CLICK TO READ THE MAY 2001 UPDATES:
May 2, 2001 May 4, 2001 May 9, 2001
May 10, 2001 May 14, 2001 May 16, 2001
May 21, 2001 May 23, 2001 May 30, 2001


May 2, 2001

I can't believe it, but we got a sort of positive reply from one of the literary agents that Michoel wrote to a while back. He wanted to know if we started the book. So, I started writing our book. It's a lot harder than I thought. First of all, I have to revisit some very painful memories. When Yossi was first diagnosed, I thought the world had ended. But the more I went through it, I had HOPE! Even when Yossi relapsed, I had hope. Up until the night he died, I still had that hope. Now I am looking back at it, and I know the end of the story, and it's so sad. I feel that a book about Yossi (A"H) would help any families who are going through it to use the internet as a resource. Also, it will give other families strength and hope.
When Yossi got that new medicine, it was a breakthrough for children with aspergillius. At that time, there was a 9 year old(?) girl down in Atlanta who had that infection, and a teen age boy who also had it. Both times I got requests on how did we get it. Well, the little girl, Bethany is doing well after the doctors almost gave up on her. The boy two weeks ago was given 24 hours. The family stopped all of his medicine except the one medicine. He recovered, and this past weekend he got out of the hospital for a couple of hours on a pass. While I am extremely happy for those families, I am more sad for us. I KNOW that everything that happened was what G-d had wanted to happen. BUT ... what if those infectious disease doctors had told me about the medicine a week ealier? Would it have helped Yossi? Or did G-d make me a messenger for those other families to find out about it? Who knows. I like to have control over everything, and this feels so helpless, the not knowing.
The kids are all doing OK. Chanie has been vocal about missing Yossi. Shauly watched a movie that Yossi saw with Ari back at Chanukah. Shauly ran and got the sweatshirt jacket of Yossi's I gave him. He told me that Yossi was watching the movie with them. And poor Sruli is so confused. First I told him that Yossi is with HaShem. Then we go to the cemetary, and I tell him we are going to "see" Yossi. When we left, he kept saying, "Where is Yossi?" I finally told him that he is with HaShem AND in the cemetary. I think that when he gets older, he will finally realize what I was talking about all this time.
I want to share a special memory that is of Yossi. When I got pregnant way back in '87, the home pregnancy tests were new and very unreliable. So I went to a doctor and had blood taken. We had been just married for about 2 months, and were living in a bugalow colony in the Catskills. The office told us to call back in 2 days for the results. We were driving down to the city when it was time to call, so we pulled off the street at a payphone. Now anyone who knows Brooklyn will know that Atlantic Blvd. is a terribly busy street. Michoel called, and the woman told him the test was postive. He got confused, thinking it was positively NO. So he asked her what that meant. When he finally understood we were expecting, he hung up the phone. We just stood there and for a few minutes, the whole world seemed to disappear, and it was just us two and our new life. It was such an amazing thing, like in a movie or something. It was the one and only time I felt that way. Another Yossi fact ... I felt him move when he was 14 weeks along ... I can't tell you any of my other kids, but Yossi, him I remember. I guess it's true about the first. I can tell you when he began to walk (in my in-laws house), and the first time he turned over (at my mom's house). And another story ... (I love to talk about Yoss!) When Yossi went in for his first transplant, I found out I was pregnant with Sruli the week he went in. It seemed like terrible timing at the time. I knew that I wouldn't be able to keep it a secret from Yossi for long. Usually we tell the kids around the 4th or 5th month, right before I start to show. Well, I don't remember how far along I was, but I remember telling him that I was pregnant. Yossi burst out crying. I was scared, as I thought maybe Yossi thought we were trying to replace him or something. I asked him anxiously, "What's wrong? Why are you sad?" He told me, "I am not sad. I am crying because I am so happy!" One more Yossi story before I go ... When I was going to have Sruli, I had been having contractions for days. The morning I went to the hospital, Michoel took the kids to his parents house. Yossi was so excited, he ran across the street to the Rabbi Ron's house. When Sharon, his wife answered the door, Yossi proudly told her, "My mommy went to the hospital to be seduced." He didn't understand why we thought that this was hilarious! Yossi, Mommy loves you!!!!


May 4, 2001

Last night I had a chance to watch the video of Yonaton's bar mitzvah. It was video taped by his aunt's mother in law, so the focus obviously wasn't Yossi (A"H). But it was nice to see him again, in a video I haven't seen. Yossi had such a great time. You would never have guessed that he was going away for a few months, and this was the last time he would see his friends until he was supposed to have returned. Yossi danced and danced and danced. It was like he didn't have a care in the world! I commented to Michoel about it this morning, and he said, "Yeah, Yossi had a great attitude. Except when it came to the teacher at the hospital. Then he would get real cold." (He quoted Yossi here-)

TEACHER: "Do you know what chapter you are on?"
YOSSI: "No."
TEACHER: "Well, do you think you could look through the book and find where you are? "
YOSSI: "No."

Yossi didn't like the teacher from the hospital. He thought she was old, mean, and ugly. (He didn't actually give her a chance. He said that after he met her the first time.) Michoel and I had a good laugh remembering this.
That is one thing I will always feel bad about. When Yossi relapsed, I pushed him to keep up in school. At first I thought it really doesn't matter in the long run. But then I figured I wanted him to feel like a normal kid. When the first grading period came out, I asked all the teachers to give him a grade he really deserves. Most of his grades that time were incompletes. He was really upset and I told him that he wasn't going to sail through it, he really had to do the work. I told him that he wasn't going to automatically skip to the next grade. He gave it a lot of thought, and in one weekend, he caught up on his math and I also think he didn't most of his civics work too. He worked really hard. (It was Thanksgiving, so he had a long weekend to do all the work.) In the hospital, I also pushed him to do his work. In the videos I took of him, he is working on math or civics. (Going through his stuff I see how much he really liked math ... he saved every notebook and test, whereas for lanuage arts, he has only a couple of rough drafts and no final copies of anything.)
The whole in my heart is still very big. One thing that does give me joy is speaking about Yoss, and telling stories about him. The only thing I can't remember, and neither does Michoel or Marvin is how Yossi got the nickname YossMan. Wish I could remember that, or at least ask him.
Back to the bar mitzvah tape ... I haven't been to a lot of bar mitzvahs, and certainly not to the end of one. This one at towards the end turned sort of into a "kum zitz" (literally- come and sit) where the boys were sitting on the stage and singing with the musician. It was really nice, as the fisrt song they all sang was "achainu kol bais Yisroel". Then there was a lot more dancing. After that, all the boys got up on stage, and they had their arms linked around each other, and they sang more songs. The last song the boys sang they were all back on the ground, and they were dancing to "L'shana habah b'Yerushalim" (Next year in Jerusalem). Then the boys were standing there screaming it, and finally, after the music stopped, they continued and continued to the point where the music started back up. Then they made a chain, and ran around the room. It was soooooo unbelievable to see how happy Yossi was. (Thank you Joan for getting the video for me!) I truly hope Moshiach does come so we can have Yossi back.
Please continue to say psalm #14 for the neshama of Yosef Chaim ben Michoel Dovid HaLevi. Also, I forgot to mention that the high school has almost $7000 in Yossi's memory. Thank you to everyone who has helped. If you haven't, you can always go to the schools website (link below), and either send off a check, or you can call with a charge card. Don't forget it's tax deductable too!


May 9, 2001

Super duper big sigh now. Here is what our site should have read:

May 9, 2001
Day +100
WE ARE GOING HOME TOMORROW!

Instead, here it is, Day + 60 that Yossi isn't here physically with us ... another deep sigh. Michoel told me yesterday that I shouldn't focus on what should have been. When Yossi's kidneys failed, we realized that we would probably be there for a very long time. We started thinking, "Oiy, we are going to be here for months and months." We were looking at how weak his arms and legs were, and thinking about how long it would take him to regain strength in them. I was concerned with how our other kids were going to manage and all kinds of other problems. Never did I think we were going to come home the way we did. Even towards the end, when Avraham Fried came to visit Yoss, he was still thinking ahead to the summer, and going back to Camp Simcha. He was always filled with so much hope, and a total love of life. He never really saw the bad in things. When Yossi was much younger, there was a child in his class that I thought was a bad influence since he had bad middos (character traits). I told Yossi not to play with him too much. Yossi asked me why, and I explained my reasoning to him. He was so pure and kindhearted, He came to me a few days later, and tried to show me how I was wrong. He always felt that this child was a nice child.
When Yossi was in either 2nd or 3rd grade, he got a letter from Tzivos Hashem. (It's an organization dedicated to children. There is a link to their site on Yossi's links page.) Some how, Yossi had gotten from onto the "shnorrah" list (literally, it means beggar-- but it means that he got a letter asking for money). I usually just dump letters like that addressed to a kid, but my kids always complain that they don't get mail, so I gave it to him. Yossi took the letter into his room, and a little while he came out with the letter and some money. He felt terrible that there was some kid in Israel suffering. He wanted to send them some money, and felt bad that he didn't have a lot. When Yossi was first diagnosed, we had a charity box in our room at the hospital, and asked people then to give money. He also had me send that to Tzivos Hashem. When Yossi was sick this last time, that was the same charity box we took with us. In fact, between that on and the one for Chai Lifeline, Yossi raised over $200!
This past summer, the week before school started, Yossi was at home. One of the teachers needed some help moving furniture, or something like that. I called Yossi, and he gathered a few friends to come help. He stayed there all afternoon, proud that he had grown-up. See, he and his friends were the rising 7th graders. They had seen the older kids do this. Now they were the older kids.
The summer of '96, Yossi went to camp here. Rabbi Sherman runs a boys camp. Yossi was thrilled to go. He learned some trup (the sing-song way the men read from the Torah), and played sports, etc. He had such a super time. I think they also learned how to make Tzitzis. He learned how to swim, and was very proud of that skill.
When Yossi was much younger, we went to Kings Dominion (an amusement park). He didn't like the roller-coasters. Over the years, I have taken him to various parks, and slowly but surely, he began to love them. When he went down to Disney, he was ecstatic when Dr. Grossman gave the ok for him to go on them. One of the best pictures I have of him and me is on the little roller-coaster in Mall of America. We knew where the camera was, and agreed to make a silly face for the camera rather than scream. Right before Yoss relapsed, we got to go to Busch Gardens with the Leukemia Society. Yossi took Chanie on a roller-coaster called "The Big Bad Wolf". Chanie was terrified. I didn't realize when they went on it, that it was that scary. But she met the height requirement, so I let her go. She has a happy memory, because Yossi was on it with her. (He loved it, she was scared.) Mary Campell was kind enough to send me a couple of pictures that were taken on that day. Thank you again Mary for inviting our family. It was such a super day with loads of happy memories.


I don't know where Chanie was, so don't ask.

So, 61 days ago, I was preparing myself to lose my son. But, there was really nothing I could have done to prepare for this. Before, he left, I was full of love. So much so, I felt my heart would burst with pride and joy at my kids. Now that same heart is ripped open, with a wound that will never heal. I don't think that there will ever fully be joy in my life the way it was before. There will always be a hole there. And what is most ironic is that I think that this is how we Jews are supposed to feel about our Holy Temple, the Bais Hamikdash. And yet, do any of us truly feel that way about it? I personally did not. Now I feel I understand things with a much more mature attitude. I look at life so much differently. I feel that I have learned what is truly important. I know I have said it before, but I don't want another family to have to learn what I have learned, the way I did. Love your children, your family, your friends. Be thankful for what you have. Life isn't perfect, but it could always be worse. And remember how much Yossi loved life, and live it to the fullest, for him.
Please remember to say his tehillim, #14 for him, Iluey nishmas, Yosef Chaim ben Briendle Leah. Please also give a little charity each and every day, also asking HaShem to credit Yossi with it. Yossi is no longer able to perform good deeds, and he is relying on us to do it for him. One final thing ... The last month of Yossi's life, his body no long functioned properly. We have a blessing that is said each and every time we use the bathroom (thanking G-d that our bodies work correctly). When you say this bracha, Asher Yatzar, please stop for 20 seconds, and concentrate when you say it. Think of Yoss, and remember him! Don't ever forget by bachor (first born).


May 10, 2001

Today was an interesting day. I starting packing away some of Yossi’s (A”H) clothes yesterday. Today, I was working in his closet. It was very hard to put away shorts that it seems like he had just worn. One pair of shorts was making noise as I was folding it, and I realized that there was a paper in the pocket. I got excited, thinking that maybe it was a note Yossi had written. I opened it with apprehension. But no, it was a note I had written to his teachers giving him permission to use the bathroom as needed, and sit out during gym. The date? Oct 4, 2000. Those were the shorts Yossi was wearing the day he relapsed! A major downer for me, to say the least.
Today I had a little luck getting the baby to watch a completely different video than what he has been watching. (Lately it’s been several different ones, but for a couple of days, he would watch his Dragon Tale video over and over and over. Now while the middos are excellent, it does get very tiresome for me to hear it in the background so much. [Please don’t think my baby watches so much TV. He uses it for background while he is playing also.]) So anyway, I get him to agree to watch Cool Runnings. This was one of the movies Yossi watched over and over and over during his first transplant. He did watch it once during his time in MN. So he is watching the movie, and I suddenly struck by this thought. Yossi’s struggle is this movie. Now, if you have never seen this movie, and think you want to, don’t continue reading, because I am going to ruin it for you. This movie is about the Jamaican bobsled team. That’s right, Jamaica had a bobsled team enter the Olympics in 1988 (the year the YossMan was born!). They worked very hard and had to face the ridicule of the other teams competing. But they didn’t give up. They kept working and had a goal, to win a medal. On the way down the course, they slipped and the bobsled eventually came to a complete stop. Those men picked the bobsled up, and walked the remainder of the course until they carried the sled across the finish line. They didn’t win, but they showed incredible dignity. They returned to Jamaica true heroes. This is Yossi. Although he didn’t win his “race” with cancer, he did live his whole life with dignity. There was a nurse there that we really liked, and her name was Kendi. She was from Nigeria, I think. Kendi once commented to me how polite Yossi was. (She was one of the few who got to know Yossi while he was still conscious.) When it became apparent to us that Yossi wasn’t going to be here much longer, I let some of the nurses who had worked with Yossi know so they could come in and say, “Good bye”. Kendi was one of them who did. It was the Shabbos a week before he actually passed away. I had fallen asleep on the bed in the room. I woke up, and realized that someone was near Yossi. Kendi had come in, and was quietly speaking to him. As she turned to leave, I saw she was crying. Since she saw that I was up, she came over and spoke to me. She again told me how nice and polite Yossi was to her. Kendi told me, “When the kids get up here, they are very sick. Usually, they have lost all their manners. Yossi was special. He was always polite and respectful to me.”
So all afternoon, I am feeling sort of blue. Not terribly down. Tonight is Lag B’Omer, a minor holiday. Usually people gather and have a bon fire and maybe a BBQ. (One thing about Jews is that we love to eat.) So I decided to follow the advice given to me yesterday that I need to get out of the house. So I took all the kids. I felt so awkward, like everyone was starring. I felt like people were thinking what a loser I was to have a child die. I am sure people didn’t actually think that, but I feel like such a rachmanus (pity case). Everyone was so nice to me. A lot of parents of kids that I taught this year told me how nice it was to see me. I know they mean it. It’s just so hard. You know, it’s like the book, the Scarlet Letter! That is what I feel like. I have been branded for life with this! I know it’s not my fault, but part of the American mentality is that if you work hard enough, you can achieve anything. Well, I worked so hard to try and save him, but it wasn’t in G-d’s plan. I can realize that with my head, but in my heart, that is another story. I did manage to have an enjoyable time. The hardest part was when I looked over, and saw Ari, Guy, Avrummie, and Abraham all sitting on the hammock together. I knew that if Yossi had been with me, he would have been sitting there too. Tonight as I was reflecting on the moment, I had an inspiration. Just as it is so terribly hard for me to see the boys, it must be equally hard for THEM to see ME! I must be a reminder to THEM that they are missing their friend. It did make me think a moment. I do feel so bad for everyone. The best part of the night was the ride home. I had the kids tell me their favorite Yossi moments. I think it’s good for them to remember him and to verbalize it. Shauly’s was the funniest. He wanted to play with Yossi, but Yossi didn’t want to play with him. Shauly went out of his room, but on his way out, he locked the door. After he was outside of the door, he stood there and sniffed. Now Shauly never blows his nose, he just sniffles. It used to drive Yossi bonkers. So Yossi comes running out of his room, but he can’t get out because the door is locked! We all burst out laughing, because we could all picture this! Good night!


May 14, 2001

Friday started out as an OK day, and ended up very depressing. I took Guy, a friend of Yossi’s (A”H) with me to the cemetery. Guy was having his bar mitzvah this past Shabbos, and I thought he would enjoy the time with Yoss. Well, we both had a very pleasant time. As we were driving to meet his mom, we started talking about Yossi’s last days. Guy had been very hopeful (as were all of Yossi’s friends). He had sent Yossi some very beautiful emails. In one of the final ones he sent, he had asked me to “just believe”. I felt very bad about it, and I wanted Guy to understand that it was truly out of our hands. Guy had told me how his father (Dr. On Topaz) explained to him how very sick Yossi was, and how he didn’t think he would recover. I told Guy how towards the end of Yossi’s life, we had noticed his legs had atrophied. At that point we knew that we were going to be in Minnesota for a very long time. We realized that it was going to take a lot of physical therapy for Yossi to completely recover from his lack of moving his legs. Even when they had PT and OT coming, it wasn’t going to be enough. As I was describing this to Guy (as gently as I could), I started crying and crying. Let me tell you how hard it is to drive and picture your son with legs so skinny they looked like the legs of holocaust survivors! It’s a miracle I didn’t have an accident! I felt like I gave Guy the message I wanted to give him, telling him about the end, but how we were still full of hope. I did feel bad leaving him on a down note.
Guy shared some stories with me about Yossi. One of the ones I liked the best was about when Guy slept over. After Michoel and I had gone to bed, Yossi and Guy went into the family room. I knew they did things like that, because I have caught Yossi doing it before. Well, Guy told me that Yossi did things he wasn’t supposed to, like stand on the coffee table. I thought that was a hoot. Yossi wasn’t an angel, but he was such a normal kid! I love it.
Yesterday I took the kids strawberry picking. I try to do this every year. The first few years we lived here, I would forget until mid-June, and our strawberry season is over. I have managed to take them for a lot of years. Last year I just made it! I went to the same patch we went last year, and it was very bittersweet. I remember Yossi and could picture him there with us. Yossi loved to go berry picking, but he didn’t like strawberries! Last year he got bored and took the baby to the play area. That is one of the reasons I like this patch, it’s very small. A couple of years ago we went to a real large one, and Shauly got lost. Well, in all the years of picking berries, I don’t think we ever picked as much as we did yesterday. These berries were the best I have ever had. (The flyer said they peak around Mother’s day, and boy were they right!) We also got the camcorder back, so I was able to watch some more videos of Yossi.
Someone suggested to me that I need to keep busy in order not to think about Yossi so much, but it’s impossible not to think about him. Yesterday as I was driving, or picking or even at night when I wash dishes, anything, I think of him. I think of him when I drive, or when I meet someone knew. Today a woman was asking me if I have 4 kids. I told her, “No, I have 5.” She was looking, and saying, 2 boys and 2 girls. I almost slipped and said, “I left the oldest at home”. Then I remembered that Yossi wasn’t at OUR home. (I used to leave him home when I had to run errands because he was old enough to be left alone.) I guess I wouldn’t be lying if I said that he was at home. Thankfully she didn’t ask the next question everyone asks, “How old are they”. I probably would have left the store in tears.
One final Yossi memory. Yossi was totally enthralled with firemen and policemen when he was younger. Yossi had a whole collection of police badges he would wear. He once told me that he wanted to be a policeman when he grew up, but I told him that I didn’t want him to. I was too scared he would get hurt. Yossi had a friend he met through my mother-in-law, Officer Tommy. When I was going through Yossi’s stuff, I found a picture of Officer Tommy that had appeared in the newspaper a couple of years ago. Yossi still remembered him. I guess he still had a thing for policemen after all those years. Yossi also used to dress up as a fireman. He had helmets, and he would wear my jacket, and run around putting out fires. One of the best museums he ever went to was the fire museum in Phoenix. He was in seventh heaven there. (He must have been barely three, because he had a head full of curls.) For their fourth birthday, Yossi and Avrummie had a fire truck actually come to the house, and give a demonstration. It was a really special birthday. (That was the video I watched yesterday.) Good night.


May 16, 2001

First, some very exciting news for me … I was asked to represent our chapter of the Leukemia and Lymphoma Society at the congress lobby day next month. Me! I am going to Washington to meet with congressmen and tell them Yossi’s story. They want me to bring a picture of him, and I can also bring my business cards that Judy made me. (They have a picture of him as well as his website. These cards have a plea for donations to the high school, but I am going to change it to a very condensed version of his story.) I feel like I am doing something constructive. I want to get more money for research. It’s time to end the suffering of families. I got my Mommy Boots, and I am ready to STOMP on Washington. (The most ironic part of this whole thing is that I am probably going to meet with Congressman Cantor. He is the uncle to Yossi’s best friend, Yonaton. I had been trying to set up a meeting with him before Yossi’s treatment failed. Now it’s all falling into place. Cool, huh?)
Now, a friend of mine told me something that she thought would make me sad, but it really hasn’t. It has actually made me sort of happy, in a weird way. She has a friend whose child has an illness. Her child’s illness is adversely affecting the whole family. The friend told my friend when Yossi passed away she was jealous. She was saying, look how great he was, what a good boy he was, etc. I thought about it. She is right. One of the things that we learn between Passover and Shavuos (our next holiday coming up next week) is Ethic of Our Father, Perkei Avos. In the fourth chapter, 17th misneh (section) it says, “Rabbi Shimon said: There are three crowns – the crown of Torah, the crown of the priesthood, and the crown of kingship; but the crown of a good name surpasses them all.” One of the commentaries mention that the crown of a good name adorns someone whose good deeds and behavior earn him the respect and affection of his fellows. Even scholars, priests (Kohanim), and kings are lacking if they fail to earn this crown. (I copied this verbatim out of the Artscroll Mesorah series without their permission.) This describes Yossi! I got so excited when I realized this. Guy had told me, Yossi was the only kid in the class who he can’t remember ever being mad at. He said Yossi was always nice and kind. Yossi truly earned the crown of a good name, keser sham tov. Why am I mentioning it? Well, as his legacy, we can all strive to do the same thing. Yossi wore his mentchlekiet naturally. He had such a good and giving heart. He always greeted EVERYONE and everything b’shanim panim yafos (with a cheerful face). In the time when we are supposed to look into our hearts, and strive to be a better person, what better memorial can we do for than to learn from him? I know that I have used his memory in my dealings with others. I have been trying not to get upset, and to speak kindly when dealing with others. I feel that this is a true honor we can show him.
When Yossi was in first grade, he learned about the custom to stay up all night before the holiday of Shavuos and learn Torah. Yossi wanted to do it. He stayed up until very late (I don’t remember the exact hour). I know he learned what he could. He sat and ate the chocolate torte I made. (I still have the recipe, and I think of it as the Shavuos cake for Yossi. I will share it with who ever wants it.)
Chai Lifeline had a memorial service for the YossMan. One of the boys who spoke was a very good friend of Yossi’s, Matis. Matis is himself a cancer survivor, and someone Yossi really looked up to. Matis mentioned how Yossi greeted one of the campers everyday. This was the camper who was in a wheelchair who not too many people wanted to be near. On the day Matis heard that Yossi passed away, he saw this camper at a Chai Lifeline function. Matis went over to him and wished him a Happy Purim. Matis mentioned that his face lit up. By emulating the good Yossi did, we will keep him alive. Thanks Matis!


May 21, 2001

Well, it has been a long time since I (Papa) have written an update. Actually, I would not call these entries updates anymore. What is there to update? Nothing is going to change, Yossi is gone and he won’t be coming back. Really, that says it all. I feel that I/we let Yossi down and at the same time I feel deserted and abandoned. It is hard to explain. I am not blaming Yossi for leaving us, even if it is true that he is in a much better place…Even so, it is hard to believe that Yossi would choose that over being with us. Who knows? No matter what you believe no one knows what happens after you pass away, and even that little bit of uncertainty is driving me crazy. How is Yossi? What is he doing? Is he aware of his family down here? Is he happy? Is he sad that he is not with us anymore or that we are sad? Does he still remember us? Or is he simply in his grave, his body rotting away?

Life now is really too hard. I guess the distractions of other kids, work, household things keeps me going, but it is not a very good existence. The other kids are getting the short end of the stick from their parents. We try, but the grief and sadness are usually too overwhelming to put it aside for even a few minutes. I do have to say that not having the worry and uncertainty hanging over my head is somewhat of a relief. What I mean is that before Yossi passed away there was a constant worry about medicines, test results, procedures, etc. All that is gone and it is nice in a way, but also it leaves a very big hole. Of course, I would take that all back if it meant Yossi was still alive and had a chance of surviving. But, what did we put him through 3 ½ years of pain, suffering, and torture for if this is what happened? If I would have known the outcome, we never would have subjected him to all that. Of course, nobody knows the outcome, so life remains one difficult test after another.

Our religion states that if you commit suicide you will not merit the world to come, which means that you will not be in the “good place” where Yossi surely is now. But, it also teaches that you can repent even one second before your death and then attain the reward. So, I have been trying to come up with a scenario where I can hasten my reunion with Yossi. I guess chances are that it won’t work. However, the way I look at it, I KNOW for sure I won’t see Yossi here in this earthly existence…so what is there to really lose? These are just some of the thoughts that go through my dulled mind. I am grasping at straws.

This past Friday I went to the cemetery by myself. That was the first time I made a solo trip. I was all alone there and it was very hard. I talked and talked and cried and cried and felt pretty foolish. Even though there wasn’t anyone to be seen, I kept looking around to make sure I wasn’t making too big of a fool of myself. I tried telling Yossi about what was going on with us now and fill him in. At one point a couple of bees started attacking me and it made me jump out of the way. I know that Yossi was laughing at me at that point. He had this funny sense of humor and would always tease me if something went wrong. Of course, he was never serious, but it was funny. I miss that so much. I just wish I knew for SURE that Yossi heard me and was really there in some sense. I am a skeptic and I really need absolute proof before I believe something. A case in point: I asked Yossi to come to me in a dream on his birthday. Of course he wasn’t conscious when I asked him this, but I felt that he could hear me and understand. A short while before his birthday I had a very vivid dream about him (basically the only one). He was happy and healthy and telling me that he was fine. He was wearing the same shirt that he somehow managed to wear in almost every picture and video taken when he was in camp last summer. I was hugging him and crying…suddenly I woke up and as is my habit I immediately looked over at my clock. Well, the time was 4:14 am. His birthday is April 14...4/14. Does this mean something? Is this the sign I asked for? I want to believe it, but I am just not sure. A good friend of mine, Eric, said that we don’t know what the rules are up there, maybe you can’t just come to someone in a dream or provide a sign whenever you want. Maybe this was the best Yossi was allowed to do. That explanation from Eric made me feel better and a little more confident.

Well, I have written enough and it is too jumbled for me to go on.

I love you Yossi!


May 23, 2001

I know for a fact that this is going to turn into a long “update” on my life without the Yossman. There is a lot I want to say, so please bear with me! (I am sitting and writing this very late Tuesday night. I dated it for Wednesday, because by the time I was finished writing, it was after midnight. So that is your time-frame as you are reading.)
First of all, I went to my class’s siddur party yesterday. (In our school when the children finish learning how to read the alef-bet [Hebrew alphabet] they culminate it by having a party. The children are presented with their very own prayer book. They parents were asked to decorate the cover. After they receive the siddur, they say a condensed version of the evening prayers. Usually the siddur party is in January when they finish learning all the rules of reading, but this year I was obviously pushed off.) It was very hard for me to walk into the school. I felt so out of place. It wasn’t anyone, it was from within me. I tried to sneak in to the gym, but several kids noticed me, and got real excited. And those were the siblings of the kids I taught. I realized that I needed to go upstairs and say “Hi” before the kids come down. (If I didn’t, they would have gone bezerk.) So I get upstairs, and all the kids start jumping up and down and screaming Hi to me. They were so excited to see me that it made me feel like it was worth it. When they began the program, the first song they sang was Yerushalim Shel Zahav (Jerusalem of Gold). It’s a song that was written about Jerusalem back in ’67. (It was written a few weeks before we actually got it back. They added two more verses after that happened.) I had to leave the room since that is the tune to “Yossi’s song”. Each of my kids has a song I used to sing to them when they were little. I will put the words to Yossi’s song up, as I have been meaning to do it for a while, and this is a perfect time. My friend Shaindy Jacobson wrote this song so many years ago for a production our seminary did. I loved this song, and when Yossi was little and couldn’t fall asleep, I used to sing it to him. (This song tells that when knowledge is spread to all the corners of the Earth, Moshiach will come.)

When all the children of the Nation,
Will join Tzivos HaShem…
To Yerushalim with Moshiach,
We will go with them.

The walls of the Bais Hamikdash
Will be alive once more.
Rachel Emainu and the avos
Will greet us by the door.

(chorus- 2x) Aim mosai koaseemar,
When the well-springs will reach so far.
The ge’ulah is so near.
Moshiach’s almost hear.

Moshe Rabainu and the araivim,
Children of Har Sinai…
Will see fulfilled a dream of glory
Of golus days gone by.

Anu rotzim es hamoshiach
rotzim ohso achshav
Eem hatankeem v'hamevtzaim
neetzachnu bakrav.

(chorus) Aim mosai koaseemar,
When the well-springs will reach so far. **
The ge’ulah is so near.
Moshiach’s almost hear.
**Second time change the words to:
Yerushalim will be ours for ever more, ever more!

I came back in for the rest of the program. I thought that I would be able to sneak out, but Rabbi Klestzick thanked me for coming at the end. (I had sort of hid in the corner of the gym where you first walk in.) Then I was asked to get up and be in a picture with the kids and their new siddurim. I tried so hard to smile, but I just couldn’t. I am sure I look awful, but it’s ok, because even though I can put on a nice shaitel and some makeup, it doesn’t cover up my heart which feels like it’s been through a meat-grinder. I am glad I went. It was a good first step, even if it was hard.
Shauly’s Hebrew birthday was today. I managed to bake him a cake, and Goldie put a lot of the little Pokemon cake toppers I had. We had a small party for him with our kids and my in-laws. It was very bittersweet knowing Yossi wasn’t there with us.
I got a response from my letter to the American Cancer Society (AMC). I had asked them how much money they raised in 2000 and how much went to childhood cancer research. Here is the exact letter I got back:
“Based on your message, it seems like you are interested in knowing the American Cancer Society's income for the year 2000. According to our publication "The Challenge - Annual Report" the American Cancer Society's income for 2000 was $746,000,000. You also mentioned that you are interested in knowing how much money was spent on childhood cancer research in the year 2000. Childhood cancer is very important to the Society and to the research program. As of January 1, 2000, the Society had 60 grants in effect totaling $ 22,561,000 related to childhood cancer. In 2000, we devoted $7.5 million to grants in childhood cancer.”
If you do the math, you will see that they only donated 1% of their budget towards a cure for our kids. I am trying to gather up figures to take with me to Washington next month. I am going June 19-21, but I am not speaking before a house or anything. It will be private meetings with various congressmen to try and get more money allocated towards research. Think of Yoss the next time you hear about your tax dollars going to buy a $10,000 toilet seat or some other frivolous cause.
I heard from another cancer parent in Atlanta. One of the kids who got the drug that I found for Yossi is doing very well. Here is the letter Lori sent me:

Dear Leah,

I thought you might like an update on Bethany. She is doing very well, and they are calling her a miracle child. What I didn't want to tell you before was, they had given her only a 1% chance of survival. Apparently the medicine worked. She will have a brain scan done sometime this week and if it is clear she will go to transplant soon. Prior they couldn't get her into remission, couldn't give her any more chemo and she came down with the fungus. It looked pretty hopeless.

I actually met her at a Braves game recently (during an event with the Children's Hospital here in Atlanta) and she looked pretty good. She was having trouble walking, but other than that seemed to be enjoying herself. Her parents were very grateful for the information on the medicine.

I know this won't bring back Yossi, but think what a mitzvah you and your website accomplished in his honor. Even if in the long run Bethany doesn't make it (and you certainly know the risks of transplant) the information from you has allowed her some additional, quality time here with her family. It is truly amazing she is here today and you are somewhat responsible for it being so.

I will continue to update you as I hear information, if you would like.

Warmly,
Lorie

I tried a while back to start a support group for Jewish Parents of kids with cancer. I was sort of happy that I really didn't know too many other parents. Now I got an email from a woman who wants to know if there is a Jewish support group for bereaved parents. Since so few people signed up, I would like to change the purpose of our group. If you know of any Jewish person who has lost a child, please send them to this site: acor.org and have them sign up. I also belong to a support group online for bereaved parents, but I find some of our beliefs are different and I don't want to hurt anyone's feelings, especially a person who is mourning the loss of a precious child. Well, that’s it for now. I am working on trying not to feel angry. I know in my heart that G-d has a plan, and that there is a reason. I know that Yossi is in a good place. I am mad that he isn’t here with us, and it’s foolish. When I get before HaKodesh Baruchu, I will feel like such a fool, since everything will make sense. So that is what I am working on. I did have two very special dreams about him this week. Two nights ago I dreamt that he called me from the hospital, and he had woken up. I came there with the baby, and Yossi was playing games with Michoel. He had hair and he looked fine. He told me that he was fine. The dream I had last night was that he was getting ready for camp, but he didn’t want to go. We drove him up there, and then he wanted to be there. I don’t remember the whole thing, but I do know he was OK. This is good enough for me. I KNOW MY YOSSMAN IS FINE. I know he is waiting for us so patiently. To him this is going to be a blink of an eye. It’s just hard for us because of how long we will have to wait. Unless you all keep doing good deeds, and help me to bring Moshiach …
Good Night!!!


May 30, 2001

I have been reading a book about bereavement called After the Death of a Child. It’s interesting because all the people that were interviewed for the book lost a child at least 5 years prior to the interview. The author who herself lost a son wanted to get a perspective of people who are farther out from it than she was. Well, I got to the part where she discusses G-d in the whole picture. I was absolutely floored by what I read. 30 people who all either think that there is no G-d, or else he was powerless to save their child! I am shocked! How can not one person stand up there and say that G-d CHOSE not to save their child? A few of them feel, based on Harold Kushner’s book (Why Good Things Happen to Bad People) that G-d was UNABLE to save them. Even a tiny little blade of grass moves in the wind because G-d wills it. If such an insignificant event requires G-d attention, how much more so does He pay attention to our lives? I then realized what people meant by “Hamakom y’nachem eschem…” (HaShem should comfort you among…) I thought that HaShem was going to provide me eventually with a comfort. I have searched in his for a “nechama”, a comfort. Well, I was looking in the wrong place. HaShem IS the comfort. I believe. I know He was has a reason, and this was not some random act of fate or a fluke, or just bad luck. No wonder those poor souls are still so lost so many years after losing their children. They have no reason to go on. A bunch of them say that they lost their desire in life. I can see that. Life for them has no meaning. One woman said that she will never see what good has come out it. This is from a woman who went on to get legislature to cover more gun control in Maryland! Now I am not saying that what has happened to us is “Good”, even though everything G-g does is for our good. I am saying that I do see a lot of good that has come out of it, and continues to come out of it. Michoel says that none of it was worth it. Yes, I agree with him. If you said to me, “Yossi will die and all this good will come out of it or he will live and it wouldn’t come” you all know what I would choose. I miss him all day, every day. There isn’t a day that has passed by that I haven’t thought of him. I miss his kisses and hugs so much. I miss speaking with him about things. I miss buying him slurpees and taking him to Toys ‘R Us. I miss buying him books that I know he will devour with a ferocious appetite. I miss him. I miss his being here with us. Forever is such a long time. But with HaShem by my side, I am going to get through this. I feel lucky that I have such a strong belief. I know that it’s going to help.
Shavuos was hard in the sense that it was the first time we ate together with my in-laws. Every Yom Tov has always had us eating together. This was supposed to be the first time we have a mezuman for bentching! All these years and now we have to wait 5 more years. It’s so hard.
We can still continue to help Yossi by doing good deeds. I want to encourage you all to do something each and everyday for him. Since he isn’t here to do for himself, we need to help him. I personally have recommended to people to say Asher Yatzar, since one of the things that happened to Yossi was that his kidneys shut down. It should be in any prayerbook. We should also continue to give tzedakah in his memory. The high school has $7950 in his memory so far. Thank you to each and everyone of you who has helped me with this.


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