*At 11:12 tonight (March 10, 2001), Yossi Chaim returned his pure and holy neshama (soul) to his Creator.*
Last night just after candle-lighting, Yossi's blood pressure dropped. We had them increase his dopamine, which didn't help much. At that point, we knew that we were nearing the end.
All day Yossi clinged to life. His heart beat was around 102 most of the day, and his blood pressure was barely enough to substain life. But somehow he held on. I layed in bed with him all last night and most of today.
After Shabbos was over, we spoke with Rabbi Bart about turning off the dopamine. We also spoke with 2 heart doctors from home, On Topaz (whose son Guy is one of Yossi's close friends) and Bill Moskowitz. After speaking with them, I knew that Yossi was too far gone, and that there was no way he was going to improve. We turned down the dopamine, and finally turned it off. Meanwhile, Rabbi Ginsberg and Noam Jaffe came and sang to Yossi for Melava Malka (after Sabbath party). It was really beautiful and befitting. Lisa, her husband Smulik, and their children came and sang as well. Soon Yossi's heart started to slow down, and they left. I was laying with my arms wrapped around Yossi. His heart really slowed down, and then we saw small flat lines. I started to sob and hold onto Yossi. After he passed, Rabbi Ginsberg came in, and said a minyan (ten men) would be here shortly. I hugged Yossi, and held him a little longer. I got off the bed, and Michoel layed down next to him. After he was done, the minyan came in and said tehillim (psalms) with a lot of devotion. When it came to the Shema, Rabbi Lieff broke down. We left after that to go figure out what we are doing.
I can't stress how wonderful, loving, and caring everyone at the hospital has been towards. The doctors and nurses made doubly and triply sure that everything would be done properly. It was an amazing zchus for Yossi that the minyan was right there to escort him towards the World to Come. The community here in Minneapolis has been like life-long friends to us. They have helped and made all the arrangements we will need to bring Yossi home. I know that the whole Richmond community is awaiting us to help us mourn.
We think that the lavaiya (funeral) will take place Tuesday morning. I am not sure of the time. I will post that hopefully tomorrow after I am home. Since the whole world has joined us, anyone who would like to attend should. If you are traveling from out-of-town, and need a kosher home to stay in, please contact Judy.
Please continue to do good deeds in the memory of Yosef Chaim ben Breindle Leah.
Last night I was supposed to go to sleep, and then pack up the hospital room with some friends in the morning. But I realized that if I did that, I would run into people, and I really wanted to do it at night when there was no one around. It was so spooky to walk into the room, and not see Yossi there. Not only that, but the bed had been turned to take him out. I never saw the bed in that position. It was impossible to clean anything, so we had them take the bed out. That was even stranger. So we emptied out the room. As we left, we walked by the bed Yossi was in. I thought, YUCH, I wouldn't want to be the next person who gets a bed that someone died on. Then I realized that probably every bed has had that happen. Yuchy places, hospitals. (Except the maternity ward.)
We got picked up around 11am and they drove us to the school. The hearse was there. There were a lot of people there, people who we didn't know personally, but who had been touched by Yossi's story. Rabbi Lieff led everyone in prayers. As is our custom, we all followed the hearse on foot. (We are accompaning the soul who cares about it's body. Everything that we do is called a chesed shel emes, a true kindness. When you do a chesed, a kindness for someone, they can pay you back. But when you do a chesed for a mais (dead person), that person can never pay you back.) When we approached the synagogue, the hearse stopped, and the rabbi opened the door for Yossi to be able to pay their final respect to the synagogue. That is when Rabbi Lieff started his hesped (eulogy). It was heart-wrenching. He cried out to G-d that this is not the true nature of the world, for a parent to bury a child. He explained that normally a child buries a parent and he becomes like their knee. The person's life has ended, but their children continue to hold them up by learning and doing good deeds. (In the next world a soul is unable to do good deeds, and he relies on us to do them for them.) Rabbi Lieff asked all the people in Minneasota to become Yossi's knees, and hold him up by doing good deeds for him. The next part was to accompany me and Yossi to the airport. Yossi had an incredible zchus of having at least 25 cars follow us. It was so surreal. This is the type of respect that is paid to a big and important person. Yossi had only been in Minneasota for 8 weeks (to the day). At the airport, Rabbi Lieff begged Yossi to forgive him for any wrong doings the community might have done. Then he asked him the most beautiful thing. The week we arrived, there was a 12 year old boy, Eli Dorfman, who was hit by a car and has been in a coma all these weeks. Rabbi Lieff asked Yossi to please be an advocate for him. (Yoss is such a good boy that I know he will!)
Seeing Yossi being taking out of the hearse was very difficult. My father in law was one of the men who got to carry him to where he was going to stay until they loaded him onto the plane.
It was such a horrible feeling to be flying home, and knowing that Yossi wasn't at my side. Instead he was lying in a box down in cargo. When we got to Richmond, I wanted to see him one more time. I asked if I could accompany him to the van (that would take him to the funeral home). I rode with him. As they pulled him out of the cargo tram, I said to him what I always say before I went to sleep. (I used to whisper it into his ear every night.) I said "Mommy loves you". Since the neshama (soul) hangs around the body until burial, I know he knew I was there.
Coming home was such a strange feeling. It was like de-ja-vu. I walked around and looked at all my stuff. I felt like "Oh yeah" and "Look at this".
We should all continue to say prayers for Yossi, and do good deeds. This is going to continue to add to all the merits he has accumulated until now. After his burial on Tuesday, I imagine that he will ascend up to Hashem with this light that will radiate off him. He will be carrying with him everyone one of the prayers that was said for him, the tears that were shed, and the many many good deeds. His life is not over, it has just begun for him. As is our custom, we now pray for him using Michoel's name. So continue to pray and do good deeds for Yosef Chaim ben Michoel Dovid HaLevi. (Yossi Chaim son of Michoel Dovid, the Levi.)
I forgot to mention that anyone who wants to attend should. The service will be at one of the synagogues that Yossi loved to attend. It was also the one that Yossi last attended and danced at his best friends Bar Mitzvah. If there are out of towners who will be needing where to stay, please email Judy at the email address below. (This is one long update!) In lieu of flowers, our custom is to make donations. Yossi's class at RTA was supposed to be the first class in the new boys high school of 2002. It is a dream of mine that the high school be named after Yossi. If you would like to make a donation, you can send a donation to Rudlin Torah Academy,(ear-mark it Boys High School), 6801 Patterson Ave, Richmond, VA 23226. You could also make a donation to Chai Lifeline, the organization that has given Yossi many happy memories.
I will update the site after the funeral, Please G-d. After that my goal is to put up the many beautiful letters about the impact Yossi has made on many peoples lives. I would also like to put a better photo album up. So check back periodically. As much as I know that Yossi is in such a better place, I miss him and want him in my arms. I love planting those kisses on his cheek. Thank you to everyone who helped Yossi to survive for as long as he did. Each and every prayer did something, somewhere for him. You all have given Michoel and me the strength we need to get through this very difficult time.
Dearest Leah, amu"sh
I want to thank you again for sharing your family Yossis' A"H life with us. You have precious children and you and your husband are people whom we all hope to learn from. By the way I live in Minnesota. It's hard to think that Yossi and the Paley family aren't here with us. I am a mother of several young children and my heart physically ached at the levaya. Oh, the correction I wanted to tell you was that there were AT LEAST 40 cars that were milave (accompanied) your precious Yossi to the airport. I must admitt to you that I CANNOT believe the koach (strength) that you and your family have. You must keep it and be strong and as you say B'simcha (be happy) the way Yossi was and would always want it! Yossi and the Paley family will not be forgotten in our everyday lives and in our hearts.
Hamokom menachem eschem bsoch sharai tzion v'yerushalayim. (This is the passage that is said to mourners. It means "You should be comforted among the mourners of Zion and Jerusalem".)
I thought that losing Yossi (Z”L zichron l’bracha [his memory should be a blessing]) would be the hardest day of my life. I was wrong. Today truly was the saddest day.
We got to KBI early so we could get a chance to say our final farewells. We believe that a person’s neshama (soul) stays around the body until it is finally buried. So we could talk to him and he was right there. When I got to KBI, and I saw the aron (coffin), I hugged it and kissed him and cried. My grandfather got very upset, and told me he had never seen me cry.
Michoel, Goldie, Shauly and myself had to “tear k’reah”. This is a 3 ½ inch cut we make on the right side of our outer garment. It symbolizes that our son (or brother as the case may be) has been ripped from our life. As the synagogue filled up, we began the service. The first part was tehillim. After that I think that we had the eulogies (hespid). (I know you all understand that my memory is a little faulty here…. It’s been a very long day.) I spoke first. I read a letter that my friend Jocelyne posted to our list serv on Ped-Onc. Then I followed the speech I had written, but instead of reading it, I said what I thought I had written. (I forgot to say some of what I had written. Oh well. The link will take you to what I had planned on saying.) Then Michoel spoke from his heart. When he spoke, we could hear people weeping openly. My father in law spoke about his fond memories of Yossi. Shauly and Goldie read a beautiful poem that Ari Freedman from Ohr Meir sent me last night to comfort me. The next one to speak was Yossi’s Hebrew teacher, Rabbi Sherman. Dabney Lewis, Yossi’s civics and language arts teacher was next. He spoke very elequently and in poetic form. Finally, Rabbi Kranz spoke and sang Yossi a song about his soul being accompanied up to Heaven with the angels. Then Rabbi Ron opened it up to whoever wanted to come up and speak. Jonathan Ben Ezra spoke beautifully. Cari Duval, a nurse from the BMT clinic also came up. Finally, Mr. Scott, Yossi’s first tutor came up to speak. Then we took Yossi to his final resting spot. Our motorcade this time had over 150 cars in it! It was so long that we could not see when it ended.
Once most of the people had gotten out of their cars, the pallbearers got took Yossi out of the hearse. The family walked in front of the coffin. When they put the coffin down on the hole, Michoel and I hugged it one last time and sobbed. It was our final farewell. My mom threw in some rocks from Arizona and told Yossi to remember all the good times. Then they lowered the aron into the hole. Michoel and I had to shovel the dirt onto him. I cried and shook as I did it. I truly can’t believe that my beautiful and gifted Yossman is now laying in the cold ground. I know that the REAL Yossi is up in shamayim (heaven) with G-d, but I still want to shower my Yossi with kisses and hugs. I have to settle on videos to hear those precious words, “Mommy, I love you.” (Side note—every parent should shower their kids with extra kisses … You never know what tomorrow might bring.) My kids then shoveled some dirt into the grave. They also had some dirt from Jerusalem that they sprinkled on top of the dirt. After a few minutes, Michoel reminded me that I was supposed to remind Yossi to remember his name. I called out to him, “Yosef Chaim, remember your name”. (The soul sometimes becomes flustered in front of G-d himself, and can’t remember his name to claim all his good deeds.) After the grave was half full, Rabbi Ron asked all the friends of ours to form two lines. We were supposed to walk through them as they offered the words of condolence. Michoel had a very hard time leaving. He was stooped over near the grave, and wouldn’t get up. I told Rabbi Ron that they were going to have to drag him away. His mom and dad helped him up, and we began the long walk back to car. It was so hard to leave Yossi behind. Then the most amazing thing happened. It began to rain. At first it was just some drops, and then it began to come down. As we were walking through our friends, I kept my head down as I was sooooo sad. When we got into the car to go back home, my brother pointed out that it was raining only over the cemetery. There were blue skies in front of us. As we drove away, the rain began to subside. It seems that the angels in Heaven were crying with us today.
Back at home, we are sitting shiva. We have a lot of rules, but they make a lot of sense. For instance, we have to sit on the floor or on a low chair. When people come in, we do not rise to greet them. They are not allowed to speak to us first, but must wait for us to speak. That way, if we don’t want to talk, we don’t have to. We are not allowed to leave our house, and our friends and family have to do all the work, as we are not allowed to work. Once again, our community is wonderful. For our prayers tonight, we had such a full house. We have received so many platters of food and stuff. This whole situation is so hard, but having the love and support of our community has made the burden a little easier to bear. We are like one big family who has all lost a son.
One thing that is very important to me is that Yossi’s memory not be “erased” from this world. I feel that by my reaching out to all of you, and telling you his story, you will remember him. I told my kids today to take upon themselves one mitzvah (good deed), and do it everyday. Do it in his memory, and not only will he never be forgotten, it will continue to add to his zchusim (merits). It would be nice if you would still continue to say his tehillim, #13. It will still change to # 14 on his Hebrew birthday, which falls out on April 20th this year. So I will end as I always ended, sort of ... Please continue to pray and do good deeds in the memory of Yosef Chaim ben Michoel Dovid Halevi. (If anyone is interested in learning Misnayos for Yossi's neshama, please contact Dovie to see what is left.)
My cyber-friend Dovie has created a site that will make assigning the parts of learning easier. Click here to go there, then close the screen to come back. Thank you Dovie for arranging this for the YossMan (A"H). This means a lot to all of us.
Each day gets harder and harder. Today I just didn't want to get out of bed. I spent a lot of time in Yossi's room today, just looking at his stuff, trying to feel connected to him. I was very excited to find a cassette tape he had made. When I put it in to listen to it, the first part of it had been taped over. I also found an old diary he had from his first Disney trip. He wrote in it for a few days, and then stopped. It was so neat to see his thoughts, even though they were very personal. I wish he had kept it up.
Michoel is having an even harder time. He spent most of the day in bed. I would love to have crawled under the covers and buried my head too, but I felt that one of us should be out for when people come by.
I was very happy that a friend, Yenti Frost, came by. I met Yenti after reading an article that she wrote about the program she runs. She connects sick children and their siblings with classes. One class is for the sick child and one for the sibs. I'll never forget my kids faces when a package arrived 3 years ago with only their names on it. One of them said, "This is only for us, not for Yossi." (It was the same reaction Chanie had when my friends in NY sent her that birthday package.) Anyways, I met Yenti in person once 2 summers ago. It was great that she came. She also went into the school and spoke with Yossi and Goldie's classmates. Thank you Yenti!
I am actually a little excited for tomorrow. There are a bunch of Chai Lifeline counselors that are supposed to come down. I am not sure if this is for sure or not. I want to talk to some of the boys Yossi was close with. One of them is his counselor Ari. I have pictures that I have found of this summer and the past Disney trip and I want to know more about them. I just want to hear stories about my YossMan that I haven't heard before. It gives me such nachas (pride) to hear how other people knew him.
On another note, as I get the speeches from yesterday, I will add them to the earlier update. Just check the note next to the update with when I added a new link.
Oh yeah, one more thing. Someone mentioned to me that they are now going to stop doing the mitzvah (good deed) they did to help Yossi get better. I felt sick when I heard this. I feel like it's disrespectful to his memory to do that. I know I said this before, but here goes again. Grandpa was very sad over Yossi's relapse. He said that he didn't feel like davening (praying) anymore because He isn't listening. Yossi told Grandpa, "Perhaps you have to pray harder." Dear cyberfriends, Hashem is listening. He continues to add all these good deeds to Yossi's merit. Please don't stop what you have done in his honor. Please continue to say his tehillim, give charity, and most of all, try to make this world a better place by doing acts of kindness. If after all that we went through people stopped what they were doing, well then, it will have all been in vain. I would get some comfort in knowing that not only is Yossi's legacy going to live on, his short time on this world will have accomplished something.
Do it all for Yosef Chaim ben Michoel Dovid HaLevi.
This is soooo hard. I can't begin to describe the pain I am feeling. It's like a part of me is dead. The pain is so intense, I can almost touch it. At times I just can't believe it's real, and at other times I am just so sad. Each morning I am amazed that sun remembered to rise, and that the world is still going on. Food has absolutely no taste, and I am so cold. I keep turning the heat up and putting on more layers, but I can't get rid of the cold.
Shabbos was especially hard. Goldie asked me just before candle-lighting if I still light a candle for Yossi. (Of course I told her, I always will.) Next I wasn’t sure what to do about his chair or his kiddush cup. We left the chair there, but we didn't let Shauly use the cup. During Kiddush, Michoel broke down. I know what he was thinking. Yossi used to always make kiddush with him. Last night, all the kids ended up sleeping in our room on the floor.
Today has been the hardest day yet. The kids all went out after the afternoon prayers, so it was just Michoel and me. We both slept for most of the afternoon. I had a dream about Yossi. I must have been looking at the pictures of Disney too much, for I dreamt I was at Disney with the baby and Yossi. I was crying and crying. As Yossi was pushing the stroller, I told him he was too close to the car, and they were going to get ran over (G-d Forbid). At that point, I was sobbing. Throughout the whole dream, I never saw his face, it was just his jacket I recognized. I cried to him that it was just too hard. At that point, he disappeared, and I awoke with a start. I felt my face to see if I was really crying, but I wasn't. I woke Michoel up and asked him if he had just dreamt of Yossi. He said that he always dreams of him. After he went back to sleep, I laid there thinking for a while. Did Yossi come back to me like I asked him to? I felt like I had let him down, as I promised him that we would all be OK. My biggest concern now is that Yossi is in Olam Habah (The World to Come), and seeing how hurt we are. I don't want to cause his neshama any tzar (suffering), but I miss him so much. I love him so much, and yearn to hear him tell me he loves me, or to kiss me. The day before he passed away, I hugged him and kissed him so many times. I was trying to make up for the all the days I would want to kiss him. What I didn't realize at the time was that I would be missing those kisses he gave me back. Yossi had this way of knowing when I was down. He would come up to me, and ask me for a hug. What I wouldn't give for one of those hugs now.
People have asked us what can they do to help. We all know that there are truly no words for us. There are a couple of things you can all do. First and foremost, hug and kiss your own children. Don't sweat the small stuff. In the end, it really doesn't matter. All that matters is the love your children got. Second, continue to do good deeds. It's very important to me that the world not forget Yossi. I feel the best way to do that is to help with our boys high school. I feel wierd asking all of you for this, but I don't have the funds needed to do this. You can check out the school site, but it's really out-dated. (Michoel was webmaster, but we have been a little pre-occupied.) The site is Rudlin Torah Academy. The address for the school is there. Another thing people can do if they haven't done yet is to donate blood and to sign up to be a donor. When Yossi passed away, he had recieved 208 transfusions. Yes, I counted each and everyone of them in the book where they keep the records. So you can see how important those blood products are. The final thing I would ask is anyone who can learn to please do so. It's very important, and there are still a lot of sections that need to be taken. The form is on Dovie's site. Thank you for all that is being done for Yosef Chaim ben Michoel Dovid HaLevi.
Another day has gone by. Each morning the sun has risen, and it continues to amaze me. The world is going on. Doesn't everything in this whole world know how much I am hurting? I look out the window, and see life goes on, and I just want to scream. It just seems so wrong.
This morning we got up from shiva. After the morning prayers, we sat for a while longer. Then Michoel and I took a shower, changed our clothes, and put back on our leather shoes. Then Rabbi Ron said the final Kail Rachamin (a prayer for the dead), and we started on our walk around the block. It would have been a lovely spring day, with the birds chirping, etc. But the world seems a little darker now. We spoke about the headstone, and what it should say. (It will have his name, dates, and a short sentence, all in Hebrew.) We spoke about how Yossi might be sensing our sadness, as his neshama is still attached to us. Just as we go through this grieving process, his neshama goes through a separation process. He will always be attached to us, and he will always remember, but he will become fully connected in the next world. Rabbi Ron also stressed to us, especially Michoel the importance of establishing a routine. I guess he is worried that one or both of us will fall into a deep depression.
My step-father's brother arrived yesterday, all the way from England. It took me by surprise. There are a lot of family and friends who have come from Arizona, California, New Zealand, New York, Baltimore and St. Loius (and more) to be with us in our hour of need. (There were people who came who we don't personally know.) I have gotten a lot of comfort from it. Michoel appreciates all that everyone is doing, but he doesn't get any comfort from it. He says that none of it will bring Yossi back. I understand what he is saying, but we are both grieving in different ways. While I am reaching out to others, he is turning inward. I guess that has always been our personalities. We both miss him terribly. There isn't a way to describe the pain. Anyone who is lucky enough not to have lost a child can't understand this. I thought I could emphasis with my friend Michele who lost Missy two years ago. Now I see how wrong I was. No one can know unless you have been here. And my pain is different, cuz we had the "perfect" death (not cold and clinical, he was in my arms, etc) while Michele was robbed of this. Now I understand her deep desire to have Missy back. It's not like he is away at camp. He is gone in the sense that I will never kiss him again, hear his sweet "Hi Mommy", etc. I feel robbed of being his mommy. I can understand in my brain that G-d has a plan. It's my heart that is aching. The only comfort I get is that Yossi is in a better place.
Michoel went to the library today. (It's the first day we could leave the house.) We had a problem that Yossi checked out a book back in November. Yossi had planned to take it with us, but somehow it didn't end up in Minneasota. We thought he had left it behind. His friends looked at school, in his desk, in his locker; it was no where. My in-laws checked at home in his backpack and in his room. No one has found this book. Michoel had contacted the library who waved the fines for us. Today he spoke with one of the librarians in the children's section. When he mentioned the book, and she pulled up the record, she asked Michoel if Yossi had a Harry Potter book signed by JK Rowling. When Michoel told her that he did, she remembered him. She was very impressed with Yossi. With how happy he was and how intelligent he was. She told Michoel she spoke with him for about 15 mins.
Dovie told me that he has gotten all the slots filled for the learning. Now we just have to figure out when the shloshim will be. (The shloshim ends right before Passover begins. We might just do a siyum for the completetion of the learning.)
Please read some of the beautiful letters. Hug and kiss those kids! (I will never understand how a person can abuse their kids. Don't they get that they are gifts from G-d?) Keep doing those good deeds, and thinking of Yosef Chaim ben Michoel Dovid HaLevi. ps-- Please don't ask us how we are doing. We just lost our son, that is how we are doing.
It has been a while since, I, Papa wrote, so I felt it was time. I still really can't comprehend the fact that the Yossman is gone! It doesn't seem real. Maybe he is just away at camp, or Disney, or at Grandma and Grandpa's house?! How can it be that I will never again walk down the hall to my room, stop in on Yossi and turn off his walkman that he has fallen asleep with? How can it be that I will never again have to remind him to take a shower or brush his teeth and then find out that when I am ready to go to sleep, he is just getting ready to take a shower in my bathroom? How can it be that I don't have anyone to tell me the latest sports news or computer news? There is such a big void in my life right now. Also, for most of the last 3 1/2 years we were consumed with Yossi and his struggle, going to the hospital for inpatient or clinic visits, taking him for chemo, talking to doctors, researching treatments, and most importantly just worrying about Yossi. While obviously in some way it is good and a relief not to have to worry about that anymore, it still leaves a big gap in our lives, and of course we would have preferred if it was resolved with him being cured, not this way. Like Leah mentioned in her last update, we were told at least to pretend to go back to our normal lives as much as possible. Otherwise you can sink into a deep depression that I imagine would be very hard to recover from. So, we are trying, but it is way too hard. Plus, I feel so guilty doing normal everyday things. Shouldn't I be sitting all day and crying for Yossi to come back to us? Still, I go through life in a daze, I noticed that I don't walk anymore, I shuffle like an old man. Out driving, I find myself not paying attention to the road, finding it hard to understand how I got to where I am. It is all so painful that I find it impossible to really focus on the fact that he is gone for too long. I could never bring myself to tell Yossi in his final days that I will always remember him. That seems so ridiculously trivial to say that, like I am remembering a famous news or sports event. How sad is it to have to say that to your child?! This will always color our lives. Sure, the brain will dull the pain and the memories, but to me that is even sadder. I don't want that to happen, I want to always feel this intense pain, anything less is a slight to Yossi. We were also told that it could cause pain to Yossi to look down at us and see us suffering. But, I thought that if he looks down and sees us happy, maybe he will also feel bad, feel that we don't really miss him that much. Like I said, this will dominate our lives to the end. 50 years from now we will be old and gray and sitting there crying over Yossi and the fact that we lost him so soon. Yes, I am selfish, for me, I want him back so badly. I wish there was some way, ANY way that I could be with him right now. Yossi, I love you so much, and miss you even more, if that is possible!
It's another day, and another day that Yossi isn't here. It's so hard. Little things set me off ... I found a piece to his Nintendo yesterday, and it made me so sad ... Just thinking that he will never play his Nintendo again ... Today I was searching his room. I really wanted to find some of his old compositions he wrote. Whatever he did with them, they aren't in his room, his backpack or at school. I searched his computer, but there were only boring assignments. I did turn up a few rough drafts he turned in. He was an amazing kid. I am going to type up one of the ones I found fasinating. I am calling it "The Tree", for lack of a better title. It is a very poignant story. It makes me wonder -- Is this yet another message from him to us that he is OK, and things will get better? I am hoping to turn up some more work. He did write two pieces about his winter break, and how crummy it was to have to get chemo the first week, and then be in-patient for 3 of the days the next week. See, he never complained to us!
Michoel and I went to the unfinished furniture store, and ordered an armoire to store Yossi's personal belongings in. It will take 4-6 weeks to get in. Then we have to decide if Michoel is up to staining it, or if we want the store to do it. The armoire will stay in our room, right near my bed. It has 5 small drawers, 3 large ones, and 2 shelves. It should be large enough to hold most of his stuff, but not too large it will over take our room. My friend Karen from my Chai Line (a phone group that Chai Lifeline has to help give us support) told me about this. She lost her 2 year old Jacob to cancer 2 years ago. (Cancer really sucks.)
I mentioned in my last update that Dovie has set up a seder for learning Mishnayos in Yossi's zchus. It turns out the counselors from Camp Simcha have also done the same thing. There is just a few meshectas to go in seder Teharos. You can email Moshe Reiss and he can fill you in on what is left. We are plannig on doing a world wide siyum on Thursday, April 5th. This is different that what is on the Mishnayos site. The reason is that day is the day of the fast of the first born. It makes more sense to have the siyum on that day. Rabbi Ron said that it's ok for Michoel to do it here, as he is going to learn Sanhendrin. (It is very bittersweet, as Yossi and Michoel learned this one together.) From what I understand, everyone who learned a mesechta can make a siyum where they are, but I am not a rav, you will have to check with your local rabbi. (I am sorry if there are a lot of Hebrew words here, I just don't have the patience to translate them all. Sorry.)
We ordered the matzavah (head stone) yesterday, and it should be up in time for the siyum (completion party) and unveiling on April 5th. It's a Jewish woman's worst nightmare, as it's so close to Passover. (There is just so much work that goes into the preparation for Passover.) We are very lucky that our friends in Richmond and Chai Lifeline have arranged for us to go to a hotel for Passover. I was terrified that I would have to cook and clean. Plus, the thought of having a seder at our table with Yossi not there is just unbearable. So we are going away, and it will make things a lot easier. I can't even get the energy to get out of bed... give the kids dinner ... laundry ... all I want to do is either lay around and watch videos of Yossi, or I stay in his room, or I work on his site. Michoel keeps finding me in his room, in tears. He asked me why do I always go in there, if it upsets me so much. To me, it's the one place that is really him. I love to touch his stuff, look at his pictures, see the toys that were really special to him. It makes me feel so connected to him. Anyway, one more point on the matzavah that was hard ... Since Yossi's Bar Mitzvah was so close, it felt so wierd that most of my friends have been concerning themselves with invations, and here we are engraving a head stone. It's so unreal. I feel the same way about printing thank yous for everyone who did so much after his passing. We should be writing thank yous for bar mitzvah presents, not condolences. (I haven't even begun to think about that!!! Well, sort of. It's one of the things weighing on my head that needs to get done, but I don't feel like doing.)
This morning I had to put the baby's car seat back in our car. Anyone who has ever tried to get a locking clip on a tight seatbelt will know what a struggle I am talking about. Here I was, trying over and over to get it on. Finally, I just starting crying. I told Hashem, "You only give us what we can handle. This is too much. I can't handle this. I want Yossi back." I know that there is a reason. I know he is happy. I know that. But I still feel greedy. I want him here. Maybe I am wrong in the sense that his soul is so happy, it's where it wants to be. I am selfish in wanting to have him back. (The only thing that is keeping me sane right now is my faith. If I didn't believe in the afterlife, I don't think I could stand it.) My good friend Aviva told me many years ago when my great grandmother died that the soul cries and has to be forced into a body. We are happy and rejoice when this soul is born in the form of a baby. Then we are sad, and cry when the person dies. But the soul rejoices, it has been reunited with it's Maker, it's where it wants to be, and the sould is happy. But those who are left behind cry. I cry for all the toys he never got to play with. I cry for the backpack he bought with such joy in Mall of America, but used only once to bring his stuff into the hospital. I cry for the hugs and kisses I am missing. I cry for what I am missing. I feel like a brick is in my chest. I feel the weight of his being gone in a phyiscal sort of way. It's the first thing I think of when I wake up in the morning, and the last thing I think of when I go to sleep. I miss him with all my being. I always will.
I also found a lost update. I noticed that we had an update from the fall '99, and then it skipped to his relapse. I have readded the link to the few updates from winter '99 to fall '00. (During that time we felt that he was almost better, and had reached a point where we thought we might be done doing updates.)
One final thing. When I was looking into Yossi's documents on his computer, I found one called "I love you, Mommy". I opened it, thinking it was some love letter to me. All that it said was, I love you Mommy. Then I remember I had once come into Yossi's room while he was working on the computer. He had typed that message to me, and I had saved it when he was done. Maybe it's another sign from him?
Good night dear sweet Yoss. Mommy loves you.
A couple of people have been asking me how the other kids are doing, and I keep forgeting to let you all know. Goldie seems to be keeping it all inside. She will be 11 in June, and some of this may just be normal pre-teen emotions. Sometimes she is so helpful and loving. Then at other times, she is nasty and mean. I know she is hurting, but she won't talk to me about it. She did make one comment to me the other night "Now that I am the oldest"... I cut her off, saying that Yossi will always be the oldest child in our family. I know where she was going with this, but I can't hear it. Yossi was and always will be my bachor, my first born. I know that technically she is the oldest child in our family. It's a blow to me that we are set back 2 years in how old my oldest kid is. (I always looked forward to when Yossi would be 12, and could stay home to babysit the others. I felt 12 was the safe age, as that was the age I started babysitting.) It's also a very bitter pill to swallow that we have to wait ANOTHER 5 years to make a bar mitzvah. (I know that some people have to wait many years before making their first bar mitzvah, but this was stolen away from us weeks before. That is what is so hard about the extra wait.)
Shauly on the other hand at first tried to replace Yossi. He was wearing his clothes, wanting Yossi's favorite foods, and trying to be like Yoss. I kept telling him I love him for him. Shauly and I had a long talk, and I think he realizes that he doesn't need to replace him. The hardest part for me was when he cried, "Now I don't have an older brother." No, he doesn't. He said, "Now who is going to play Nintendo with me?" He has no one to look up to. No one to lead the way and set the example. Suddenly he is thrust into the big brother role for Sruli while having no one to follow. It's going to be a big adjustment for him.
Chanie is very clingy. She has been for a while, but even more so now. She cries in the morning that she doesn't want to go to school. She hollers if I have to leave the house for an errand and I don't take her. This morning she went off to school without an incident, but tonight to cried that she wants to be near me always. I don't know if she is afraid, or what. She sleeps with a couple of pictures of Yossi under her pillow.
Sruli doesn't understand too much of what is going on. From what I can tell, he wants us to go back to Minnesota and get Yossi. He has started to say that Yossi is "up sky" and that he is "with Hashem", but I don't think he understands what he is saying. I kiss him, and tell him to throw the kiss up to Yossi. Out of the blue today, he said that "Yossi died". It was very strange to hear it out of a baby's mouth. He hasn't asked to see Yossi in a couple of days. Everytime he asked me, I put on a video of Yossi. I hope that he will never forget him. I am glad I took so much video. One of the things I hope to do is to edit our videos and make one long VHS tape of Yossi for me and the kids to have. (I have 17 8 milimeter tapes so there is a lot of footage to look through.)
Michoel and I continue to struggle through the day. Today I had to set the time on my clock, and I felt exhausted. (Somehow reading letters and writing updates doesn't tire me out as much.) I have spent a lot of time in Yossi's room, trying to unpack his stuff, and get his room organized. I was fine all afternoon, until I came to the last hospital box. It has silly string, and Star Wars action figures he never got to play with. It had his game boy that he loved. I lost it there. That is what makes me sad. I know he doesn't care about those things now, but that is what I know he cared about here. (I know he is spending his time near G-d, learning the Torah and basking in the Divine Presence.)
I spoke with Hal, Noa's husband who is also the principal of our day school. I asked him point-blank how much money we need to get the high school named after Yossi. At first I was disappointed to hear a half million dollars. That seems like more money than I will earn in a life time. (I am a part-time teacher.) We broke it down into $54 donations, and all I need is 9,659 (or is it 9,259?) people to donate it. Yossi had an incredible friend named Debbie Rice who ran in a Leukemia Society marathon who said she would help me. I am going to make up charity boxes to put into schools and other places to help. I am totally dedicated to this cause, as this is something Yossi firmly belived in. (I fixed up the reasons down at the bottom of this page, before you get to the guestbook. Make sure you take a peek there before you click off.)
I scanned a few pictures of Yossi before his relapse, and as soon as Michoel can fix them up (they are a bit faded), I will start posting some of those for you.
As we were mourning for Yossi, I realized something I have never realized before. We have a "holiday" in the summer called Tisha B'Av. We mourn for our holy temples that were destroyed. Every year I fast and pray for it to be rebuilt. But it's just been lip-service for me. Now that Yossi is gone, I feel that is missing too. For when Moshiach comes, Yossi will returned to me. I know that this year I will pray extra hard because I know now what is gone. I feel awful that it took such a tragedy in my life for me to really understand this.
I look at all that has happened, and I see so much good coming out of it. I see the letters from people who have taken upon themselves to pray more (both Jewish and non-Jews), as well as doing good deeds. I see that the world is becoming a better place for my sharing Yossi's story. Yossi was happy that we had this site. I think he was very proud of the work we did. We didn't just do it for him, we did it for ourselves as well. We did it to help us vent and let out our feelings. It helped me to know that Yossi had the prayers of people around the world. It continues to bring me great comfort to see that people have been impacted by him, and tell me that they will never forget him. As any mother who has lost a child, the worst fear is that time will go by, and people will forget. I look around and see so much good in the world. People who don't know us who have reached out and helped us, become part of our family. The community in Minneapolis who continues to call and keep in contact. We have joined together in a bond that I hope will last a lifetime. The community here in Richmond has also been unbelievable. Between the two communities, we brought our son home to be buried with no worries. There have been no mundane concerns here. It is like our whole city has lost a beloved son. My friends tell me how they cry everyday. I have tied up Noa's phone line for hours, as well as other friends in NY. Old friends who we haven't heard from in years have called or come to try and bring us comfort. And then I look to the net. I see how people send us cards and send donations and send emails saying they will never forget. I feel like we are united with the whole world who is joining us in our grief. With an extended family like this, nothing but good will come out of it. I am truly sorry to have lost Yossi, but he isn't really lost. His physical body is gone, but his spirit is living on in all of you who has been touched by his story. This is what is getting me out of bed each day, the knowledge his memory will never die. We are a part of a much bigger whole. G-d bless you all! You have comforted me.
Continue to pray "Iluy neshmas (in memory of the soul) of Yosef Chaim ben Michoel Dovid HaLevi, and do lots of good deeds for the good of his soul.
I haven't been able to decide what to write for the last few days. As Michoel said to me last night, Yossi is still gone. Then, I saw that Yossi got an email from one of the girls at RTA, and it's a perfect letter. Sarah is in the 8th grade at RTA. She is a very sweet young lady, and has sent Yossi a lot of mail encouraging him to get well. I will put her letter in and put my reply in.
hey yoss, i know that you can't read this physically, but perhaps even as i write, you hear me. i have been thinking about you a lot lately, and one memory sorta was sticking in my mind. during winter break on a sunday my parents left me at ari's house all morning because they both had bingo that sunday. you came over and made latkes together (i think it was still channukah). i said then, and i'll say it again, that those were the best latkes i had ever tasted. even better than my mom's (but don't tell her i said that:) maybe they were good because you and ari are good cooks. maybe it was the spirit they were made in. personally i think it was a mixture of both. maybe you think it's kinda wierd, talking about latkes after purim. well, every channukah i'll always remember when i had the best latkes, and who made them: you and ari together. i know he misses you, and so do i. i cry sometimes, but that usually doesn't last too long, because i think about the wonderful time you must be having where you are. i want you to lobby Hashem for our cause, tell Him to bring Moshiach soon, because we really miss you. i feel like the rest of my life is just a space of time between when you left and when i'll see you again. i wish (but don't take it the wrong way) that it could be sooner than it probably will be. [sigh] i know that everything is for the best, but i just can't help but wonder…and wonder…and always be frustrated. i just can't understand the ways of Hashem, and sometimes i just want to burst. i can't take it. i read one letter to your mom (from Sarah Devorah) about how there are no words to comfort her. "I won't say, "You'll get over it" - because you won't." i really feel for your family, and your friends. they have so much pain, i'm sure that even in Shamayim you could feel your family and friends' sadness. i also feel like there is something i could have done, one less fight with my sister, one more tehillim, one more mitzvah, that i could have done. it really makes me feel bad, even though i KNOW that everything is meant to be and it isn't right that i should feel that one thing i didn't do swung the balance. i know it's not right, and yet, i can't help feeling that way. i also think about all the times i could have talked to you maybe a little more, gotten to know you a little bit better. it just isn't right, to me. to take away someone who had so many things he could do with his life. well, maybe everyone's right, and this IS what you were meant to do. i just wish it had taken you a lifetime of devotion, and not a blink-of-an-eye in sickness. but, as it says in The Chosen, "…a blink of an eye in itself is nothing. But the eye that blinks, that is something." you were quite something, you know. bringing together continents is something that no normal person could be expected to accomplish. i guess that just proves further how way beyond normal you were, still are, as a matter of fact. yes, your physical body may be buried (although no one cared for that), but your neshama lives on with Hashem, and you live on in our hearts. i love you yossi. hope to see you soon,
First of all, thank you so much for writing. I find for me, writing helps to get some of the hurt out. I am sure you also found it helpful.
Yossi and I enjoyed reading your notes while he was consicious. I didn't read the notes to him when he wasn't, as I thought he would wake up and read them on his own.
You are a very bright and intelligent young woman. None of us can understand the ways of G-d. We can try to rationalize things, and say "Oh, this happened for that reason, or for this reason." But we really can't. We just don't know. To me, I compare ourselves to a very young child. A toddler doesn't understand why mean old mommy won't let them eat candy for breakfast, or mean old daddy won't let them play with a knife or scissors. Yes, Sarah, it does hurt. For me and my husband, it's a phyisical hurt as well as an emotional hurt. We miss him the way a person would miss their legs if G-d forbid they were amputated. Yossi was so much a part of us. Because we loved Yossi, that is why it hurts. If we didn't love Yossi, we wouldn't miss him. I am not saying that any of this makes it easier. I still think of him first thing when I wake up and all the way through the day.
Sarah, I made a little mistake when I put up the beautiful words that Sarah Devorah sent me. She didn't write them; someone gave them to her when she suffered a loss. I got a lot of comfort from those words. I feel that there is nothing to say. I do want you to know that there was nothing in YOUR power that you could have done to prevent this. This is Hashem's will. He decided that it was time for Yossi Chaim to join him in shamayim. We did all we could. We do not know how our prayers and good deeds helped him. Sarah Devorah told me last night that our prayers might even continue to help US know to cope with this. When we say a prayer, it has a place it needs to go. The prayers always reach their destination. I was also concerned about the amount of prayers and good deeds that were being done for Yossi. It was tremendous. Then, after he passed away, there is a drop in the amount of what is done. My other friend, another Soroh, told not to fear. Everytime we did a good deed, or uttered a prayer, it brought down a light. The light doesn't leave. We can rest assured that the world truly is a brighter place for all that we did. We all tried very hard. Please don't ever blame yourself for what happened.
You were also so wise to say about "taking the time to know him better." How many times in our lives do we put things off, thinking that there will be time for it tomorrow? One thing I have learned through out this whole thing is to do things today. Life is too short for regets. Just learn from this, and try to make today better. Maybe we all need to learn to just take the time to get to everyone a little better, or be a little nicer to everyone. I know for me the world was a better place because he was here. He taught me a lot about courage and strength. Last night as I went to bed, I imagined him in my bed, snuggling up to me. I would much rather him actually be there, but I know he is close to us. Sarah, thank you for taking the time to write to Yossi (and me). Your words are beautiful and well beyond their years. And as you said, Yossi will live on in our hearts. Feel free to call or write to me if you need to!
Bill Lohman is a writer here in Richmond. He wrote an article about me, the internet, and Yoss 3 years ago. He had been following Yossi's progress (or lack of progress) for a while. Bill emailed me about doing a follow-up article, and it appeared in today's papers. The only thing missing from the article is the picture. Read the story here, then close the window to come back. I have no idea how long they keep the stories up, so check it soon.
This week my mother in law isn't coming anymore, so I have to get the kids up for school. (I am a night owl, so mornings are really not my thing.) I set the alarm both yesterday and today. After I got them up, I started thinking, "Why did I never have to do this before?" Then it dawned on me... Yossi knew how much I needed to sleep-in, so almost every morning, he would get the kids up! He was really so kind and respectful. I am in the process of watching our home videos of the kids, and last night (I am working my way backwards) I was at 1992/1993. At that time, it was only Yossi and Goldie. Yossi was 4 1/2 and Golds was 2 1/2. One day we went to the park. It was a few days before Shauly was born. Michoel was pushing Goldie on the swing. Then he got on the second swing. Yossi wandered over, and saw that there was no swing for him. He walked over to Goldie, and started to push her. I was blown away! I have been trying to figure out why he was so kind ... was there something different I did? I don't know. I see he always had a good heart. It did break my heart to see him say that he wants to be a policeman when he grows up.
I know that I shouldn't be doing it, but I am driving myself nuts with small regrets. I know I can't change the past, but now I wish I had known this was going to happen. I wish I had spent even more time at the hospital. I regret the time I went to the bathroom, and ran into another mother. We spoke for over an hour while Yossi was waiting for me to come back. I regret all the times I left him at home (I know it was at his request, but ...) when I was running errands. Those were all those extra moments I couldn't have "stolen" to be with him, and now they are gone. The hardest part of losing him are the "nevers". I will never hear those precious words, "I love you" again. I will never get to kiss him goodnight as I head off to bed. I will never know what happened to all his writing assignments. I found something in his room, and I will probably never know who gave it to him. He will never get to play with his toys again, or his Nintendo, or the new Play Station some friends of ours got for him. He will never see all those beautiful get well cards the JCC preschool made for him, as well as the tons he got after. I could just go on and on, but it's so sad. I KNOW HE IS HAPPY. I know he is content. But I am not. I grieve for me, Michoel, my kids, and our whole family. There is so much that I don't understand. I know Hashem will explain it all to me when I get up there, but I want to know NOW. I want my Yossi back. I want to go back in time, and just do some of it over. I want more time. I want Moshiach to come and make all of this right.
I am trying to look past the bad things in this world ... Why do good kids get cancer? Why do Mommies have to bury their babies? I don't know. I do know there is a reason. I think that if I didn't believe, I would be going nuts right now, as I see others around me. Some of our family is tearing themselves apart, and I feel for them. If you don't believe in G-d and an afterlife, what is the purpose of this life?
I am still working on my goal of a half million dollars for the boys high school. I am going to make up charity boxes to put into schools. I have a couple of other ideas as well. If anyone has an idea to raise BIG bucks, please let me know. It is praiseworthy for people to continue to say his tehillim, #13 everyday. Just before you say it, you should say "iluey nishmas Yosef Chaim ben Michoel Dovid HaLevi". (This means, and it's not a good translation, that the soul should "go up" [get credit] and it has his name.) Since Yossi is no longer able to do his own good deeds, we can do it for him. By saying iluey nishmas before we do a good deed, such as giving charity, or before learning, he will get the credit (as well as ourselves). It's the way to keep his memory alive, and help him in the next world to accumilate even more merits.
Once again, I ask for you to please remember Yossi by doing good deeds, and saying his tehillim once a day. Don't forget your kids... do things with them, especially those extra hugs and kisses. Hopefully you will never regret the time you've spent with them!
There was another article published about Yossi. This time it was in a paper in Amarillo, TX. It was written by Susie, the woman who wrote the letter I put in the inspiration section. You can find the article here. We were Amarillo for a couple of hours back in 1992. I was flying home from visiting my mom for winter break. The plane's windshield cracked. I was never so scared in all my life (at that time)! We had to make an emergency landing in the airport there. I was sitting with Yossi and Goldie in the bulk head seats, and as we were leaving the plane, we had a good view of the cock-pit. So what do I do? I whip out the camcorder, and record it for posterity. Well, as we are getting off the plane, there was a guy from the local news there. Wanting my 15 minutes of fame, I showed him the footage as the whole plane got off, with my kids at my feet. So what happens when we finally make our way to the ticket counter? We were at the end of the line. Smart move, huh? So that is my short memories of Amarillo. I do have a magnet for my fridge, and I did learn to never travel on Jan. 1 when I have to teach on Jan. 2, because it took us 3 more planes to make our way home that day. It was a VERY long day, to say the least.
Yesterday I had to drive by RTA. I got very nervous, hoping that no kids would be outside. The last time I drove by school, Yossi and his friends were outside, and I remember honking as I drove by. Now the thoughts of going into school give me the chills. I just can't do it when kids are there. I don't know why. Maybe it's because I see his face in every room, or because I remember those fantastic kisses I would get each time he saw me? Maybe it's the memories of "He should be here" when he was either in-patient or home too sick to come to school. Whatever the reason, for right now, I just can't do it. Maybe part of it is denial. I can be in his room, and I spend a lot time there. But when I got a list in the mail, and next to his name it said "deceased", it cut through me like a knife. I can't change my signature that I use in my support groups. So for now, I use nothing other than my name. I miss him so much. I see him everywhere. I see foods I made special for him in my freezer, and books I wanted to order for him from Amazon.com. I see games he would have liked to have played, or other things he would have enjoyed. And on top of everything else, I can only imagine what he would say if he knew we managed to lose the cable that hooks his Nintendo up to the power! (LOL!)
Today on Ped-Onc, my online support group, another mother told us that they found spots on her son's lungs. Sharon's son Shane had his leg amputated the week Yossi relapsed. We were both in shock and hurting, and we turned to each other for support. Shane had been doing so well, and Sharon was nervous for this check-up since they discovered the cancer had come back on his 6 month check-up last time. So fast forward 6 months from his amputation, and now Sharon is being told that there is nothing more they can do for Shane. With all our medical advances, there are far too few in childhood cancer research. Kids are dying everyday. Parents are having their worlds ripped apart by the words, "Your child has cancer". It's the NUMBER ONE KILLER diseaseof kids under the age of 15. I wish that there was more being done, but I only have enough enegry to focus on one "battle", if you will. I want that high school. Susie is trying very hard to get our story out. She is a writer, and is helping us to contact various people. Noa told me years ago I should write a book. I always told her that I would when the story was over. Now, in a sense it is. (But then again, his story will never be over. Thanks to all of you who will never forget him.) I have said this before, and I say it again. I love Yossi. I don't know if it's because he was my son, or if it's because of who was/is. I can understand his family, friends, and teachers, people who knew him caring. It blows my mind away how much he has touched the lives of so many people who didn't even know in person. So many people feel they know him through our site. There have to be hundreds of cancer kid sites. Why does his story touch all of you? Ellen, a friend through Chai Lifeline told me that it's his smile. It lights up from the inside. It's true. He had a million dollar smile, and when he smiled at you, it could melt your heart. Yossi always smiled. I can only think of a few pictures I have where he wasn't smiling (and there was a reason he wasn't smiling ... like Mommy was bugging him or something).
So we struggle through each day. We have good hours and bad hours. Silly things make us cry. One friend suggested that we try to think that Yossi is smiling at us when we see something that reminds us of him, but right now, for me at least, it's too painful. I am still focusing in on the nevers. I am going to try and focus on the happy moments, but it's still hard. Hopefully, none of you will ever walk in our shoes. If you haven't, you truly have no idea what kind of pain this is. I know we will never get over it. I have heard from people who have lost kids 30 years ago, and the pain might lessen some, but it's always there. I guess that I have something to look forward to. I know that Yossi will be there waiting for me when I leave this world behind. I can't wait to find out WHY, and to finally get my hug and hear those precious words "I love you" again. Until then, I will just keep looking at those videos and trying hard to hear it in my other kids voices and feel it in their hugs.
Take me back to Yossi's (z"l) main page.