper for the class and the appreciation was apparent on his face. No, he was not the same boy as before, he was different, he was the same age but a terrifying, tragic experience older.
Yossi was a boy everyone liked and admired. He was kind, and funny, careful not to hurt people's feelings. He confided in me how he felt that people were spoiling him, giving him presents that he felt he did not deserve. As I stood there and listened to an eleven year old boy, tell me that he felt spoiled when he was the one who had the fatal disease that would soon claim his life, that is when I concluded, no, he is not a normal kid, he is a jewel. As I look back, these four years later, I remember Yosef Chaim. I remember his patience and kindness, his laughter and his tears. I remember the day I heard the news, and the abyss of depression. I remember the funeral where I wept for the loss to the world, and to his parents, grandparents, siblings, friends and community. I remember him not only because I cannot forget but also because I want to share with you his legacy. He affected everyone from his friends and family to his doctors and nurses. He embodied endless perseverance with struggles whether big or small. He taught everyone to be happy and to greet everyone cheerfully. So, my friends, on the anniversary of his death, I share his story, and beg you, remember what Yosef Chaim stood for whether you knew him or not, and when you need strength and you are not sure if you can complete a task or do something that you know you should do, give the extra effort and remember Yosef Chaim Paley.
I have an auction up on Ebay that is for Yossi. All the proceeds from this auction will go to buy books for the library. Click here I have to say that I am really disappointed in how it is doing. I really thought that it would be a lot higher by now. I had thought that people would realize that they are not just bidding on the outfit. It is the books that I care about. Oh well.
On another sad note, Dr. Russell, who was the head hem-onc doctor here has some terrible news. His daughter was diagnosed with Leukemia a few weeks ago. To make matters worse, at first they were not sure if she had AML or ALL. (Heard that before.) Now I just heard that she did not go into remission after the first induction. (Heard *THAT* before too.) She was high risk anyway because of her age. It must be so hard for him since he is a hem-onc doctor. Not only has he seen so many kids die of this, but he knows EXACTLY what each and every thing means. No blissful ignorance for him. Please keep this family in your prayers.
Good night. I love you Yossi.
It seems so fitting to be remembering all the reading Yoss would do. Tonight Yonatan, Don, and one other boy (please forgive, you only told me your name about 100 times) came over. They spent a couple of hours attaching all the labels into the books we have to give to the boys high school. They were very excited to see so many books. It makes me feel good to know that something is being done that will make everyone involved feel good.
Shoshana's favorite pastime right now is watching "Yossi moo-moos". These are movies from when the kids are growing up. I took a ton of video, so there are a lot of them. I copied them off the 8mm tapes onto VHS tapes. So each tape has about 6 hours of viewing time. It is nice and sad at the same time to hear and see Yossi. I used to think that I had forgotten his voice. But even his high pitched tiny little preschool voice is still embedded in my head.
Finally, this is a funny story that is really not funny at all. When Yossi died, we were told to get the head stone up by the sh'loshim (30 days from death). We were too distraught to put a lot of effort and thought into the stone. We were also told to put all Hebrew on it. So that is what we did. Then we heard that there was someone who didn't know whose grave it was because the stone was all in Hebrew. I asked if I could put a foot stone there in English. Since it wasn't the "real" stone, I was told that it would be OK. I spent almost a year coming up with something acceptable. (How do you sum up someone's life in a few lines?) I had:
Yossi Chaim (z'l) Paley
April 14, 1988 ~ March 10, 2001
Beloved son, grandson, and brother
Our brave young hero.
Sweet, kind, courageous, yet humble.
We miss you and love you forever.
OK, so they get the stone up and I am satisfied with it. I took a picture to send to my cyber-bud Rachel. Michoel looked at the picture and said, ï¿½They spelled courageous wrong.ï¿½ Yup, sure enough, it turns out that Yossi was couragous. So I called the monument people up and they are very nice. They say they will fix it. Finally, after waiting 6 months, my in-laws called me from the cemetery the other day. Now there are two foot stones by Yossi's grave. And not only that, courageous is STILL spelled wrong on the new stone! If it wasn't so sad it would be funny. (They are very nice about it and said they will fix it. I just hope we don't have to wait another 6 months.)
I am dreading Purim this year. It falls the same way it did last year. So we get to relive everything all over again.
This is quite long and I had hoped to be in bed by 12. Once again, if you are in the area, please feel free to come Sat. night to the boys yeshiva at 9 pm. Email me if you need directions or more information.
Last night marked the fourth year since Yossi's passing. This year was so very hard for me since it fell out exactly as it did four years ago. Purim falling on a Friday is not a common occurance. There are things that are done differently. I think that it happens like this again in 2008 and then not for many years. So this year was hard because the time line was the same. Thursday night I remembered how one of the nurses was really pushing us to turn off the medication and let Yossi die that night. (I still had a deep faith that he would make a complete turn around on Purim.) And although I don't remember the kind man who came and read megillah for us Friday morning (I think he was the president of one of the synagogues in MN), I do remember that it was the best I have ever heard. I remember the shock we got Friday night when the nurse thought that Yossi was brain dead, and how within an hour the whole situation seemed to have totally turned around. (I am not sure I wrote about it at the time. She had thought he was brain dead, and called the doctor. They thought this because his pupils were so dilated. Michoel asked if this was because of the eye exam he had. It turned out that Yossi's nurse earlier in the day had forgotten to write down that he got his pupils dilated. So it turned out that the whole situation was a false alarm. I was encouraged because I felt that this was like a sign. You know, if the sword is at your neck, you should still pray for salvation? I thought that this was it. The turn around was coming. Instead, we all know that how Yossi's story ended. :-(
The siyum that the boys did was very nice. Menachem spoke very well. Rabbi Bart was next to speak, and then On Topaz. As On was talking it dawned on me that these two men were the very ones we called that awful Sat. night to get their opinions on turning off Yossi's medication. We all know that there is no such thing as a coincedence. It was divine providence that I had picked these two to speak. I spoke shortly, and then everyone went out for refreshments. I was very happy to see that every child who was in Yossi's class (at the time of his death) was there. Some of the kids have left the RTA schools, and yet they still came. I don't think they know how much it meant to me. I think that Yossi was so blessed to have such wonderful friends. Most people are lucky if they have one or two good friends. I think he had 4 or 5 really good friends. Best friend type friends. I used to think how lucky Yossi was that he had friends since he was a baby almost. Yossi and Yonatan were friends since we moved down here. I have good friends since high school, but none of the friends I knew since elementary school. Yossi was so lucky. And in a way, he still is. His friends love him and admire him. I know that they will take Yossi with them where ever they go. I know he will be with them and watching them from above.
Please stay strong and continue to do good deeds. One final thing, sort of related and sort of not. This week Terri Shiavo has been in the news. I guess for me it was such bad timing. It has caused me so much pain to read and see what is happening with her. I won't go into all my feelings here. Let me just say that when Yossi was lying there in a vegetative state, I said in no uncertain terms that I would have been very happy to take him home and care for him for the rest of my life like that. As I said when he was alive, where there is life there is hope. There is no hope for him now. I don't understand how anyone can think it is humane to starve another human being to death. My prayers and sympathy go out to this family. I know the horrible world they are about to enter. I hope they will find some peaceful memories of their daughter as time goes by.
Finally, Teaneck, NJ was hit by a horrible tragedy this week where a family lost four children. I guess all of this combined has just made for a horrible week for me. I can't wait to get through the next six weeks and get past Yossi's birthday. BTW, just for those of you who like numbers, Michoel mentioned to me recently that Yossi is now dead longer than he was sick.
Yossi was such a good, sweet baby. He used to follow my schedule of staying up late at night and sleeping late in the morning. I remember holding him on my lap in bed as I was waking up, talking to my friend Ora. (This was before the days of call waiting ... poor Michoel ... he would get a busy signal for such a long time!) Some time after Yossi was born I arranged a "hakel" meeting with some friends. (Hakel is the gathering that used to take place in Jerusalem.) We all had little babies. These meetings grew from me and two other friends into a group of 10 or 12 women. We would learn together, talk about being moms, and let our babies play. We met at each other's houses, and sometimes we went to the park. This one meeting turned into a weekly gathering that was super for all of us. I have a framed picture of that first meeting. The three babies are laying side by side. (Maybe I will try and get this up today.)
When Yossi was 11 months old, we could not take living in NY any more. My father in law drove up with a rental truck. We loaded everything on it, drove down here, and put everything in storage. This was supposed to be a stop over while we figured out where we want to live. (We still haven't figured that out, BTW.) Yossi had his first birthday here in VA with me and Michoel. Soon after that I meet Joan. Yossi met Yonatan, and the rest is history. The boys were friends since they were less than two years old.
Yossi's second birthday was a small affair with just Yonatan and Elana coming. It was hilarious! Yossi got the famous Little tykes car. He was so possessive of it. Every time Yonatan or Elana went near it, he would run over and make them get away. (Sadly, the car last longer than Yossi. The kids still play on it.) Of course, Yossi's third birthday was a very big affair. Yossi got his first hair cut. And then for his fourth birthday he had a party togther with Avrummie (who was born a half day after Yossi). They had a fireman party. We had the fire department come out with their truck and show it to the kids. It was a great party. Then there was a minature golf party, and one year he had a football party. We skipped Yossi's 9th birthday. When he got sick, we made him an half-birthday party. It was a sleepover with his friends. He was so happy to have an 11 year old party. Sadly, for his 12th birthday I didn't make a party. I said to him, "You are going to have a very big party next year." We had a quiet celebration in our house. And we all know the rest of the story.
I love you and miss you so much.
The kids wanted to watch a movie, so I decided that in order to make sure that there were no fights, I would pick the movie. One of my all time favorites movies is Fly Away Home. I think that it is such a sweet and wholesome movie. Anyway, we started to watch it, and I got very down and depressed. When Yossi was first sick, he and I were going to watch this movie. There was a little named Gracie who was 15. She was a petite little thing who had cystic fibrosis. She had family problems and was in foster care at the time. I invited to come in watch the movie with us. Every time I see this movie, I remember this night. We had such a nice time, the three of us. Sadly, I am the one left who has this memory. Gracie succumbed to her disease some time ago. It makes me so sad that I live in a world where kids die, you know? I so much want to go back to the innocent me 8 years ago where I didn't even know a kid who was seriously ill, let alone with a fatal disease.
Anyone who knows Yossi knows what a big Harry Potter fan he was. I know he would have been so excited to get this latest book. The week before the book I was at the library. One of the librarians, Lisa, came up to me. She said to me, "With all the hoopla surrounding the upcoming book I just wanted you to know that it made me think of your son a lot." That sure did make my day. Thank you Lisa. Not only for remembering him, but taking the time to let me know you still do think of him.
I was talking with Yonatan yesterday about several things. One of the things I asked him was what he was reading lately. I was glad to hear that he was still into Harry Potter as well. It makes me very sad to think that Yossi might have out grown it. But I guess not. When Harry Potter #4 came out, Yossi grabbed the book first, and read it non stop. I wish I had someone else in the house who had that enthusiasm for it as well. SIGH It is things like that that make me miss him a ton. Shauly took the second copy I bought, but he didn't have that burning desire to finish it the way Yoss did. I miss being able to talk to Yossi about it as well.
One of the other things I spoke with Yonatan about was how the books are doing in the library. He told me that boys were reading them. I am so happy to hear that. I have been stocking the library with classics, and I was worried that the boys might not like them. I am thrilled to hear that they are really enjoying the books and making good use of them. It means a lot to me.
I have really been struggling with davening (prayers) lately. I told my rabbi that G-d doesn't listen to me; He just does what he wants to. I mean, how many times can someone keep asking for things, and keep getting told no? I know He has a plan and it is best for me. But what is the point of davening if I feel no one is listening? I keep asking for one thing -- Bring Moshiach. But the world is just so crazy. It is so upside down. I see so many Yidden (Jews) who have strayed so far. So many who are lost or have lost their faith. Even within my own family to watch the breakdown has been heart-wrenching for me. How am I supposed to do this alone? How much can G-d put on one person's shoulders?
I want to feel connected to Yossi. As time goes by, I feel the connection I had slipping farther and farther away. Shauly is the age that Yossi was when he relapsed. I don't want anything to happen to Shauly, but it hurts to see him surpassing Yossi. Soon he will have lived longer than Yossi did. This whole situation is so unfair from this side of it.
The fall yom tovim were VERY hard for me this year. I went to shul for the first time on Rosh Hashana. I did cry during part of the service. But it also made me miss my "roots" very much. I am Lubavitch, and this shul I go to is more modern Orthodox. So for Yom Kippur I went to Lubavitch. It was incredibly hard. The last time I went for Yom Kippur was the fall of 2000 when Yossi was begging for his life. I cried a LOT during the prayers. Just before ne'elah (closing prayers), Rabbi K. said some words about how our prayers are always heard. At first thought, I took it to mean answered. But then it really dawned on me. G-d can hear our prayers, but know that the answer is "no". When I was packing to leave for Lubavitch, Shoshana was begging me to go. She had no idea where I was going, but she knew I was leaving for the night with Shauly, Chanie, and Sruli. She cried and cried and it really broke my heart not to take her with me. But I knew I could not handle her with the other three kids while fasting (and I am expecting, IY'H, blee ayin hora). It suddenly hit me that maybe, just maybe, Hashem is sitting there crying with us. He wants to give us what we want, but He knows He can't. Yossi and all of us davened so hard that he should live. And we know that it was not destined to be. Maybe G-d is crying with us now too?
This year has been a hard year in another way as well. I knew that this was going to happen. Shauly is now 12, in seventh grade, and getting ready for his bar mitzvah. It is almost like reliving it, but in a different way. My in-laws, myself, and Michoel all have different ideas on what Shauly's bar mitzvah should be like. Meanwhile, each day brings it one day closer and we are no closer to figuring out what we want to do. I know for me it will be a horribly hard day. In one way, I totally dread it. It doesn't seem right to do it, in a way. How can Shauly have a bar mitzvah when Yossi never got his? But on the hand, how can I deny him one? Anyway, that is the struggle we are currently facing.
Yossi's fifth yartzeit is coming up in March. We are going to do the dedication. It will be the last year his friends are all here. I am supposed to be making parachos (curtains for the holy ark), but I have such a block over what design I want to use. It is sitting very heavily on me. I am due two weeks before, and at one point I was thinking we could possibly end up with a bris and a yartzeit on the same day. But then I realized that my doctor wonï¿½t let me go that long, so I am not as worried. I am more worried about getting those paroches finished, as well as figuring out who is going to cook for the siyum!
All right, that wraps it up for now. Thanks for reading all this!
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