This update is being written by Leah.
Some bad news to start with Ö A week before Purim, Eli Dorfman from MN passed away. I was asked by a friend there for some doís and doníts that have experienced. I put this question to my friends on JP Net and this is what we came up with. Please realize that itís not totally original. Itís not a complete list. Itís just what we brainstormed so far.
1. Do NOT ask "How are you?" It is not a casual conversation opener to us. Rather, it is a reminder that we are struggling through each day. We will never be "Fine" in the way you mean it. We may be coping, but we will never be whole.
2. Do not tell us it will get better with time. Time has a different dimension for us - a reminder that we may live for a long time without hearing our child's voice and feeling their hugs and kisses.
3. Do not give the families pat answers trying to get them to feel better. It takes years to adjust to this new life.
4. Do talk about our child. We love to hear their names mentioned and stories shared. While our children are no longer physically close, they are forever in our hearts and forever a part of our family. Not mentioning them does not diminish our pain, it only adds to it
5. Do call just to say hello, I have been thinking of you. This is a lonely journey that takes the rest of our lives.
6. Do not tell bereaved parents that you know how they feel - if you are not one of them, you really don't know. When we hear that from others who are not bereaved, it tends to make us feel lonelier.
7. Do not tell us, we look or sound better - and therefore assume that we are better. The pain is still there - we are just learning to mask it better. In reality, we are still emotionally fragile. There is no timeframe to our grief since there our love for our children is endless.
8. Do not say, ďYou are strong.Ē We don't feel that way. We are just coping as best we can.
9. Do not say "I can't imagine what you are going through." We hear this a lot and though it is a true statement, in reality it is a reminder that you have your child/children and we don't.
10. Do just continue to show you care. A card, phone call, etc. is much appreciated long after most people go back to their lives. Our lives have stopped for us. If you don't know what to say, just say "I care about you. I will be here for you."
Each place setting had a memory book. The book contained letters and pictures about Yossi, plus an essay he had written about Camp Simcha. There was also a letter with an envelope for a donation to the boys high school. I got official word that the library will definitely be named after Yossi. I was asked to fulfill the commitment I made to raise the money. I still need to raise an additional fourteen thousand dollars, but it all seems within reach now. The center pieces were the childhood cancer awareness bears on a little candle holder. Around the bears were pushkas with Yossi's pictures on it. Also, we had tehillim printed with ďin memory of YossiĒ on it. My friends from NY brought down asher yatzar cards with the same thing. (It's the bracha you say on going to the bathroom.) I (Mommy) was a wreck by the time I arrived. I kept crying and finally one of my close friends pulled me aside and told me not to greet people. She said to sit quietly and she stayed with me until it was time to begin.
First the rabbi explained why we light the yartzeit candle, and Goldie came and did it. Then the rabbi gave a dívar Torah (words of Torah). He focused on Purim and how you donít send mishloach manot to the grieving family, but after a year the family is supposed to rejoin the community. We do have to admit that both of us were terribly upset over these words. This was not what we had asked people to do. The focus was supposed to be Yossi. We wanted to hear memories of Yossi. We certainly didnít want to hear how we are grieving wrong. It caused us a great deal of pain. We donít think itís intentional. We understand that everyone else is tired of hearing that we will never get over this, a part of us has died. We continue to find it totally shocking that people who have not gone through this will continue to offer advice and tell us we are wrong. NOT ONE LAY PERSON would walk into a surgery room and tell a brain surgeon how to do his job. Why do people feel it necessary to criticize us? We donít understand why people havenít figured out that we are only getting our advice from other bereaved parents. We are speaking to others who are bereaved and those who work with the bereaved. We know that people care and worry, but it is coming across as a hope that we get over this as quickly as we can so all of you can continue on your lives without feeling guilty.
I, Mommy, sort of acted as MC for the evening. I explained why I choose to have this dinner. (To surround ourselves with friends so we wouldn't be alone on his yartzeit, and so that everyone would remember Yossi.) Shauly and Chanie read what they had written in the memory books. Then some of his classmates spoke, and it was really beautiful. They spoke about when he was younger, and one of his friends shared the memories of Yossi playing football with the kids. One of the girls spoke, and she broke down and had to sit down. Next was Dr. Grossman who is very nice. We were very happy he came. He spoke about how privileged he was to have worked with our family. Then I had Yossi's math tutor get up. Mr. Steiber was so emotional. He started crying. He explained how his little 3 yr old grandson died 5 years ago, and asked if anything good comes out of something bad. He went on to explain how Ilene (M-I-L) was talking about Yossi who was just dx. (He was referring to 1997.) He offered to tutor Yossi. He said that Yossi taught him more than he taught Yoss. Again, he was crying. He said that Yes, something good did come out of something bad. Next Yossi's counselor from Camp Simcha, Ari Lamet came up. He told some stories about Yossi at camp. Then one of Yossi's rebbes came up. He only taught Yossi for a short time, but it was so nice what he said. He compared Yossi to Moshe and the light that radiated from Moshe's face after he got the Ten Commandments. It's too long to go into details, but it was very moving. At this point, I got up and shared a few of my memories ... the one where I found out I was pregnant with Yossi, the one when Yossi and Menachem (his friend) pulled the wall paper off his walls in his bedroom. Then I mentioned MN, and how the doctors were giving up hope and I asked Noa (my friend) to come out and be with us. I told about how much it meant to us, and then she came up to speak. Noa spoke about how she wanted to write an article about her experience with Yossi's last week of life. She spoke about how the community here would call and check; and about how the community there adopted us; about the nurse who worked so many extra hours to be with us in the end. She spoke about us and what wonderful parents we were to Yoss. She was crying at the end. When she went back to her seat, I hugged her, since I was also crying. It's a special bond we share, the last few moments of my sonís life. Then Marvin, aka Gramps, spoke. I had introduced Marvin with the fact that Yossi and Marvin had a special bond. I mentioned Yossi was named after his father, and how Marvin held him for his bris. And not only that, but tonight wasn't just Yossi's yartzeit, but also Marvin's mothers yartzeit. Marvin spoke about how they miss Yossi and visit him and speak with him and hug his clothes and cry. Then I asked if anyone else wants to speak. Pete, the postman (Yes, you read that right! I invited my in-laws mail man) wanted to come up. He spoke about how he first met Yossi, and how he wore the gold pin everyday. He told a story about how he lost his pin and it miraculous turned up again. Then Yossiís other tutor spoke about how Yossi affected her daughters life so profoundly. Layah mentioned her daughter kept Shabbos because of him, and she is now in Israel. At this point, we were done with the speakers.
Then we served desert and it was over. My friends from NY who had come all the way down came over to sit with us. One friend, Tzipporah, who lost her mom 4 (?) years ago mentioned that donít listen to the rabbi Ö You get over it in your own time frame. Then Ora told me that when the Lubavitcher Rebbe lost his wife, he was never the same again. It is so beautiful to hear from such close friends who are so accepting of us and our pain. When everyone was leaving, they all told me how beautiful and memorable it was. There were a lot of people crying during the speeches. I feel that I really did justice to Yossi's memory. Yes, it doesn't in any way shape or form make up for what happened. It doesn't make it easier. It was terribly hard. But it was good to see so many people missing Yossi. We felt so not alone, if that makes sense. I go through my days in this daze, just wanted to shout "I STILL MISS HIM". Tonight, I wasn't alone. Everyone was feeling a small part of our pain.
Thursday, the actual day of the yartzeit, I took Yossiís class down the hospital and then to the cemetery. We gave out gift bags to the kids. One mom came up to me and let me know how much her son enjoyed the toy he got. I chatted with the nurses. Then we (me, Leah, and all the kids) all sat around and talked about Yossi. It was actually very excited to hear these kids open up and tell all these wonderful little tidbits I had never heard before. I have to say, the day was not awful. I made it through, and it was so nice to surround myself with those who also loved and cared about him. At the cemetery, the kids left rocks that they had written messages to Yossi. (We made them at school before we left.) On our way back to school, we stopped at 7-11 for slurpees. Yossi used to always ask for slurpees on his way home from clinic or a hospital stay. Itw as a perfect way to end the day.
So, all that said, I sit and reflect on the year. Has the pain lessened? No. Have I learned to hide it better? Yes, sort of. It still bubbles to the surface now and then. Am I at peace with what happened? NO way. Am I over it and ready to resume my life? (Huh? Oh, I get it. The calendar says I can stop being sad now. Hip Hip Hooray for the calendar!) We have continued to go on. Both of us get up each day and do our jobs. Our laundry gets done, the food gets cooked, the kids are taken care of. Are we happy? Do we find joy in our lives. There is some small joys. But there is ALWAYS some small blackness to all that we do. Today we went to the mall as a family. And yet, I wanted to put a sign on us that there is one kid missing. You donít see it on the outside, but it is there. It is our companion for life. Everything will always be overshadowed by this missing and longing. How could it not? Yossi was a part of us. He was our pride and joy. He was more than a son to both of us. He was our friend. We have lost more than a son. We each lost a small part of our heart. Michoel and I are lucky that we have each other, as well as our other kids. But there is nothing in this world that will make up for what has happened. We canít think of anything that will be good enough to take away the pain and sadness we feel.
Hey Yoss (A"H), I love you and miss you more than anything in the whole world.
A long update being written by Leah to catch up on all the news you all have missed.
First of all, a very big yasher koach to Shira Mindel Beleck on raising $2,100 for the boysí high school. Shira did the raffle as her bas mitzvah project, and basically organized the whole project herself. Thank you so much for all your hard work and effort, and to all the people who helped to support the project.
Another friend of mine, Rachel N. also raised some money from her co-workers. Rachel and I were friends from back in high school. We hadnít spoken to each other in almost 20 years, and yet she felt so moved by my pain to help me with my goal. Thanks, Rachel, it means a lot to me.
For Pesach (Passover), we went to St. Louis to be with some friends of ours, the Glesteins. They graciously took us into their house for two weeks. Our girls are close in age, and got a long nicely. Not only did the Glesteins make us feel completely at home, but they also took upon themselves our stringencies for Pesach. I had to take down our hagadahs (Passover prayer book?) before Pesach, and was a basket case the whole day. There is something about the holidays that make the pain even worse. Then I got very caught in the packing and organizing for the trip. Once we got there, and it was the day of Pesach, I once again got very sad. It is very hard to face the holiday without Yossi. He loved Pesach. Yossi (AĒH) was 4 or 5 when he begged us to let him peel carrots. The last year he was alive, he asked me if he could line the counters. I let him do it, and he did a nice job. While it was very good not to be home in the sense of seeing Yossiís empty chair, it was still very hard without him. Once again, a very big thank you to the Glesteins for all their hospitality and helping us through this Yom Tov.
Yossiís friends did the most amazing thing. They had a ďkids only ShabbosĒ the Shabbos after Pesach. We werenít back yet, but I have heard from several people that it was truly beautiful. They did it in memory of Yossi, as it was his bar mitzvah portion week. The boys broke up the davening (prayers). Some of them led davening. They did the whole layning (Torah reading) and haf-torah. The rabbi spoke beautifully (I hear) about Yossi and how brave he was. At the end, all of his friends got up on the bima for the final prayer. What is the most special about the whole Shabbos is the boys came up with the whole idea themselves. I know that it has been said to me so many times that no one is going to forget Yossi. I had a very hard time believing that. Now I see how deeply affect the boys were by Yossi. They are (were?) a very special group of boys. I can relate with each boy individually, but put them together in a group, and I am heartbroken. While I probably would have gotten a lot of nachas (joy) from seeing the boys on Shabbos, I probably would have had a big pain in my heart as well. On this past Shabbos I saw his 3 closest friends together, and felt that he should have been there with him.
Yossiís Hebrew birthday was the day after we came home from St. Louis. I went to the cemetery with the kids and Menachem, one of Yossiís friends. The kids were not behaving, so we really didnít stay a long time. (Please donít forget that if you are still saying tehillim for Yossiís neshama, he is now kípiltal tes-vov [psalm #15].) I thought that I would be upset that day, so I told the school I might not be in. As it was, I was fine, and ended up going into work. Surprise! The super hard day was today! Today is Yossiís 14th birthday. To me, it is an extra special birthday Ö to turn your birthday number on the day (14 on the 14th). I have just been real sad all day. On top of that, it got real hot here. I brought down the summer clothes for Sruli. I put away all the winter clothes that were too small. Then I started pulling out the summer clothes. I got terribly sad when I got to the outfits that were Yossiís. I know if he were here he would have said, ďOH, I remember that outfit!Ē or been excited about the fireman shirt he loved so much. Instead, I had empty memories once again. I called Michoel into the room and just sat and cried and cried.
The next event that is coming up for me to dread is my classís siddur party. Chanie is in my class. Each childís family is called up to present the siddur (prayer book) to the child. Once again, the presence of Yossiís absence will be felt. That is the best way to describe it. Whenever we are all together as a family, I feel the loss more intensely. Another bereaved mom told me a conversation she had with a friend of hers before Pesach. She had mentioned that one of her sons was going to her sisterís house for the whole week. She was happy, because she could pretend like that son was with her dead son. I know exactly what she means. When one of my living kids is missing from my Shabbos table, it feels more right then when all the kids are there. I think itís a mind game we play with ourselves.
On a brighter side, Goldie and I started working on her Bas Mitzvah preparations. Itís not going to be a glorified bar mitzvah. She will have a small get together with family and female friends. I am not sure of the date yet, but I am glad I have that to work on. I am also thinking of taking a trip up to NY to see my friends. I usually go in the summer, but I am thinking of going closer to Shavuous this time. For all my NY friends, I will let you all know for sure when I finalize my plans.
One final note. Michoel and I watched a movie that really moved us a lot. So much so we rented it a second time. It's called Donnie Darko. They have a great site. The last song in the movie really got us. It's called Mad World, and although it's so sad, it really expresses us. If you watch videos, this is a real watcher. It's rated R, and with good reason. This is not one to watch with children around. It is not the run of the mill movie. It was billed as American Beauty meets the Twilight Zone. If you do watch it, hope you enjoy it as much as we did! Good night.
Leah here Ö. Well, I need to sit down and take a little break from my cooking marathon. I decided itís time to finally update Yossiís page.
Back in the end of April, I had the Siddur party for Chanieís class. I was dreading it for the same reason I dread anything that revolves around the whole family. I feel the loss even more when surrounded by family. I was a complete basket case the whole day. It was basically a crying fest for me. I am thankful I have such a good friend at school that can just hug me and let me cry. (And also that I have the best aide in the whole entire world who takes over when I can not function!) My dear friend is facing her own challenges now that I will get to later on. At the party itself, I was basically OK. I did cry when I was speaking to my friendís daughter. The hardest part was when all of the family comes up and hands Chanie her siddur. I kept thinking, ďThis is not my whole familyĒ. I didnít realize it until the next day, but Goldie was sitting and taking a picture. I was so happy when I realized that! Now I had two kids missing from the picture, and I could ďpretendĒ that I still have a normal situation.
Now for my friend. Her daughter was dx with a brain tumor (benign thankfully!) back at Thanksgiving. They drained it and that was supposed to be that. However, the daughter continued to have headaches and vision problems. They were getting the run-around from the doctors until right after Pesach. It turns out the tumor did refill. On Lag BíOmer the family went to a different hospital to have the tumor removed. The daughter has been having a terrible time. At first she was blind, and she didnít regain her vision when she should have. Then this past weekend she developed meningitis. Things got pretty hairy, but now it seems as if she has turned around. If you would like to daven for her, her name is Chana Malka bas Perel. I have been having a very hard dealing with all of this, as it brings back so many of the hard memories for me. I just wish that no parent would have to see their child suffer. It has got to the hardest thing to sit helplessly by and watch.
Then some more bad news. Years ago I asked you all to daven for Chezkiyahu Yoel ben Zelda Yitta. He was dx with Hodgkinís back in March í97. He has been basically on treatment the whole time. His mom called me last week that he has relapsed yet again. It is scary, as they are starting to run out of options. There are a few more things out there to try, but he is in a lot of pain. Please pray for his recovery!
I am getting very excited about the end of school coming up. I am looking forward to next year where I will get to be a stay at home mom again. I havenít done it since Yossi was a baby. Next up on the agenda is Goldieís bas mitzvah. I am doing a female only brunch for her friends (and a few of mine). You have to love the computer. I printed everything up and they look so professional. Now I have to work on scanning her pictures so that I can make a collage for her.
Chanie is keeping nice and busy with all kinds of interesting problems. First we couldnít get her eczema to go away. Now that itís almost away, she has gotten into poison ivy. Itís all over her face. She also had this tooth in the front that was sticking out, and refused to fall out. Finally, she pulled it out herself. She was so proud of herself.
Shauly is feeling lost, in my opinion. He has been having a hard time lately. He is the one I worry about he most. He went from being the younger brother with someone to look up to to being the older brother who has someone looking up to him. It has to be difficult.
And Sruli, well, he is still Sruli. I am trying to wean him off TV, and limiting his viewing to one video a day. Itís not really working. He is probably down to one in the morning and one at night. He is into the computer now. He loves to play the games we have. He has gotten good at closing out the games properly, and he even knows how to turn on the computer himself.
Michoel is the same. He is in deep pain still. I feel sort of jealous of him, as he has a better memory than I do. He called the house, and Shauly answered the phone. Michoel later told me that Shauly sounded exactly like Yossi. It made me so sad, since I donít remember Yossiís voice in my head. I do on video, but itís not in my headís tape recorder. I just donít see it. I see Yossi in Shauly when Shauly is wearing Yossiís clothes. But that is about it.
Speaking of the clothes Ö Itís a little freaky, since Shauly is now the age Yossi was when he was first dx. I am not nervous about it, but it is just very weird. And Goldie has almost caught up to Yossi in age. Itís like, time continues to march forward, and Yossi is stuck in the past. Itís so painful to see him like that. I canít imagine what he would look like. I try to picture him with his friends getting ready for graduation, and it breaks my heart. He was so looking forward to this year. He was robbed of his future. And anyone who thinks that it gets better with time is an absolute fool. Time does not heal this wound. The only thing time does is give us the coping skills to hide our pain. I recently heard of a 90 year old woman whose kid died 60 years before Ö She thought of her child everyday I was told. How could you not? Yossi is around me all the time. When I go places, memories of him pop into my head, while the other kidsí memories are buried deep inside. I am guessing itís because he is not here making new memories. Some days I just want a sign that says ďI am still in painĒ. I hate when I go out and people just assume I am OK because I am dressed nicely. I almost feel like I canít go to a joyous occasion, since people will use that as a proof that I am fine. (That and the fact I hate being in gatherings Ö around a lot of people.) Everyone is so happy, and deep inside I am so miserable. No matter where I am or what I am doing, there is a black cloud over me. Does this mean I donít laugh or do enjoyable things? No, it doesnít. It just means that instead of a cloud having a silver lining my life has a black mark on it. I am guessing now that I am describing a world that only another bereaved parent will recognize, and those of you lucky enough to be living in the other world will have no idea what I am talking about. OH well, such is my life! I am saying good night, and wish you all a good Yom Tov!
Ps-- I haven't gotten a total yet on how much money has come in for the library. If you would like to make a donation in memory of Yossi's graduation that he is missing, please feel free to do so. I am guessing I still have about 12K to raise. I would like to concentrate on it more after I finish teaching and have some more time on my hands.
People automatically assume that since it has been over a year, we are getting better and moving on. Well, I can only tell you itís getting a lot worse for both me and Michoel. We have both changed. Michoel has become a lot more laid back. Things that used to bother him no longer bother him. He says, ďWhat could be worse than losing Yossi?Ē Whereas, where things used to roll off my back, they drive me nuts now. Canít find the top to a pot? I freak out. The guy in front of me is too slow? It drives me bonkers. Every little thing is pushing me over the edge and I feel like I am ready to beat up the next person who rubs me the wrong way. I tried therapy not once, but three different times. The first therapist insisted that I have to be mad at G-d, and she would help me through it. Wrong. I am not mad at Him. The next one was wonderful, but she was let go from where she was working, and that was the end of that. Finally, I thought I found a great therapist. She is a bereaved mom herself. But the last two sessions I went to she kept insisting that I was addicted to the computer, and I will never overcome my grief until I deal with this. Apparently, my addiction is the root of all my problems. I got very annoyed with that. That is not the problem. I am furious with the world for not understanding my pain. I am trying to figure out how to cope with this horrific pain that is welling up inside of me. I canít deal with life, and need some help. The computer is a way for me to relax and take my mind off things. But it gets shut off on Shabbos. No desire. I had no desire to use it in St. Louis. And for the last few days I have been getting back into sewing and the computer is put on the back burner. SoooÖ that leaves me high and dry again.
Some of my friends have asked me if I ever feel happy. Yes, I do. But what they donít get is that the pain comes back. It never fully leaves. When the happy moments pass, the pain returns. It takes so little to trigger the pain, too. I see an invitation to the 8th grade graduation, and boom! I am in a horrible mood. I see his friends, and think he should be with them. OH, and then there are the people who want me to feel happy because Yossi would have wanted me to be happy. Well, if Yossi were here, I would be. I have found (years and years ago) that true happiness has to come from within a person. My question is, how do you obtain that happiness again when you are so full of bitterness and sadness????
Yeah, I know this is depressing. But the only ones who understand where I am at are my bereaved friends. Even the ones who are farther out know what the pain is. The illusion the rest of the world has is that it will get better. But from what I have seen, not only in myself, but in my other bereaved friends, is that it doesnít get better. It just stays there. The time between the anguish maybe gets longer, but the pain is always there. You never forget. And nothing will take it off your mind for a very long time.
Finally, I have no idea what geocities is doing to Yossiís page. Sometimes it works, sometimes it doesnít. I think it has to do with the amount of traffic it is still getting. Also, some creep keeps leaving advertisements in Yossiís guest book. I changed the settings so that we have to approve all entries before people sign in. I truly do not understand what would possess someone to do such a thing on this type of page.
It's a horrible terrible day for me, Leah. Tonight is graduation, and obviously Yossi isn't going to make it. This isn't exactly what I would have said, but it's close ... Heavenly Lights After you read the poem, Yossi's star is on page 5. You can click to link at the bottom of the page, and his is a green star (his favorite color).
Yossi, I miss you so much!!!
Finally, there was a superb article in the wall street journal last week. There is a follow up in today's issue. I have both of them if you are not a subscriber. Just email me and I will forward them onto you.
Ok, this is M now...Leah won't say it, but I will. She had been very upset yesterday because she felt that the school would make no official mention of Yossi at graduation. And guess what, she was right! That really bothers her a lot. To me, it really doesn't matter. It won't bring him back if they mention him. It turns out that some of his classmates mentioned him in their speeches, but that is all. In every other regard, it was as if he never existed there at school. Hey, if people want to be so insensitive and uncaring and are afraid to mention death, then who cares?! People here were so great to us while Yossi was sick. Now, it is a different story. We are basically treated as outcasts now. (Let me just say, that this is a generalization. Not everyone is like this) But that is ok, too, as that is how we feel. We are outcasts, we are different, we are sad. We won't ever get over it, how can we? Yossi will never be here with us again. Our feelings are with us every second of every day...night and day, actually. We got married and had our first child and then he died at age 12. That is not how it is supposed to be. If it hasn't happened to you, then don't think that you know how we feel, or tell us how we should feel now! Add to that all his suffering and time in the hospital and his horrendous final weeks and those experiences will dominate the rest of our lives. Even expecting a new baby can't make up for this. So, in conclusion, Leah is upset and disappointed that Yossi was ignored. It would have given her some comfort for Yossi to have been remembered in some small way. But, obviously that was too uncomfortable for those involved. If they want to know uncomfortable, they should try our daily existence for 5 minutes.
This little message was left to me on a Jewish Parenting board that I hang around on. I thought that those of you who still check in here would find it interesting. I am sorry that I do know know the name of the woman who left it, nor do I know what book she is refering to. ~ Leah
"I read in a book by Anne Tyler a quote that said something like, 'People imagine that missing a loved one works kind of like missing cigarettes. The first day is really hard but the next day is less hard and so forth, easier and easier the longer you go on. But instead it's like missing water. Every day, you notice the person's absence more.' "
First I would like to share a letter I got in response to my last post:
The quote you mention on your Web site is from Anne Tyler's book, "Back When We Were Grownups".
Cigarettes are bad for your health. Yossi, and his memory, like water, sustains life.
Bob Kusnetz Also, if you want to see pictures and stuff from Goldie's Bas Mitzvah, I finally got them up at picture trail. (Go to her link at the bottom of this page, just before the counter.) I moved Chanie's album to her own page, and Sruli's is also on his own page. Finally, if you want to see how big I am getting, you can find the link on MY page. (Yes, we are expecting in the beginning of September, just in time for Rosh Hashanah. That was the main reason I decided NOT to go back to work this coming year. I am going to be a SAHM.)
Just want to say that two years ago this time, I was in NY with Yossi and the boys after spending a super time in Denver with Neal Price (Yossi's donor) and his wife Michelle. Three years ago this time, Yossi was inbetween his shingles. And FOUR years ago this time I was having a super time with Yossi. He was living with my in-laws, and I was expecting Sruli that summer. The other kids used to go to camp, and I would go over and stay with Yossi. It was really super. We used to play Starship Titanic on his computer, or just hang out.
I have mentioned this boy several times, Shane, son of Sharon. Shane had his leg amputated the day Yossi relapsed. Sharon and I felt this bond since we went through a terrible time together. Shane has relapsed several times since, but always managed to pull through. A couple of weeks ago, Shane went to MSK for a new treatment. He had some complications and now he is in bone marrow failure. (His marrow is not making any cells.) Shane is not expected to make it much longer. And then Matthew, a boy we visited in St. Louis at Pesach ... Well, he relapsed after his BMT. Matthew is at home, waiting to die ... Of course with all the news we hear about Israel and this whole crazy world, it just makes me wish harder and harder for Moshiach to come and put an end to all this! Enough with the kids suffering and the parents and grandparents suffering. We need Moshiach!
(Papa starts~)It seems that some people can go through a terrible tragedy and retain their faith, even come out stronger than before. Of course, some people donít. When Yossi got sick, I found it hard to conform to all the practices and rituals that I did before. There were several reasons for that. Many times Yossiís care clashed with holidays and other observances. Of course, Yossi came first. Another reason was that with so much to do for Yossi and being forced into difficult and bewildering situations, something had to give, I felt. So, over the years since í97 my level of observance and to some extent, faith, gradually decreased. Then Yossi got better and while my observances may not have increased, my faith held steady.
When Yossi relapsed it all came crashing down, and I was very discouraged with religion. But, as the weeks went by I kept trying. After Yossi died I did what I had to do, said the kaddish for him for 11 months, etc. Well, now that period is over and I have very mixed feelings about religion. I know people who have lost children and their faith remains as strong or stronger than before. I have a theory or 2 about this. What about people who lost a child suddenly? The child goes to school one day and has an accident and doesnít ever return. That is an incomprehensible shock, one that I canít imagine, even after losing Yossi the way we did. Could that shatter a personís faith? Sure, but maybe it goes like this: Nobody prayed for that childís recovery. He or she wasnít sick and didnít suffer for months or years. People around the world as well as the parents didnít pray and fast and give charity for the sake of a recovery. So, you canít really feel that your prayers werenít answered. Sure, you can be angry that such a thing happened and you can feel cheated. But, you canít question the fact that so many people hoped for a recovery and their hopes werenít fulfilled. However, what if for weeks and months people all over the world, of all faiths prayed and hoped for a recovery? What if your entire family was turned inside out for years, the other children suffered, the sick child endured untold pain and misery and disruption of a normal childís life? What if that child recovered once only to cruelly and tragically relapse and subsequently lose his life to a terrible disease? Was all that struggle worth it? It is easy to say, ďat least he had 2 good years in the middleĒ. But, that is very selfish. Did the child feel that way? Well, Yossi was a very good natured person, very appreciative, very full of life and happiness. But, if you really think about it, try to put yourself in his placeÖwas it worth it for him? I donít think it was!
Also, when the child is sick and undergoing treatment, it is easier to retain your faith. You never really believe that the unthinkable could happen, and you surely donít want to do anything to jeopardize a possible recovery. There are people with sick kids who are told that there is nothing else to do. Those children might be seemingly well enough to come home and live out his or her days. I know of such a situation and the family still has a lot of faith. That is also a very difficult situation. We went through something different, as Yossi was not conscious during his last weeks. It would have been impossibly hard to face him during that time, I guess because I am weak. How do you look your child in the eye and tell him he is going to die?? I donít know if it was really better for us and Yossi, but of course, we had no choice. One of the last things Yossi every said was to ask us if he could die from his surgery. We told him no. SoÖwe lied to him, is what it boils down to.
Ok, so this is rambling, but the point I am trying to make is I donít know what the point in religion is anymore. I donít really see how it helps. Sure, you arenít supposed to believe so that you get good things or rewards. But, this is different. All we wanted was for our son to live. Is that so wrong? We werenít praying to win the lotto! It is beyond my control to believe that praying or anything does any good. This comes from being so cruelly rebuffed. Faith is faith, either you have it or you donít, I guess. I understand that it is very comforting to believe that there is a reason for everything, that things are, in the long run, out of your control. So, you can just sort of sit back and feel that everything will work out. If I knew for sure that Yossi was in a better place, that he is not suffering, that he doesnít harbor any bad feelings towards us, and that one day we would be reunited, I would feel a lot better. But, the fact is that nobody knows what happens after you die, where you go, what you do. It all has to be taken on faith, which I cannot do at this time. I donít understand why everything happened, and I am unable to find comfort in any way. All I know is that we put Yossiís decimated body into a cold, muddy hole in the ground.
It doesnít get any easier over time, or at least it hasnít so far. In fact, it gets harder as more and more time goes by without Yossi. How can you get used to him not being here? The longer it gets, the more I miss him.
(Leah replies~)All I can say is that Michoel and I do not see eye to eye on the religion aspect of our mourning. I still believe that Hashem had His reason for what happened. I have no idea what it is, or why Yossi, or me, or any of us are supposed to suffer this loss for the rest of our lives. Michoel is right in the fact that it is getting harder. I continually worry that as time goes by, others will forget him and we will be alone in our mourning. I miss his hugs, his smiles and his laughter. I miss seeing him grow up the way his friends are all growing up. Their voices are all beginning to change. Their bodies are growing taller and filling out. I am stuck with an image of a boy on the verge of growing up. It hurts in a way that only another bereaved parent can understand.
Right now, Michoel is closely following the same saga that a cyber friend is going through with her son. Back in April, when we were in St. Louis, we met face to face with my cyber-friend Debbie and her son Matthew. Matthew was in the hospital for his transplant. In fact, he went home a week after our visit. Tragically, at 66 days post transplant, Matthew relapsed. His end is coming any day now. Last night, on the list serve I am on for parents of kids with cancer, another cyber-friendsí daughter now has mets to the brain. Another boy died last week. Another friend's son is also dying. I donít even want to call my other friend because I just canít face the news. And then every magazine I open is full of the wonderful stories of the kids with cancer. Sweet smiling faces and stupid doctors saying the kid is probably cured when they still have two years of treatment left. The truth is, no one out there wants to face the horrible facts. No one wants to know that more kids a year die from cancer than people did in the world trade center. I guess if all the kids would die on the same day, people might open their eyes a little, buy probably not. Itís just too horrible of a thought, to lose a child. And yet it is a fact of our life. We face it each and every day. We go out with our family, and people see a ďhappyĒ family with 4 kids and expecting another. But no one sees into our hearts. Our lives are forever spoiled by the death of Yossi. Not blaming him or anyone else. But there is always an emptiness, a someone-is-missing feeling. Every happy occasion is tainted. As the kids said the other day, Yossi will never hold this baby, or see this baby. Itís horrible. I have no answers as to how G-d can continue to say NO to all the prayers. But that is how I look at it. I now pray for only one thing. I ask Hashem everyday to please send Moshiach. That is all that I want. If Moshiach comes, everything else will all fall into place. I guess that is how Michoel and I are different.
Time for another ďcheeryĒ update from Mommy. On the sarcastic side, the update is still the same Ö Yossi (AĒH) is still dead. One friend told me she read the whole site and was a little disappointed that the ending stayed the same. Another friend also said she read the whole site, but felt a little more upbeat Ö She read the site backwards, from end to start and when she finished, Yossi was still alive. *sigh* I just keep hoping that Moshiach will come. Maybe I want him for the wrong reasons, but at least I want him to come.
Right now I am nearing the end of my pregnancy. It has gotten so very hard. Part of the problem is physical. My back hurts real bad. When I walk, I get shooting pains in my back. I was having a lot of braxton hicks contractions, but they have slowed down. The other part of the hardness is the emotional aspect of it all. One of the kids said recently, ďYossi will never get to hold this babyĒ. That part is so hard. I donít even want to think about the nice stuff I do after I have my babies. I always take a picture of all my kids around the new baby. But how can I this time? One of the kids is (permanently) missing. When people see me out with the kids, they are surprised when I say this is my 6th baby. That is the truth. But in reality, I only tend to and care for 4 kids right now. In a way, I feel like itís not the totally truth. But Yossi is always on my mind and in my heart, so in a way I am caring for him. To top everything off, next week, Monday, August 26th is the 18th of Elul. That is the day Yossi was diagnosed the first time. Now I am very worried Ö I really do not want to have this baby on that day. I know that for Lubavitchers, this is a big and happy day. For us, it is a personal day of sadness. I do not want that surrounding the babyís birthday always. And then, we are heading into the holiday season. Rosh Hashanah, Yom Kippur, Sukkos, all of them. I know I speak for both Michoel and myself; we have horrible associations with all the holidays. Spending Rosh Hashanah in the hospital when Yossi had pancreatitis; Yom Kippur after his relapse Ö I stood in shul in front of the aron, and looked right at the sefer Torah, crying and begging Hashem to let Yossi live. Sukkos when he didnít achieve remission Ö the pathetic Simchas Torah we spent in the hospital. I personally would be very happy if Tishrei just disappeared from the calendar. This year is especially hard since its 5 years since he was diagnosed. It should be a time of celebrating Ö meaning that if he was still alive and didnít relapse, he would almost be considered cured. Instead, we are left with horrible memories. That is one thing that I think that someone who has never lost a child canít understand. Itís the memories. The pain and suffering and for what? He is still dead. Yes, we did have good times. And no, I would not give them up for anything. But still, the end result is the same. My heart has been shattered. I go about my life, but there is such emptiness to it. The other kids do give me comfort, but it doesnít make up for the loss. Yes, I do things with them, and we do have good times, but there is always a blackness hovering close by. Some people are so quick to judge and tell us what to do. (ďYou have to move on; you have the other kids to think of.Ē Well, trade places with me and letís see how YOU do!) I read a story in a magazine recently where the author was speaking about a woman who lost her daughter, and how she went to shul each week. The comment this author made was ďa lesser woman would have stayed homeĒ. WRONG. A ďDIFFERENTĒ woman would have stayed home. We all handle our grief differently. I am in contact with people from Chai Lifeline, and when I ask about how I am handling it, they tell me I am fine. The truth is, people say, ďI donít know how you do it.Ē And yet, if I stayed in bed all day, I would get yelled at as well. So the way that I figure it is like this. If someone did not lose a child, I totally ignore what they say. They have no idea what I am going through, and thus, can not tell me a thing. The only people I listen to as far as my grieving is concerned are other bereaved parents. Unfortunately, I have made too many friends in the last few years who fall into this category.
Yeah, I know that this is another one of my depressing updates. Sorry. Maybe itís the hormones. Maybe itís the fact that this is a horrible thing. It doesnít help when I hear almost daily about families in Israel who lose their loved ones Ö Or this morning I hear of a mom who lost a 5 month old baby (she was killed by a bear!). With all the craziness in the world, it is getting scary for everyone. My kids are not allowed to play outside (we have a nut job who is stalking the kids in our neighborhood for the past 3 weekends). The have bad dreams about people kidnapping them. When I was growing up, my mom was a single mom and my brother and I stayed home a lot. We rode our bikes and stayed out late. We never worried about these things. I never knew that kids could die. (I did have a cousin whose son died of meningitis when I was 8. I can hear my mom saying that the worst thing in the world was for a parent to bury their child.) It continues to infuriate me that the media will not call attention to childhood cancer. (Good Housekeeping, which rejected my article about Yossi since it didnít meet their editorial needs, ran an article about a girl and her dog. Couldnít figure out if the main focus of the article was the girl or the dog. But the thing that was the worst, is that while the kid is still on treatment, they say she has a good prognosis. How totally untrue! With two years left of treatment, how can they say that? They donít know. And there was no side bar with the stats on childhood cancer.) There is so much focus on 9/11, which was a horrible day. But no one realizes that each year, 12,000 kids are diagnosed with cancer. 3,200 of those kids die! And yet, the magazines only want the happy articles where the kids survive and beat the odds. Yes, more kids are surviving. But more kids are being diagnosed each year.
This is getting a lot longer than I wanted it to, and itís not going in the direction I had planned. One final note Ö I desperately need for people to continue to make donations for the library. My goal is to have the dedication on Yossiís next yartzeit, but I have only raised $13,600. I had hoped to have more by now. I have given out tons of pushkas, and sent memory books out. I just donít have the energy to do a major fundraiser. If anyone else does, and wants to do something, please feel free to email me.
Check out the quilts I have been making for the kids at iVillage quilting page. Thank you for taking the time to check in with us and see how we are doing. Next update will be when I have this baby, Please G-d.
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