I just want to get this link up ... Letter to Editor in our local paper If you want to copy the letter and submit it to your local paper, feel free to use it! I want to spead the word about childhood cancer, and let people know that it's still affecting so many people. One stat you won't see mentioned when "they" say how cancer is declining is that childhood cancer is rising each year by 1%.
This is Papa. I am just going to throw down my rambling and disjointed thoughts. On September 11, I was very upset with what happened in America. I was really surprised at how profoundly it did affect me. I also worried that maybe I was feeling worse about that then I did when we lost Yossi. However, now I realize a few things. When Yossi passed away I was in shock. And, the truth is, I still am. And, while I still feel bad about what happened to all those people, the initial feelings have worn off to a great deal, as I am sure it has for many people, except those directly impacted. That, I guess, is the normal way of things. The brain makes you forget, it dulls the pain and the memory, in normal situations. In our situation, however, I continue to feel bad, I continue to feel worse each day than I did the day before. This is because what happened is not the normal way of things. I have really stopped trying to explain it to people, because if you havenít experienced it, you just donít know. I tell people they would not understand, I donít expect you to understand, and leave it at that. It just adds to our misery that we have to keep trying to justify ourselves to others. Sure, for the most part people mean well, but we feel like outcasts. I mean, we really donít have anything in common with the people here anymore. This dominates our lives, this IS our life, just like it was our life when Yossi was sick. Although the uncertainty of the disease and prognosis is gone, this constant and pervading pain and longing is much worse and will never go away. I am sure people are sick of all this already. They all helped us and were very very kind to us, but now it is over, time to move on, no one wants to hear about it or deal with it anymore. And, who can really blame them. Like I said, if you havenít gone through it you canít relate. Just like I canít really know how someone who lost a parent or spouse feels, and I really donít know what to say to them.
It is all too hard. I would like to move away somewhere where ďnobody knows our names!Ē Then we can just wallow in our grief and nobody will know. I have mixed feelings. Is it better to leave, and leave behind all the things that remind us of Yossi? But then we would be missing out on all the good memories too! Plus, Yossi is buried here and although I am a very bad father and havenít gone to his grave in about 5 months, I still donít want to leave him here all by himself. I find it too hard to go, at least I think that is my reasoning. I feel that the next time I go, I will not be able to leave. There is no way to describe how much I miss Yossi, and how much it hurts. I know there is some more video of him in MN, some where he just slightly conscious, but I can not bring myself to watch it, although I want to. I donít want to see him seem slightly better, with the hope of recovery. And then return to reality with our hopes brutally dashed, our fears horribly true. I love my other kids and sometimes I try to replace Yossi with them, in certain ways, maybe do some of the things I used to do with Yossi with them. It is not the same. And it wouldnít be the same no matter which child it was. Each one is different and special in their own way. Also, I have not had a dream with Yossi in it for a very long time. I do have many many dreams about Yossi, or about the aftermath. I have lots of dreams about Minneapolis and the events we experienced there. I donít understand why I havenít had a dream about Yossi in so long. I think of him all day.
So, I struggle through each minute of the day and night. Our other kids are a big challenge for us, trying to discipline them and deal with all of their concerns and problems. And, they are affected by what happened and by the way things are now too. There are no answers. I know my life will always be like this, there is no light at the end of the tunnel, nothing to look forward to anymore. Life is just a chore. Life is miserable and unfair. We had Yossi for such a short time and it wasnít enough. I also feel like it wasnít enough for him either, I know how much he enjoyed life, even when he was dealing with the pain and uncertainty of his disease and treatments. His empty room haunts me. I try to go in there once in a while but I have to run out after only a few seconds. I keep his shoes on my shelf and I wear his dogtags. It is not enough. Just like naming a school or library after him is totally insufficient. Nothing can replace him or make us feel better about losing him.
I know it probably sounds like all I do is complain, and it is true, I am complaining. There is nothing I can do now to fix this, to bring Yossi back. I donít see how I am supposed to face the rest of my life without him. At least I have my wife. We are now closer to each other than we ever have been before, we are the only ones sharing this tragedy on such a level. We are two sorry, aimless, bewildered people.
I commented to Leah 2 days ago that I have not had a dream with Yossi in it for a very long time. I have had dreams that were about Yossi in some way, but not with him in them. I thought that maybe he is mad at me for not going to see him in over 5 months. Well, since then I have had dreams with him in them each night. I donít remember much, but in the first one he was being not very tolerant to another sick boy. So not like him, but he was expressing anger, just like I suspected he was angry at me. And, last night, it was one of the typical dreams I used to have, where he is lying unconscious and unmoving in the hospital bed. This time, however, he started to wake up and move. Painful dreams, but at least I saw him again!
Feeling guilty is kind of what you would expect, I guess. Lately I have been feeling extra guilty. Maybe I sat there too passively? Maybe I could have yelled and screamed at Yossi to wake up, get better, start moving? Maybe I could have yelled and screamed at the doctors, or G-d, or someone? I mean, I tried to do everything right for Yossi. It all happened so fast. One day he was 8 days post transplant and the next day he was intubated. When he was first intubated, I still didnít think it was serious. The doctors told us that it was just for a while, to give the dialysis a chance to work, get his lungs back in shape. Just to make it easier for him to breathe while all this supposed healing was going on. Sure, it was scary seeing him like that, but I was sure he was going to be fine. How could he not be fine? This was Yossi, the miracle boy. The boy who bounced back from rampant Leukemia, extremely high and long lasting fevers, from spending time in the PICU with seizures that left him unresponsive and dazed, from several false alarms. This was Yossi, who returned to school, who got back in shape, who matured into an awesome, smart, funny, and talented boy. This is the boy that I canít bear to live without. The boy that I miss so much, that I would do ANYTHING to be with him somehow.
In general, our home life is going down the toilet. I really feel the other kids are good kids, but we just canít get things under control. Everything seems to be a constant struggle. I want the kids to be happy and try to have a normal life and grow up not too scarred. This is easier said than done. They appear to be ok, doing well in school, playing with friends, etc. Maybe it is that being at home is too hard for everyone without Yossi there with us. I guess we each miss him in different ways.
Yesterday was exactly 8 months (on the secular calendar) since Yossi left physically. On Friday, I went to visit Yossi as I do each and every Friday. Well, low and behold, some lowlife had stolen the beautiful rocks I bought at Busch Gardens a few weeks ago. Everywhere I go, I look for a rock to leave for Yossi. Last year when we went to Denver, Yossi wanted to buy a bag of rocks at the museum. They were $5.99, and I thought it was a ridiculous waste of money. I think in the end I let him buy it, but I gave him a hard time about it. (They were highly polished rocks that you pick out and put into a tiny little bag. If I remember correctly, and usually I donít, he shoved a bunch of rocks into the bag.) His friend Guy brought two similar rocks months ago when we went to visit. Guy explained to me that he and Yossi used to play with the rocks. The next week, those two rocks were gone. This time, the rocks were there for several weeks. Someone picked through the rocks on top of the stone to get only those nice ones. I was so heartbroken. Yeah, they are only rocks. But they have meaning. I picked out the colors Yossi liked, and each one was lovingly left there. I mean, COME ON! I have nothing else. What else I am going to do for him? I canít wash his clothes, or cook his favorite foods. Leaving rocks is what we do. And now that has literally been stolen away from me. What is worse is that I was at the bottom of the pile of those rocks. I donít have a single rock left from Busch Gardens. Yeah, I know that Yossi knows that they were there. Maybe I am not just doing it for him. Maybe I am doing it for myself. The cemetery is in one of the worst parts of town. I KNOW it has to be someone from there. I have decided that the next time I buy those kids of rocks, I am writing his name all over it in permanent marker. If someone still wants to still them, they will have a reminder of Yossi. It just annoys me to no end that there is absolutely nothing in this world that is scared. Come on, we are talking about ROCKS. How low do you have to be steal rocks off a grave???????????
After Shabbos, I got some more bad news. You can take Yaakov Elazar ben Zlata off your list. Yaakov Braver returned his soul on Friday, about an hour before Shabbos. *terribly big sigh* You may be wondering what you can do. There are several things that YOU can do to help. First, call your congressmen and senators and let them know that you want more money going to childhood cancer research. It took me less than 10 minutes to make all the calls. They have aides who answer the phone, and take your name and comment. You donít even have to leave a phone number. If you are so inclined, you can send an email (government offices are still not accepting snail mail). Basically, you have to ask for increased funding to the NIH (National Institute of Health). The last several years they have said they would increase the budget, but failed to do so. This year, with the events of 9-11, I am sure itís going to be low down on the priority scale. This just has to stop. Also, there is an organization that raises money for research. They have put out a calendar. You can buy it here. One thing that I really like about them is that they only take 5 3/4% of the money raised for overhead. That means that 94% of each dollar goes to research. There are very few people who can say that!!! They work with COG, the group that oversees childhood cancer. I highly encourage people to look into them. I havenít updated in a while, but I found out that Yossiís room mate (from his first chemo last year), Brett has also relapsed yet again. Brett is Yossiís age. They were both initially diagnosed at the same time, and they both relapsed around the same time. I thought that Brett was doing fine, since I hadnít heard from his mother in a long while. Seems that the doctors have been unable to get him into remission. They are going to go to Minnesota if he goes into remission. Please keep Brett, son of Katherine in your prayers.
A couple of weeks we got a nice surprise. David Baldacci sent us his new book. Here is the link to see the note he wrote us. And this is where you can see the dedication in the book. It really means so much to us! If you are interested in buying the book, click here. Itís $10.00 cheaper to order it off Amazon than to buy it in the book store. We were at Barnes and Noble last night. I was sort of hanging around the display. I thought I would get kicked out if I started telling people to buy the book. *another big sigh* So is my life.
Harry Potter is opening this Friday. Yossi would have loved to have seen it. I bought tickets to take the kids Friday morning, to the first showing. Yeah, I know I am nuts. Who pulls their kids out of school to take them to a movie. But I want to do it. We are going to take my mother-in-law as a birthday present. Then we are going to visit Yossi after the movie. I have been re-reading the books. I got a hold of the British version of the first two books. I just ordered the 3rd one (which I finished for the second time), and have moved onto the 4th book. I asked Michoel last night if Yossi would mind. I am reading the copy the Mr. Baldacci gave Yossi. Itís the British version that is signed by J.K. Rowling. Michoel told me that Yossi wouldnít mind at all. I forgot the exact quote, but it was something to the effect that itís ALWAYS ok. Such a good boy. I also ordered 2 dozen Harry Potter bears. I am going to send 14 of them to Fairview for Yossiís yahrtzeit (anniversary of his death). The rest of them I am debating giving out at this hospital here. I donít know. I was also toying (pun intended) with giving them to some of his classmates. Donít know. I have a few more days to decide.
The next Horizonís Magazine came out. They did a beautiful job with my last article on Yossi. You can get it at a local Judaica book store. I think that Feldheim might also have them. Feldheim's site Do a search for Horizons. Also, the hospital has an organization called ASK. They have a newsletter. They are going to print a condensed version of my story in it. I will put a link up to it when it comes out.
Finally, the boys high school has approximately $9,800. I am not sure, but I think that I need to raise 25K to have the library named after him. I have pushkahs (charity boxes) that I have to make labels for. If you are interested in having one, please send me an email, but itís going to take me a while to do it. A friend of mine in Baltimore is going to have a raffle. It was her daughterís idea. Itís for her Bas Mitzvah project. As I get more information, I will let you know. I was thinking of doing a raffle here. I donít know. I have only so much energy, and a lot of it goes into getting out of bed each day, trying to take care of the kids I have, cooking, laundry, etc. Sooo, all these projects that I so wanted to do get pushed off day after day after. Itís so interested. When Yossi was alive, I had to much energy to do a million things. Now itís all I can take to get out of bed each. The pain and longing are there, all the time. I guess that after a while you just get better at hiding it. Ok, gotta run. Good night.
Quick update. I had planned to update on Thanksgiving. A cyber-friend from JP Net wanted to know what we were all thankful for. I had a few things that I was tossing around in my head, but never got around to putting it down on paper. I will say that I am thankful for technology that has enabled me to make so many friends ... and for my wonderful husband, who loves me and puts up with all my shtick ... But other than that I never totally finished my thoughts.
My close-friend Aviva had a baby a couple of weeks ago. She gave me a wonderful gift ... She and her husband Ahron named the baby Yossi after my Yossi. It is just so incredible. For me, this was truly the biggest nechama (comfort) I have gotten. There is nothing that can compare to this living memorial for my son. Me, the one who writes and talks all the time, well, I was just speechless. It still amazes me that she did this. We never spoke about it. Nothing. It just means the whole world to me. I really thought that I was going to have to wait until I had grandkids for a name.
On a much sadder note, Regina Throne passed away on Tuesday night. She had had a transplant at Fairview almost 3 years ago. Her father came to visit Yossi, and he was there (with his daughter in-patient) the Shabbos Yossi passed away. They have a daughter in Goldieís class. They are such a nice family. Regina survived her transplant. The chemo totally fried her insides, and she was unable to eat. She was in a lot of pain. I have said it repeatedly, we need a better cure. BMTs do cure, but at what cost?
The biggest shock to me came when I got an email from Brettís mom. Brett you may remember was the boy who was originally diagnosed the same year as Yossi (a couple of months earlier than the YossMan). Both boys relapsed around the same time. They were the same age and had the same likes and dislikes. Yossi met Brett when Dr. Grossman had them sharing a room together. Brett was doing fine when we left for MN. I spoke with his mom a couple of times after we came back, and everything was fine. I did find out a couple of weeks ago that he had relapsed yet again. The plan was to try and get him into remission and then head off to MN for a transplant. That didnít happen. Kathryn told me tonight that they buried Brett today. My heart is breaking! Another family! Why doesnít anyone seem to care??? You donít see people shouting from the roof-tops to get a cure. You donít see people running to donate money for the research. How many more kids have to die before we as a nation say ENOUGH. Yeah, the cure rate is approximately 80%. But who wants their kid to fall in that horrible 20%? We sure didnít.
My kids are doing OK. I got a really good report from Goldieís teacher. This was the same teacher who taught her in 4th grade (and in 2nd). She dealt with Goldie during Yossiís transplant. Jeannie told me that Goldie is really doing so much better now than when he was on treatment. BAĒH! (blee ayin horah, no evil eye) Shauly leaves us a lot of love notes around the house. I think that he needs some more attention. Chanie is still clingy, but a little less so. Sruli saw a picture, and asked me who that boy was in the picture. It was Yossi. He keeps insisting that Yossi is coming back at Chanukah. Oiy, I wish. I am doing fair. I do what I have to do. I have taken up sewing, and find it very relaxing for me. Michoel, well, he is still having a very hard time. He has a lot of issues that he has to work through. We have grown closer through this. Like I said above, I am very thankful that he is here with me. I am so lucky to have such a wonderful and caring husband.
So you donít complain that I left you with only bad news, I will tell you that Yossiís second counselor from Camp Simcha, Avi R. got engaged! Mazel Tov to Avi and his Kallah (bride to be). Also, Dabney, Yossiís language arts teacher found two essayís Yossi wrote. The first one was spectacular! He wrote the ďWhat I did this SummerĒ type essay. He talks about his two trips, but mostly he mentions his fantastic time at Camp Simcha. It was so great to get this little piece of him. It was sort of like a breath of fresh of air. It helps me to feel connected to him. Gínite.
I know...we all know that Yossi was concerned about us...if anything were to happen to him, he was worried how we would be. He wants us to be ok and not to be so sad. However, there is no way Yossi could have fathomed how totally desolate we would be without him.--Pops
Update written by Mommy.
9 months. I guess I never realized that it was almost exactly 9 months from Purim to Chanukah. And here I sit. One year ago we were sooo incredibly happy. We had had our family gathering. We gave our kids more presents then they could even care for! We had a wonderful meal. There was so much pure joy. A celebration of life. It was at the end of Chanukah that we received the devastating news that Yossiís chemo wasnít working. And here we are again ... the world has continued to turn, the sun has gone up and down countless times, etc. And yet, for us, the world will never be as bright as it was. People think that if we keep busy, we wonít miss him. If we go to an event, or even smile or laugh, we are ďover itĒ. This just isnít so. I know for me, I have learned to keep my true feelings inside. For anyone who has had a child, you know what I say when you find out you are expecting. Itís bliss. You donít forget you are expecting. You donít forget that you are carrying a new life in you. Same with us now. We carry this baggage with us that we are missing a vital part of lives. We continue. We shop, we light the candles. But there is always an emptiness that is lurking around, like a black cloud on a beautifully sunny day.
I know that this all sounds terribly depressing and sad. Well, itís not necessarily so. Itís a way that I have grown accustomed to. I donít feel depressed, or overly sad the way I did months ago. I still miss Yossi with every breath I take. But the pain has become a part of me. I can push the bitter horrible memories out of my mind, or I can call them up. I am not being controlled by the memories, I feel like I am controlling them. This past Friday, when I went to wish Yossi a good Shabbos, I closed my eyes. I could picture myself in the kitchen last year, close to Chanukah when he came up to me and hugged me. I could see his smiling face. Those are treasures to me.
One thing that I have observed about bereaved parents is that we cling to the past. We HAVE to, as we have no future with our child. All we have are those memories. There are no new memories to be made. I feel no guilt in surrounding myself with pictures of Yossi. I have new memories with my other kids. I can only hang onto what I have.
Today was a national memorial day for families who have lost children. What I found the most ironic (right word???) was that is also the first night of Chanukah. So not only are we Jews lighting candles to remember all the miracles, but we are joined by people around the world. It just seems so neat to me. I am not positive about this, but I do believe that it has passed in the senate, and it will be an official day ... The second Sunday in December will be National Child Remembrance Day, or something like that.
Wanna know what is the weirdest part of this update? It sounds so depressing and downbeat when I read it, and yet, I am not. It is getting harder and harder for me to express myself when I used to find it so easy. I know that so many people care about us, and what to know how we are doing. I feel like I have been moving forward ... doing my ďgrief workĒ as they call it. Michoel I fear is stuck. He is so depressed, so down. I wish that there was something that I could do for him, but we all have to work through it on our own. I have so much comfort with my friends from JP Net and the other bereaved parents I have met over the last few years.
I pray for peace for all of us. I still want to encourage people to donate to the boysí high school fund. I am finally making the pushkahs (charity boxes) for people to make donations into. If you are interested in getting one, please send me an email with your name and address. I hope that everyone has a wonderful holiday and that we merit seeing the end of this horrible golus (exile). Gínite.
Itís Mommy again. First of all, I want to let you all know about a raffle my friendís daughter is hosting. Karen B. used to live in Richmond. In fact, when I was cleaning up Yossiís room, I came across the fireman yarmulka she gave Yossi for his first hair cut. Her daughter Shira Mindel (who I remember being born! Yikes, does that mean that I am truly getting o-l-d???) is having her bas mitzvah this coming February. For her tzedakah (charity) project, she is having a raffle to raise money for the high school. The raffle will be on Feb. 17, 2002, IYĒH. The tickets are 1 for $5 or 5 for $20. The prize is a year of New York Chocolate Cream Pies or a year of Bouquets of Flowers. You can contact Karen directly with questions at Karen
Fradi B once asked me to speak of memories of Yossi. Being Chanukah, I felt like remembering some of the old Chanukahs ...
Of course, the strongest memory I have is of last year. I worked with Yossi showing him how to make latkes (potato pancakes). Now let me tell you, donít even think that you can buy the ones in the store and it comes anywhere close to real latkes. Forget about cholestoral. These latkes are loaded. There is no such thing as a diet when it comes to Jewish foods! Anyways, so I taught Yoss how to make latkes. He was pretty good, except it got boring after a while, since we always made tons and tons of latkes. I mean, you can never ever make enough, since everyone has to taste one (or two or three or four) while they are frying. And then once you feel totally bloated and full from all you sampled, magically there is room for 15 more once you sit down at the table. I donít use a recipe. I just mix the eggs, oil, onions, salt and pepper in the food processor. (No one grates the potatoes by hand anymore! Welcome to the updated version of Jewish cooking.) Then you put the potatoes through the processor twice. First on shred, then squeeze out the ďwaterĒ and then for a few seconds on grate. We always add the matza meal after everything else. To me, the hardest part was the frying. Yossi really got the hang of it. We would have two pans on the stove going, as well as the electric skillet. Yossi had this whole system of which pan needed latkes when. He liked to make them thick, and then smash them down so they would cook. He loved the crispy ones. Yossi would have eaten latkes each and every night of Chanukah if I let him. Of course, last year I had the latke fiasco ... I accidentally left the whole pan of latkes in the oven reheating over night. Whoops! I had to replace his batch with a batch I made myself. Yossi also taught Ariís family how to make them.
We were never big on presents. From the videos we have, I found the one when Yossi was 4. He had told us about a lego set he wanted. When he opened the package, he is jumping up and down, shouting, ďThis is exactly what I wanted! Thank you so much. How did you know what I wanted?Ē It was so nice, but so bittersweet to see it. Yossi always had his own menorah for as long as I can remember. Last year we bought him another new one. I feel so bad he only got to use it for one Chanukah. Yossi enjoyed the carnival we have in school. He always wanted to win the raffle they have ... but he never did, and now he never will. *big sigh*
Of course, the very best memory I have is when Yossi finally went into remission. The date in Hebrew is 20 Kislev (Dec. 19). It was a few days before Chanukah, and the not-Jewish doctor told me, ďItís another Chanukah miracleĒ. Those were the words that I had been waiting to hear. He had to be in-patient right after that, but he made it out in time for Chanukah.
Yossi was always grateful for whatever he got. One year we were goofing, and wrapped something small ... stickers, maybe??? Anyways, he said thank you, and truly didnít look disappointed. I donít remember what else we gave him. Just he was satisfied with what he got. Not many of us can say that, can we? Well, now instead of feeling better, I am starting to feel sad again, so itís time to stop. Gínight.
Richmond got its first snow of the year. We got 5-8Ē, depending on who you ask. Normally I love the snow. I watch it and wait to see how much will accumulate. Then I keep running out and measuring it to get a good reading. I take my yard stick and run to different parts of the house. Once school is officially closed, I go back to sleep. Then in the morning we all bundle up and head out. I try to build as big a snowman as possible. That way we will have some snow in one spot for a while. Well, this time, I stayed in bed with my head under the covers for as long as possible. Once Michoel told me school was closed, I went right back to sleep. Sruli came into my bed later when the big kids went out to play and wouldnít take him. When I finally did get out of bed, it broke my heart to look out the winter. Oh, how Yossi loved the snow. We would play and measure and have a great time out there. His last words to me on the snow issue were: ďBig whoops, I canít play in it!Ē I had been trying to coax him out of bed to watch the big snow fall expected in MN last year. So for me, snow is sort of ruined. I didnít step foot out of the house from Thursday until Shabbos when most of the snow was already melted. I know, he wouldnít want me to not enjoy the snow. But I figure, where he is, HE STILL CANíT PLAY IN THE SNOW. And yes, I know that where he is, he doesnít even WANT to play in the snow. But that said, IT STILL HURTS LIKE CRAZY.
So basically I have figured that my life has come down to this, bad days, and not so bad days. Itís not something you get over, or recover from. Itís something that you continue on from. That is what we are trying to do. Just continue on. I go to school each day, and see his friends. There is this crazy feeling I get when I see his friends. At first glance, I think, ďYou arenít supposed to be hereĒ. Then I think, maybe Yossi is right behind them, or coming down the stairs in a moment. Sometimes, I canít believe that he is truly gone. I try to picture what he would like now, or what he would be doing. We are coming up on some very very hard days. First and foremost is the date we left for MN. Then the date he should be 4 years post transplant. Then the date he should be 1 year post-2nd BMT. Finally, the last day we got to hear his sweet voice. One memory I cherish is the last words he said to, ďI love youĒ. Oiy what I would give to hear them again. Itís so hard to believe in a few weeks Michoel will stop saying Kaddish (the prayer for the dead said during the first 11 months after someone dies). Then we move onto his yahrtzeit. I canít believe that I have to plan a yahrtzeit. It isnít something I thought I would do for a long long long time. My mom didnít lose her mom until she was in her 40s and my dad still has both of his parents living, Thank G-d. So that is what I am doing now, working on his yahrtzeit. The date on the Hebrew calendar is the 16th of Adar. That falls out on Feb. 27 (after sunset) this year. What I would like to do is have a dinner for our friends and family, especially the people who travel in from out-of-town. Then, I would like to have a speaker and invite the whole community. I asked a rav from MN, and I am awaiting final approval. If there is anyone who would like to attend, please send me an email so I can make housing arrangements. (BTW, totally off topic ... to those of you who asked for pushkahs, they glue is so messing that I have stopped doing them for a while. I will start again in time for the yahrtzeit. So if you didnít get one yet, you will!) I wanted to do something special for Yossiís class the next day, but I am not sure what to do. I wanted to give them pizza, but itís the same day as Mishmar, and that is what they serve the kids for dinner. I am very open to suggestions.
Finally, on Friday I am going to clinic to take a tour with Congressman Cantor and some representatives from the Leukemia Society. We will also have a chance to meet with parents and voice our concerns and wishes. So, thatís it for now.
Today is 1 year since Yossi left his home to go to Minneapolis. And of course it is one year since he has been home. Well, I had another one of my disturbing dreams last night. In this one, Yossi was missing. How true it was, as he IS missing. Although, in the dream, the possibility existed that he could be found, he could return. Not so in real life. The dream sums it up, Yossi is missing, and that makes everything else in life more horrible than I can describe. Each day without Yossi gets harder than the last. Since he won't be coming back, there is no end in sight.
I personally am becoming so depressed. Itís so hard to believe that just a year ago we were in MN. Yossi was so happy to be going. There was never a question in his mind that he was going to be cured. He enjoyed the airplane ride, and the hotel was awesome. He loved swimming in the pool, or relaxing in the hot tub. Mall of America was great. Anything he wanted, I said YES to. And then the rides. Finally, we headed off to the kosher store, where again I let him get what ever he wanted. How I wish Hashem would have given me what I so desperately wanted. Each day I wake up, and itís still real. The world just keeps going on and on. I have to put on this mask each day when I go to work, and pretend that my heart isnít broken inside. Everything seems so meaningless without him here, so incomplete. Itís not like you can get so totally caught up with something that you forget what has happened. Yossi is never far from my thoughts. But now with all these days coming up, itís so hard not to think what we were doing this time last year. The abyss that I had sunk into last summer is threatening to consume me again. I feel myself sinking into the darkness again. I know that what I am about to say is going to sound so radical, but this is my thoughts, and I can think what I want! One thought that is haunting me is that the world is not ready for Moshiach. I see so many lost souls in this world. It hurts me that they donít know, or donít want to know. I think, do we all really WANT Moshiach? I know that I do. But is everyone ready to leave behind all their material things and move into a world with total G-dliness? I donít think so. So that makes the pain even more unbearable. How much longer will this golus last???
The main point is that I miss Yossi terribly, and I want him back so bad.
Mommy writing, so excuse the typos.
This SHOULD HAVE been Yossi's 4th rebirthday, and almost one year post transplant. Instead, we are quickly approaching a year since his passing. Next week, Michoel will stop saying Kaddish for Yossi. It is our custom to keep a candle buring for the whole first year. We have these seven-day candle (that usually only last 5-6 days) that we have continued to light for him. I found so much comfort in lighting the candle. When the candle first starts to burn, it's a very weak and tiny flame. Over the next couple of days, it gains strength and glows brighter. Finally, the candle flickers and sputters, and goes out. (Of course, the next one is already lit and waiting ... except for a few times when my timing was off.) I often thought how much this seems to be like a person's life, starting off weak, growing stronger and stronger, and then slowly dimming. To me it's going to be so hard to see the spot where the candle sat for the last year (almost) be black and dark. *sigh* I am dreading that.
Never a dull moment in my house. Sruli bumped his head on the corner of the counter late tonight. He let out a sheirk, and starting crying. He asked me to hug him and kiss him while laying on the couch. As we are hugging, I notice a little cut with blood oozing out. Been there, done that. The kid probably needs a stich. So I call the doctor. While we are waiting for him to call back, I mentioned to Sruli we may need to go to the hospital. He starts crying, "Not the one Yossi went to". Well, thankfully when he called back, he said that it wasn't worth it to put him through a stich, especially given what our family is going through. Now I am starting to wonder if Sruli is eventually going to need help ... Was he traumatized by what happened? I guess only time will tell. It is finally starting to dawn on him that Yossi really isn't coming back. He kept saying that he is coming back for Chanukah. Today he told me out of the blue that Yossi ISN'T coming back for Chanukah. Not for his birthday ... He understands that he isn't in the hospital, he is up with Hashem. Chanie is also making some progress. She told me tonight that she isn't crying as much as she used to. I was really mean, and asked, "Is it because you don't miss Yossi as much or because you feel that you don't need to?" (Then I realized how horrible that is!!) She said it's because she doesn't feel the need to. I explained that was good, and that she was making progress.
I would like to wish my grandfather a happy 95th birthday, as well as Chanie (her secular birthday is tomorrow), and both of my uncles, Eddie and Harvey. (They both are the same age and have the same birthday. How cool is that?)
Finally, today really wasn't too bad for me. It bothered me, but it wasn't as horrible as the 14th was. Next hurdle, Jan 30, the day of the fateful transplant. Talk to you next week. ~ Leah
Now it has been 1 year since Yossi was last conscious and able to speak to us. The day before, Feb. 7, 2001, the doctor suggested we bring my parents and the kids out to Minneapolis becuase things were going down quickly. I thought that it was a bad idea. In my stupidity and naivetť, I said no. The next day, Feb. 8th things were so much bleaker and I changed my mind. By the time they all arrived, it was too late! Yossi was intubated and sedated, and never recovered. Add that to my long list of mistakes while out in Minnesota last year. Again, 1 year has gone by since last hearing Yossi's voice, since last experiencing his kindness and humor. There are no words to describe how I feel, I can't even understand or describe it myself. No, even though it has been a year, I don't feel any better, I feel much worse. I will never feel better, and I don't want to ever feel better. I was reading back through our website posts of a year ago, reliving the horror. It hasn't faded in the least. As time goes by my helplessness during that time haunts me more and more. Life is ruined. There is nothing to look forward to. I have obligations I must take care of, but that is all there is. The longer I live, the worse it will be. As the days, weeks, months, and years go by, I get farther and farther away from my last time with Yossi. There is nothing to take comfort from, not good memories, not religion, nothing. Why?...because NOTHING will bring Yossi back, so it is all pointless.
This is Leah writing, and once again I am writing straight in HTML, not using Word, so if there are typos, I am sorry.
Michoel wrote the last update. As you can see from it, he is terribly depressed, and doesn't seem to want help. There is truly very little I can do. I DO find comfort in religion. In fact, I have gone the opposite way, seeking more and trying to do more. Part of me feels obligated to do more for Yossi, since he isn't here to do it for himself. Yes, I understand that he no longer NEEDS to do mitzvos, but I am his mother. I have to do for him. This is the only way. So I give tzedakah for him each morning. I daven because it's what he I promised to do together. I say Shema each night for him. I do for him. 'nuff said.
I got a great tape from Chai Lifeline for bereaved parents. In my head I can understand that G-d has a reason and a plan. It all makes sense. But G-d also made me a mom who is filled with love. And in my heart, it just aches. We are now in the horrible rough days. Just too awful for words. I don't even need to go back into the updates from last year ... they are all engraved in my head like a horrible broken record. They say with time the horrible memories fade and the beautiful memories come forward. I hope so, becauase it's getting harder to remember the good times when we were home and life was normal.
A friend asked me if write when times are bad and we feel sad or if it's always bad. I guess for the only thing I can say is that I personal write when I feel the need to. Since he has gone, I find that words are very limiting in what I need to convey. I can't use words to truly explain myself anymore, hence less updates. (That and the fact that there is no new news ... he is still dead.)
While the three older kids continue to do well, Sruli is talking a lot more about things. It seems that even though he was only two, he remembers so much. I see now that he has developed a fear of hospitals and illness in general. When he went with Grandma Ilene to take her mom to the doctor, he makes sure to tell me that she isn't sick like Yossi. He said today when Chanie got a tiny nose bleed that Yossi had nose bleeds. (How he remembers that, I truly have no idea ... it's been almost 14 months since Yossi had one at home, and I don't think he saw Yossi in MN with one.) He is too young right now for the support group I am doing with the older kids. Maybe on the next round? I don't know.
One final point ... each and every day is hard. Yes, there are moments when I am happy with my other kids. But I still feel a twinge of sadness in everything I do because I know that Yossi isn't with us. There are some glipses of joy in my life, but so far it's never complete. G'nite.
This is Papa. I must apologize to all the readers of this page and to everyone else who knows of our situation. I am very sorry for subjecting everyone to my complaints and sorrows. I was wrong. Everybody else was RIGHT! It has been almost a year, but I am now officially over it. It took too long, sure, but at least I got there, right?! I really canít believe how naÔve I have been.
I now realize that Yossi is in a better place; he fulfilled his ďmissionĒ in life; he is no longer suffering; he got to do so many things and go so many places; so much good has come out of his illness and death; I have so many other things to be happy about; all his struggles and suffering were not in vain, as he got an extra year or two of life; there is a good reason for this and one day I will find out.
Wow, it feels so good to just write it, it is like a giant burden has been lifted. Now, I can go on with my life and be happy. I can put all of Yossiís suffering aside. I can walk by his room and not feel bad that it is empty. I can look at his pictures and not miss him so much as I know he is ok. I can look back at the last 30 days of his life and just take comfort in the fact that I could be there with him. He was a young boy, so he had no sins and is enjoying the afterlife now. I can patiently wait for the day that I may be reunited with him. I can face the one year anniversary of his death and go to the dinner we have planned and not feel any sadness. The memories of almost 13 years with Yossi will sustain me for the rest of my life, which I hope is very long.
Thank you, everybody, so much for all of your wise advice and helpful suggestions!
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