I am sorry that it has taken me so long to update the site. Sometimes there just isn’t the energy needed to do it. On top of that, we lost power last week for a day, so I had no computer access. (Lovely VA still can’t cope with a rain storm. We lose power all the time for the silliest reasons.)
Last Saturday afternoon we had an incident with Shauly. Marvin, my father-in-law brought my kids home from shul. He told me that Shauly had a little accident; he cut his head, and it looked pretty deep. 2 people in shul said it looked like he needed stitches, and one person said he didn’t (all people with medical backgrounds). I didn’t know what to do. I thought he probably should be looked at by the doctor. I wasn’t sure if our doctors’ office was still open. So I asked my next door neighbor to call. My neighbor was happy to do it. When the doctor on call called back, she told me to take him to the ER since the office was indeed closed. I was trying to decide if I should drive him when it hit me – I had asked this shailah (question) back at Rosh Hashanah! My best friend’s son had cut his head open, and she was told that she shouldn’t be mechalil yom tov (violate the holiday) to take him to the ER. She cleaned the wound and dressed it herself. I was very upset with her, and told her that she should have taken her son. Just to be sure, I asked my rabbi what I should do if this ever happened to us. I was told to definitely take the child to the hospital. Well, here I was. So my neighbor drove us to the ER, and it turns out that Shauly needed two staples!
This past weekend our family attended a bereavement retreat sponsored by Chai Lifeline. Once again, Chai Lifeline has outdone itself. Whatever they do, they do it with grace and eloquence. The retreat was at the camp grounds. 15 families attended. (The sessions had the men and women divided for most of the time, so I am writing from MY perspective.) In our woman’s group, 2 women had lost their only child. A few women had lost their oldest child, like us. A few women had lost their youngest child. (One woman was a mother of 15 kids!) Some of those were just babies. A few had lost the middle child. Some lost their child to cancer or a similar disease; one woman’s child died suddenly. A bunch of the women were ultra-orthodox. A bunch of the women were more modern. A few of the women were not religious at all. What brought us together? Every family had lost a child. We all had that in common. It created an instant atmosphere of trust and love. It was an opportunity for us to speak about our children. We spoke of how they had died, and how much we miss them. We spoke of how our lives had changed, and how we are coping. Many tears were shed, for our own child, as well as for the other children. Friendships were formed with bonds that will probably last a long time. Support was both given and received from all. It seems to me that this is an experience only Chai Lifeline can make!
We got to be with the counselors that were with Yossi this past summer, and see the places where he had such a fabulous time. It was a very hard weekend, full of longing and wonder. Did Yossi sit at this very table? How many times did he walk down this path? But it was also a weekend that helped me so much. I gained so much from the other women in our group. I enjoyed meeting and seeing people who knew Yossi healthy and happy. They had seen Yossi at his very best, and were able to share memories of him with me. Each meal was enhanced with the singing and dancing. The first night, as the men were singing and dancing, I suddenly felt very alone, even through there were over 100 people in the room. I spoke with the mom sitting next to me, and she helped me to feel so much better. (I guess part of it is the fact that Yossi loved to sing and dance; it was so HIM to do that.) I have a very hard time anytime I see people singing or dancing, as it stabs at my heart, reminding me of what is missing from my life.
The kids had a wonderful time. They got to play and they also got to talk. Goldie made a friend with a child who also lost a sibling. They loved being where Yossi loved being. They especially loved the canteen where the kids are able to get free candy and nosh. The camp grounds have bumper boating and paddle boating. They have a minature golf course. There is a library for quieter moments, as well as a game room, computer room, arts and crafts room and wood shop. They also got to go swimming. I don’t think they used the sports facilities at all though. We basically only saw them at meals. The rest of the time they were off doing things with their counselors. Shauly’s counselor was Yossi’s counselor, Ari L.
I brought Yossi’s album with all his camp pictures as well as the Disney pictures. I also brought the scrap book I have compiled of Yossi's work. (One of his things from 2nd grade sort of freaked me out. He is describing himself and the question is “Name one place in the world you would most like to go” and he answered “Olam Habah”(the world to come). I am happy for him that he got his wish, but very sad for me.) For this weekend, Yossi was alive for me. He was there, I could talk freely about him. I wish people would realize that even if I cry when I speak about Yossi, he is still such a part of me and my life. I need to be able to mention Yossi without making those around me uncomfortable. A couple of times, my friends have called me, and I start to cry. They are left speechless. And truthfully, there is NOTHING to say. I have no idea of what I expect from my friends. No one is purposely doing anything. (There is one exception - - my friends Joan and Noa who I am much more comfortable talking about Yossi with.) Anyway, I was much more comfortable speaking about Yossi at Camp Simcha.
The final program was planting a tree in memory of Yossi. Each new family planted an ever-green in memory of their child. The other families were crying as they did it, but for me, I didn’t seem that emotionally attached to it. I don’t know why. Overall, it was an incredible weekend. Thank you Chai Lifeline, Rabbi Scholar, Ellen, Toni, Rivkah, Ari L., Ari D., Abby, Cindy, and everyone who was there for making such a meaningful experience for us. (I know I didn’t name everyone; sorry if your name isn’t mentioned.)
I am also going to start putting together a bereavement part of our site, where I will recommend books to read, sites to visit and more. Just as a reminder, I am trying to start a Jewish online listserv for bereaved (Jewish) parents. To sign up, please visit acor.org (home of the new Bereaved Jewish Parents listserv). Please pass the word along.
A friend of mine is going to make a video for me of all the footage I have of Yossi. The tape needs some music to accompany the video. I have been trying to figure out which songs are the best ones to put on there. I am thinking of Avraham Fried's song Chazak. I would love recommendation for other songs. (I perfer Jewish songs.)
Next week I head up to Washington. I am excited and sad at the same time. I will post more later.
Please continue to give charity and do good needs in memory of Yosef Chaim ben Michoel Dovid HaLevi.
First of all, I am preparing to go to Washington next week. I leave Tuesday night, and come home on Thursday. I am not driving myself, so my friends who have asked for visits are going to be disappointed… Sorry! I had a brain-storm yesterday, and I have been working furiously trying to accomplish it. I thought, wouldn’t it be wonderful if I could take a list of 3000 kids who died to represent the 3000 kids who die from cancer each year. So I sent out messages, and starting writing emails. By today, I have 20 names. Whoo hoo, as Yossi would have said. Today I visited a ton of sites, and got so depressed. Each and every one of those children are special. They all have incredible stories. I sit and cry and cry and cry for each of these families. I know EXACTLY what they are going through. Finally, it reached a point where it’s just too sad. I am now wondering that since people have allowed their children’s names to be put on the internet; can’t I just pull them off each site and make a list? Can’t I say that my list is compiled from names off the internet? I have been writing to each parent to ask for permission. I try to imagine how I would feel, but I feel that everything I put on this site is “public”. Anyone can access what I write. If anyone knows for sure, please let me know as soon as possible. It would make life so much easier to just life names. Also, if you know of any parent who lost a child to cancer, please give me their child’s name, date of birth, date of death, diagnosis, and date of diagnosis. I have been saving them by the day they died, and it’s so sad that I have almost each month filled.
Marvin had an excellent idea, and I am going to just through it out to you. You guys can decide what you want to do with it. He said that the tax rebate that we are all going to start getting is found money. He suggested that since it is extra, why don’t we ask people to donate it to the high school. I think it’s a great idea. So here is what I am asking … If you can, please donate a portion of your tax refund to the high school. I am feeling that I won’t be able to raise the half million needed to name the high school after him. I am thinking of using the money towards the library (since Yossi was a vivacious reader!). The other choice is to establish a fund that could be used for an award. I was thinking that the teachers of the upper school could pick ONE student who showed great effort in their school years. Yossi worked hard even when he was sick. Even in Minnesota he was taking math tests and doing his civics work. (It was ironic to receive a report card from the hospital—who cares now?) I was thinking it would be a nice reward for a child who wouldn’t have normally gotten honored at graduation, even though they tried so hard. The money could then be used for tuition either to a Jewish high school, or for college. These are just thoughts floating around my head. Nothing has been decided. Sure do wish that I knew someone with big bucks that I could ask to make a major donation.
One of the mothers at the retreat lost her 7 year old son, Evan. Goldie was telling me that they had 3 boys and 2 girls, and now they have 2 boys and 2 girls, just like us. Melanie, the mom, has a daughter Goldie’s age. I hope that they will keep up the friendship. Melanie shared a book of poems that she has written. There were a few of them that really reached out and grabbed me. She has allowed me put one on here to share with you.
Today Dr. Grossman called me. I had asked him about mortality statistics for cancer kids. (I don’t want to give wrong information.) He asked me the dreaded question, “How are you doing”, and I gave my typical response, I started to cry. I later told him that he didn’t make me cry, missing Yossi made me cry. He told me that he knows. I found this poem on a site of another bereaved parent, and I am including it here.
"The mention of my child's name
May bring tears to my eyes,
But it never fails to bring
Music to my ears.
If you are really my friend,
Let me hear the beautiful music of his name.
It soothes my broken heart
And sings to my soul."
So once again, don’t feel bad if you are speaking to me, and I start to cry. You didn’t make me cry. The fact that Yossi is no longer hear makes me cry. Sometimes it just hits sooo hard. I will never wash his dirty clothes again. I will never make him tuna that I dreaded making after a while. I can’t hold in my arms, or snuggle with him in bed. I pass his room each night, and feel so empty. There is no body in there to kiss goodnight. Each and every morning, I relive his death again. As I wake up, I remember, Yossi isn’t here. (I know his neshama is here, but as a mom, I want HIM.) As we women said at the retreat, we cry not for our child, we cry for ourselves. A part of us is gone. We are changed, forever.
Looking back at old updates, I saw that all but two of the children I have asked you to pray for over the years are now gone. It’s so sad. Another cyber-friend of mine has been told that the cancer is too aggressive. And you might remember Shane, well, he just had surgery to remove more tumors. (He lost his leg to cancer the week Yossi relapsed.) It seems to me that too many kids are dying. Despite the glowing reports the newspapers print, kids die each and every day. 3000 kids a year averages out to about 8 kids a day. Doesn’t seem like a great number until you think, would I want MY child to be one of those 8? No way. Hug and kiss your kids tonight, in lieu of me hugging and kissing Yossi. (Sruli and I have this game that we play. I kiss him a ton, and he throws the kisses up to Yossi.)
Tomorrow is the last day of school here. I am going to pick up the kids from school, and we are going straight down to Yossi. We all got big rocks from Camp Simcha to leave for Yossi. The kids have been looking forward to this all week. (And I can finally get rid of some dead weight in my car, literally!) Good night!
2 updates in less than 2 days...don't want to spoil anyone. Papa says: In January 2000 we went to the Chai Lifeline “regular” retreat. This is for families with currently sick children or with recovering and well children. I sat in many of the sessions and thought to myself that I really could no longer relate to all the stories and concerns of parents with sick children. Yossi was well and I didn’t want to be around all that. I realized that I had made great strides in getting over all of the traumatic times. And much more importantly, I felt Yossi was past all of that too. So, it was extremely hard to go to the bereavement retreat this past weekend. First of all, it was at the camp, and I had taken Yossi up there last August. Although I was there only a short time, it had memories for me, with Yossi healthy and alive. It is funny, Leah has had a very hard time even walking in to her and the kid’s school since Yossi passed away. It has too many memories for her there. I have had no problem, but this was the opposite, she had no problem and I did.
I really did not know what to expect at the retreat. There were sessions with just the fathers, just the mothers and a couple all together. The men sat around and did a lot of staring at each other or the floor. I thought to myself that the women probably haven’t stopped talking. There were periods of complete silence with us, but also a lot of talking. I could have talked for hours, but I had a hard time, too many sad stories, too much grief. Also, I feel funny bragging about Yossi. These people didn’t know him. The Dr. leading the group said very little. I guess I was expecting to be given topics or asked questions. It was all kind of random, with everyone kind of just throwing out memories or experiences. We were the ones there with the most recent loss and some of the people had suffered their loss up to 5 years ago. A nice guy who lost his son about 4 ½ years ago befriended me. He spoke about feeling so much better than a couple of years ago, but also carried a lot of pain. He tried to be very helpful to me, telling me he went through the same stuff and it will get better. He was very sympathetic and it was nice to be among people going through very similar things. At one point the Dr. spoke about all the different kinds of feelings and reactions people in our situation go through. Every single one was familiar to me. It just made me sadder.
In general, I feel much worse since the weekend than I did before. It may have something to do with the experience, or it may not. It seems as time goes on and it gets more real that I am having a harder and harder time accepting what happened. I know it sounds selfish, but I miss him so much. I just can’t believe what happened. I keep reliving and obsessing on the time in the hospital, especially the last couple of weeks and even more the last 10 days. I think about it all the time and it is too painful. I can’t believe that our whole family’s life is now ruined. How do you get over this? How will it affect the other kids…in the long run?
Guilt is also very hard. I think all the time that maybe I could have done something else or something more or something better. Could the doctors have done better? I try to comfort myself with the fact that even if they could have cured one thing, he had several other life threatening conditions. So, it was a no win situation. I feel lucky that I spent most of the nights with him before he was no longer conscious. Those were such good times, under the circumstances. We talked, played, snuggled in bed together, etc. I had no idea this would be the outcome. He was so good, so brave, and so happy all of the time. All he wanted was to live, probably mostly so that we wouldn’t be so sad. I sometimes feel that he somehow knew that he wasn’t going to be here so long. First, he drew a picture for my father about a year or so before he got sick, and it said to “Please always remember me”. We also found some old school work where he answered the question of where you would most like to go with “the next world”! I am a skeptical person, so these kinds of things and my 4:14 dream don’t convince me 100%. I would like to believe in this, as it would make me feel better, but I need 100% proof before I can. That won’t happen, so I will be left wondering the rest of my life. My life is really just a blur and a haze now. I am blindly going through life, trying very hard to do what I have to. One part of me wants to just give up, as it is so hard. But, somehow I am hanging on.
I don’t know what the future will bring and I really don’t care. I have definitely changed and in some ways for the better. And you can add all the good that has come out of this, and I will agree that there has been a lot. Still, it is of no consolation to me now.
Well, I used my fierce Mommy-boots, and stomped all over Washington. Wednesday morning we gathered a group of about 300 men, women and a couple of children. We represented 41 states and all the blood cancers. They wanted us to take the following messages to Capitol Hill:
1.) Support the bill (HR 1624/ S 913) to force Medicare to cover all oral anticancer drugs.
2.) Support the bill (HR 967) to force third party insurance companies to cover clinical trials.
3.) Encourage the Department of Defense to allocate money for research in the blood cancers.
4.) Remind them of the NCI plan to double funding by 2003
The morning was spent learning about the issues. The entire afternoon was spent going to congressmen and senators. The first one we tried to see was Senator Allen. (Each state saw representatives from their district.) The group had tried unsuccessfully to get us an appointment. We asked to speak with someone. They got us a room and we saw two of his aides. Susan Glass (on the board from our local Leukemia Society) spoke about the grim statistics. (Did you know that blood cancers are the number two cancer killer in this country, second behind lung cancer?) She then introduced a man (I am sorry, I forgot his name) who is a myeloma survivor. He talked about his experiences. Then Susan introduced me. I handed them my gold pins, my Yossi cards (business cards that have his story and web page on it), and my Yossi book. I started telling Yossi’s story. When I got up to the second transplant, I opened the Yossi book up to the picture we took of Yossi close to when he died. I described in great detail how each function in his body shut down, and the complications he had. Then Susan introduced Dan and Mary who talked about the bills we wanted sponsored. Finally, she summed up with more grim statistics. Meanwhile, I added my own special plea – increase funding to the NCI and NIH. Also, push to allocate more money specifically towards childhood cancer research. I showed them my book of names … 467 kids who died from cancer. I emphasized how the parents want their kids remembered, and we don’t want anymore kids dying from cancer. Finally, I reminded them that not only are kids dying from cancer (3000 each year, more than AIDS, diabetes, asthma, and cystic fibrosis combined), but that more and more kids are surviving, and soon we are going to have to deal with complications from their treatment. When we left, Susan and Mary patted me on the back. They told me that the boys (they can’t have been more than 22 years old) had looks of horror on their faces when they saw the picture of Yossi. I wanted people to see what cancer truly does to our children, so I accomplished what I set out to do. Our other two meetings followed the same pattern. The only difference is that the second meeting was with Congressman Cantor. His nephew is Yossi’s best friend, Yonaton. When I was talking to Eric, I broke down and started crying, and had a hard time stopping. Afterwards, Mary told me that was because Eric was a friend and he cared. He made sure his staffer had the notes to look into the bills. I really pushed very strongly for increased funding and more research. Eric’s visit was so successful. Finally, we met with Senator Warner’s aide. He basically blew us off, not offering anything. I feel that part of this was because we were forced to meet outside on the steps because we had a larger group. It was hard to be intimate in that setting. I did get my points across. I had also seen Congresswoman Debra Pryce. I gave her one of the copies of my list of names, and asked that those kids please be remembered. The highlight of the days was the senate hearing on Thursday. We arrived at the building to find a very long of people trying to get in to the hearing. They tried very hard to accommodate us all. I didn’t get in until after it started. After a little while, the chair of the committee said there was space up front. As I started walking up front, he said there were chairs on the podium. Sooooo, I went right up to the podium where all the action was taking place. I sat next to the senator from Texas, Senator Hutchinson (sp?). An interesting testimony was from Dr. Kantarjian from MD Anderson. He said that he thinks there will be a CURE for Leukemia in the next 5 - 10 years. I hope he is right. He didn't say which leukemia would be cured. He said that this will be possible with funding from both the NCI and NIH! (In my opinion, while funds from the public sector help, we need to push our representatives to give more money.) The best part was where Geraldine Ferraro spoke. MSNBC video coverage Everyone had a time limit of 4 minutes. She was allowed to speak as long as she wanted. She spoke very well about her experience as a myeloma patient. She got a very loud applause when she was done. The only bad point was that there were only survivors who testified. No one was there to represent the victims of cancers, their families, etc. After it was over, I was looking for Ms. Ferraro. I couldn’t find her, and we got ready to leave. I found out that there were some copies of the testimonies for us to take. So I went back. It was then that I realized that Ms. Ferraro was going to be leaving through the back door. I ran around to the back door, and snuck in. I spoke to her for a little while, gave her a Yossi book, and told her about all the kids who die from cancer. I told her that we as parents don’t want our kids forgotten. She hugged me and told me that is why she said, “When I was diagnosed I said ‘Thank G-d it was me and not my kids’”. I told her we said the same thing – “Why was it Yossi and not one of us?” I gave her my Yossi book. Overall, I feel like I left my mark on Capitol Hill!
I found it really easy to speak with my representatives. If you want to speak to yours, you should be able to call their local office, and get in. Also, they are changing over to look at email as regular mail. In my opinion, it's important that we tell them what we want! One of my cyber-friends, Beth McQuin is trying to raise money for childhood cancer research. You can read about her journey here --
Have a good weekend!
Well, this is strange ... two updates in one day. The reason for this one is very heartwarming. I got a call from David Baldacci's office. Mr. Baldacci would like to dedicate his next book to Yossi in his memory, is that OK? I started crying. He is such a wonderful man. You can read about his book that is going to come out in November here. Last Man Standing by David Baldacci You can learn more about Mr. Baldacci at his site, David-Baldacci.com. I will also scan the picture I took of the two of them together as soon as I finish cooking for Shabbos.
The last few days have been very hard for me. I don’t know why, but I have been missing Yossi (A”H) even more, if that is at all possible. Part of it might have to do with all the kids home. I tell them things, and they ignore me. When Yossi was here, he used to help me. I am not saying that I need a child to help me with my other kids, but he was the type of kid who would say, “Come on guys, let’s be good”, or something to that affect. Ari, Yossi’s counselor from Camp Simcha commented it on it. When Yossi called home, be it from camp or from Disney, if he heard the kids in the background weren’t listening, he asked to speak with them. He told them to behave and he would bring them treats home. Yossi was such a good boy. It’s not just because he is my son, or he is gone. He truly was a good boy. He always (well, almost always) strived to do his best. Another counselor from Camp Simcha said (on the video they sent down for his shloshim) that he took worksheets with him down to Disney. Yossi did school work. Oiy, does my heart ache. I want him back so bad. Sruli asked me out of the blue yesterday, “Why did Yossi have to die?”
Three of Yossi’s friends came over today to help me with his legos. We got one model done. I realized that I think I might have chucked the instructions to some of his models. The sad part is that they are older models and I have no idea where to even begin to look for instructions. So we are going to plow our way through them, and see how many we can get done.
On Shabbos I gave a shir (class) on Perkai Avos (Ethics of our Fathers). All this time I have been searching for certain answers to questions, and the answers have been right in front of me all along. I truly believe in the world to come. This chapter I taught (chapter 4) speaks a lot about how this world is an anti-chamber for the next world. It also speaks of the great rewards waiting. Yossi is so lucky. It’s us left behind who carry the burden. Anyways, I was just really missing him, and his super great smile.
Horizon's published another one of my articles, and some really beautiful pictures of Yossi. If you live near a Jewish bookstore, pick up copy number 29. I think that I also have an article coming out in the next issue also, but they are a quarterly magazine, so it won't be out until the fall.
Finally, the VA chapter of the Leukemia and Lymphoma Society had their regatta this weekend. One of Ilene's friends sailed in Yossi's memory. Thank you so much for thinking of him!
I added some new pictures. You will find links to the pages down below. Just look for his preschool picture. There are pictures from Camp Simcha and from our photo album.
I found a site that has directions to lego sets, so now I am set. I found the first set that Yossi got. (And directions to Goldie's first set.) I have also managed to finish building one of the hardest sets all by myself. (It's a haunted castle.) Yossi, don't you want to come back and play legos with me?) I have a lot to do to prepare the kids to go to MN. (Did I tell you that Shauly and Goldie are going to MN for a month? They are very excited, as well as a little nervous at being away from home for so long.) So, I am not sure how much time I am going to have to do all the things I want to do. Goldie wants to make a Yossi book to take with her. That is why I was working on the pictures for so long. I am looking into how to save the file as a PDF file or to make it so that people can download it with Acrobat. Again, if you know how, suggestions and help always welcomed! Good night!
Salmon fighting the current go get upstream. Wearing sunglasses at night. A beautiful vase with a big crack or chip in it. Trying to fill the Grand Canyon with pebbles. Trying to feel full when all you have is water. Empty. Black. Void. Bittersweet. Bottomless pit. Each and every day, I have the pleasure of reliving the fact that where there was once a brilliant light there is darkness. Even though I have the other kids, it’s not the same thing. Something is missing. I feel it acutely with each and every breath I take. Inside, there is a void, a hole. I try to fill it, be it with shoes or clothes or books or anything, but it just gets emptier. There is always the fact that Yossi (A”H) isn’t here. It’s like a chip on my shoulder. I carry it wherever I go and with whatever I do. Whether I am reading a story with the other kids or doing laundry (once in a blue moon) or trying to make a dinner. It’s like an annoying mosquito that won’t stop pestering me. It’s now a part of my life, my pain, my longing. One more hug, one more kiss. But it would never be enough, because then I would want one more and one more and one more. I look at the pictures, and feel pleasure at knowing how happy he was. But then I feel pain, knowing I will never see him again. I will never know who he is, what he has become. I go through the day, I see people. Do they see the hurt in my eyes? Can they feel the intense anguish I feel? I don’t know. Some days life kicks me in the gut and all of a sudden, the thought occurs … “I AM NEVER GOING TO SEE HIM AGAIN.” (I am referring to this world, not the next.) I miss telling him to clean his room. It sits there spotless day in and day out. His clothes are all neatly folded in his drawers. I see a shirt or shorts at the store, knowing full well he would like it, and how handsome he would look in it, but I don’t buy it. I won’t see him in it. The days are endless. The hours drag by, and yet at night sleep eludes me. Bad days and not so bad days. My life.
Yossi's friend Shlomie had his bar mitzvah last week. Shlomie dedicated the whole bar mitzvah to Yossi. Thank you Shlomie for remembering him.
Take me back to Yossi's main page