Not a Yossi update ... just a note to let you know that I am moving the kids pages off of Yossi's site. We are trying to update them. Sruli's has the most stuff on it. Either go all the way to the bottom of the page and find the link there, or click here: Other kids pages . It's a geocities site ... so it tends to time out a lot. Sorry, but you get what you pay for. ~ Leah
Yossi has a new baby sister. Basically, she was born yesterday, and it truly a miracle she is alive. Even the doctor said it. She was born with the cord wrapped around her neck and a big knot in the cord. The baby is not yet named. She has her own site as well at the kids site. In case it times out, you can also view at my own site. Miss Paley's site Pictures will be added soon. (Maybe later tonight if Papa is up to it.) ~ Leah
Leah typing here ... not using Word, so if the words are mispelled or things are not perfect, that is why. Also remember that I am very sleep deprived!!!
Michoel named the baby on Rosh Hashanah. Her name is Shoshana Miriam. Miriam means "sea of bitterness". (It can also mean bitter water, which is basically the same thing.) I thought it was so perfect for her for a middle name, since we both feel like we are in this very bitter place! I had wanted to use the name Nechama for her first name, since it means to comfort. I felt she would be a comfort for me during this hard time. Michoel said that nothing will truly be a total comfort, and he wanted the name Shoshana. (His grandmother's mother was Shoshana, and no one has named after her yet.) Shoshana means rose. He feels that she is a bright spot in our bitterness, which is much nicer than Nechama anyways! So that is how she got her name. Truly for me she has brightened up my hard time. Although, after she was born and the kids left and she was taken to the nursery, Michoel and I were both over come with sadness. It truly epitomized our life now. Everything is bittersweet. At times of joy we feel the lose of Yossi's presence even more. (It hurt so bad to have Michoel take a picture of "all" the kids with the new baby knowing one of our kids was not there!)
I got pictures up. I have 3 sites set up to deal with the limits of how much bandwidth I can use! (They are all exactly the same!)
Shoshana's page
2nd Site
3rd Site
OK, heading off to bed. G'night. ~ Leah
Papa here… I haven’t written in a long time. It is really amazing how life is made up of such big contrasts and opposites. We have a new baby girl, and she is really awesome. She makes me very happy in many ways. However (you knew a “however” was coming…right?) she does nothing to alleviate the pain of not having Yossi. So, in a year and a half, we have gone from losing one child to having a new one. Neither event lessens the impact of the other. She will never know Yossi, and that is so sad. All I can hope for is that she grows up healthy and has a nice life. Time is going on, Yossi should be growing up, but he is forever stuck in time as a 12 year old to us. The other kids are catching up to him in age, and that just seems crazy. How could Goldie ever be older than Yossi? Things are just not right without Yossi here. All I know and see is that his bones are rotting in the ground at the cemetery. That is the only reality to me. I don’t have the faith to believe for sure that anything else is true. I don’t feel his presence around me like other bereaved parents claim. The opposite, I feel the big gaping void. If believing in stuff like that makes a person feel better, then it is good for them. But, the reality is, like I said, that he is in the ground. Maybe there is a spiritual aspect of this, but I don’t see it or feel it. Let me digress for a minute. Back in February of 2002, I penned an update that said that it has been almost a year and now I feel better and I am “over it”. What really surprised me is how many people took that at face value! I did not write that as a “joke” I guess you could say I was being sarcastic, but not for comic effect. I wrote it because that is what so many people thought we should feel. I wrote it because I was fed up with all of those people. But mostly I wrote it to make a point, that it doesn’t just happen like that, at least not for us. You can’t just get over it. Still, many people took it that wrong way, and we thought it was crazy. Some people even refused to communicate with us anymore after that. That was really bizarre. We don’t owe anybody anything on this site. We write it to express how we feel, and keep a record of our struggle. When we don’t write, people ask us why not. If you don’t like what you see here, don’t come to our site, it is as simple as that. If our grieving doesn’t fit your view, then I guess that is just too bad. If you have not gone through what we continue to go through, then you can’t tell us how to feel. Even if you have, everyone reacts differently, but I would assume there would be a lot more empathy involved. Ok, continuing on this theme. When we had our 1 year “anniversary” of Yossi’s death, we were told, PUBLICLY, that it has now been a year and we can now rejoin the community, we don’t have to feel different anymore, yada yada yada. Well, we disagreed with that then and still do. We cannot go to community celebrations, parties, or events and feel comfortable. It hurts way too much to be around happy people and situations. I mean, I can’t cut the grass without feeling sad, how can I go to a party? I remember when Yossi was first diagnosed and I saw a stranger smile, I couldn’t understand how anyone could be happy. I still feel that way. My point is this: getting back into the community works both ways. People were great to us when our whole ordeal was going on, that is for sure. But now, we feel like outcasts, and we really are. So, now it is 5 years since Yossi was first diagnosed and 2 years since he relapsed. Those 2 years feel like 2000 years! If Yossi would have survived, he would be considered cured now (from the original diagnosis). I will always question why he had to suffer so much for nothing. I know he didn’t see it that way, but that is what it amounts to. Cancer seems to be all over the place these days, kids and adults. It is out of control. Not enough is being done to combat it, especially for kids. I saw a few episodes of a show on PBS called Childrens Hospital. What was good about it was that it showed the truth about what happens. Kids died. Most of the time the media only shows the success stories. The show was a documentary, so it was very real. I was fascinated by the shows I saw, as were the kids. I really felt it wasn’t inappropriate for the kids to see this as they have already lived through it for real. The stories were full of suffering and sadness, but I would go back to that time in a second if it meant that Yossi was alive and had a chance. I said I would go back to it, but that is selfish. For Yossi’s sake, I would never wish him to be sick like that again. At the very least he is not sick anymore and not suffering. Life somehow goes on, although it is a daily struggle for all of us. I would love to be able to talk about Yossi all day to people, but nobody wants to hear that.
Yossi is still dead.
This update is very over-due, and it is being written by Mommy. It is probably going to be very long.
I have so much to say, and I am not even sure where to start. I guess I will start with an update on the boy’s high school. I have two cousins in CA, Marcia and Carole who are managing their late father’s foundation. They made a very very generous donation to the high school in memory of Yossi. Also, a bunch of people have made donations in honor of Shoshana’s birth. So the total I am looking at right now is about (get ready for this!) $19,426!!! How cool is that? I “only” need to raise another $5,500. I am no longer feeling so over-whelmed by this. I have several ideas that I am hoping to be able to do. I am just waiting for “board approval” of the ideas. It is also nice in a weird way to be discussing dedication ideas … when to have it, etc. As I know more, as always, I will update you all.
People continue to wonder how the kids are doing. I have always worried about how they will be. I have met so many wonderful people online at so many different sites. It continues to amaze how many people out there have lost a brother/sister/niece/nephew/etc and share their stories with me. I guess it does give me some comfort to know that the kids will not forget about him anymore than I will.
Goldie is now in 7th grade, which is the last grade Yossi made it to. He obviously didn’t survive the year. *sigh* Goldie is sitting in Yossi’s seat in language arts. She also got his book for civics. In the front where you write your name, it has Yossi’s name twice. Then two of his friends wrote messages that say “We miss you Yossi” and “We love you so so so so so much”. She picked his seat on purpose, and she also thinks that Mr. Lewis gave her Yossi’s book on purpose.
Two weeks ago, Goldie found the book I made for Chanie with Yossi’s life story in it. (She had asked me so many times to tell the story of how Yossi died, and it was very hard for me to repeat it. So I finally wrote it down for her with pictures.) She wanted that awful picture of Yossi near the end in it. I have no idea why. Anyways, so Goldie came in and asked Michoel, “Why did Hashem make Yossi so happy here and so awful here?” She then went to her room crying. Michoel was not doing too well himself since he just had another one of the dreams where Yossi was in it. There are just no answers. I have been exploring and trying to find some answers. It has taken me quite a while to realize that I may never find an answer to what I am looking for. It is going to sound weird, but I am not looking for why me or why Yossi. I am looking into the reasons for suffering. But all the so called explanations I find are for why this person suffers the loss of a job or a sickness or infertility, etc. I can’t find an answer to why do we as parents have to suffer the continued pain of the loss of a child. I guess it is the continued suffering that I looking for an answer to. I was thinking that maybe Hashem wants us to be more motivated to do things. I know for myself that sometimes I don’t feel like bentching (the grace after meals) or praying, or whatever. But then I think to myself, I want to make Yossi proud of me. I picture him with his “friends” (other souls who are hopefully great tzaddikkim [righteous people]) all sitting around and learning and whatever. I personally think that Yossi does know what is going on down and what we are doing. I just want him to be as proud of me as I am of him.
Shoshana’s birth has proven to be very cathartic for me. (I’m am not sure if that is the right word to use!) I found that the day to day care of her is taking a lot of my time. She is bringing some joy back into my life. While the pain continues to be there, there is some happiness mixed in. That is not to say that I don’t still have bad days. As one of my bereaved moms said to me, the lows are just as low, they just come farther in between the good ones. It doesn’t take much to set me off. Hearing one of his friends speak, and they have begun to have those deep voices. The pain of not ever hearing Yossi’s voice mature. Seeing his friends with new friends from the boys high school, and wondering what life would have been like had he lived. The pain of knowing that Shoshana will never know her brother the way we do. Even the simple Shoshana is number six, and yet I only have 5 living kids that I care for. (I feel like such a phony when people think I am amazing for taking care of 6 kids when I only have 5 living kids here.) I look at pictures and wonder, would Yossi’s face be slender or would it still be puffy? I guess it is the not knowing that is so haunting.
I just finished reading a book when the 3 woman have a chance to go back in time and relive 3 weeks of their lives. They can then choose whether they want to keep their new lives or their old lives. I figured I would go back to when Yossi had his first transplant, and demand that they give him the surgery then. I figured it would save him from relapse. Michoel says that no doctor would do it. But don’t some women have their breasts removed to prevent cancer? I don’t know. I don’t know at what point I would change anything I did, except spend more time with Yossi. Talking to him and really listening to him. I wish I had more of his writings. I would have saved everything he wrote when he was in 6th grade. (At the end of the school year, he asked if he could just dump his back pack straight into the garbage. I was so happy not to have to deal with the mess, and told him yes. Well, I don’t have any of the writing assignments he wrote that year! What a waste.)
I really wonder what I am supposed to get out this. I don’t feel like I am a “better” person. Actually, it’s the opposite. I think I have become a bitter person. We watched a movie last week, and I commented at the end, I would have liked the movie better if the kid died. One of the most frustrating things for me right now is my lack of patience and my ungratefulness. I really do have so much to be thankful for. My husband works, and I am able to stay home with my baby (or babies, depending on how you look at it!). We have a roof over our heads, food to eat, friends who care, and wonderful family. And yet I still feel so ungrateful because of the major piece of my life that is lacking. I also get so annoyed by little things. I know I shouldn’t sweat the little stuff. But my cup is so full that one little tiny thing just totally pushes me over the edge. Add to that the fact that some days I am so sad that it is almost like I am set up to fail. I still yell at my kids and get upset when they don’t listen. One bereaved mom told me to be thankful it’s only little stuff that is annoying me, and that really put it back into prospective. I sort of feel like, G-d, I have suffered enough. Take away all the pain and annoying things.
I have stopped my search to try and find an answer. I realized that there is no answer to the question I have. There are a lot of books (Jewish ones) on suffering, but they all address issues like losing your job, or infertility, or sickness. Not one book talks about why children die. And I can’t find an answer to why we have to continue to suffer the loss of our child for the rest of our lives. So I figure I should just stop looking. I had a thought this weekend that maybe G-d did it just to give me an incentive to do things, but I just can’t imagine that He works like that. (Sometimes when I am not motivated to do something, I think that I want to make Yossi proud of me, and I do it. He is my push to do things most of the time.) But as I said, I will wait until G-d gives me the answers to my questions.
I really like when people mention Yossi, or even if they are not scared to acknowledge that someone is missing. I got a great comment a couple of weeks ago … “I know it’s not complete, but it’s nice to see your whole family out.” … meaning that this wonderful man was acknowledging that Yossi was not with us. If I could, I would have hugged him! So many times when we are out with all the kids, I want to scream to the cars, THIS IS NOT MY WHOLE FAMILY. I actually like going out with one or two of my kids not with me, because then it makes Yossi’s absence less noticeable to me.
I got a special “treat” yesterday. I was talking on the phone to a friend, and I mentioned how nice and sweet her son is. I also mentioned how grown up he is becoming, how his voice is starting to sound like a mans voice. She said, “I wonder what Yossi’s voice would sound like. He will forever be 12 to me.” Wow! It really impressed me. I am seeing more and more how people really do miss him and continue to think of him. I know it will not bring him back, but it does bring me some comfort to know that I am not alone.
I think also that I have come to the point where I realize that Yossi is truly not coming back. I have let the kids play with his stuff, and try so hard not to feel bad. He doesn’t need his legos and toys and stuff. I know he will come back with Moshiach, but he won’t want to play with his toys then. I still hoard his books and some of this other things as I get to them. (I had totally meltdown when I had to pack away his underwear. It took me two days to get over it.) I guess in some ways I am making some progress. But it’s not like a cut that will heal with a faint scar. I think that this is more like a horrific burn where the skin is grafted back on. A burn victim is always left with horrible scars that never completely heal. I still have a huge hole in my heart. I just don’t wear my heart on my sleeve anymore. I don’t have this compelling urge to share Yossi with everyone like I used to. I would still like to write a book about his story one day. But for now, it is too painful to revisit those memories.
That is it for now. I am tired of typing. Please pray for Chizkiyahu Yoel ben Zelda Yitta. His cancer is so bad that even the most optimistic doctor has refused to give anymore treatments. I guess I understand a little more why the doctors become so cynical and don’t have hope. I hear so much hope in my friend’s voice as she tells me about how stable he is. I see death lurking and feel terrible for being so cynical. Why can’t her son get the miracle that I hoped and prayed for? Because each and every kid that I have seen who relapsed or had it bad died. Not one kid got the miracle. I know the horrible pain she is about to go through. I have walked this road with too many kids, both before Yossi died and after.
Well, I told you this was going to be long. I have some great pictures of Shoshana that I will try to add to her picturetrail album. I also want to add her birth story to her page. Finally, I told the kids that if they write a book report for me I will put it on their pages. (They can trade a book report for chores. We have been hanging out at the library and they got a ton of books recently!) So that is something else to look for in the next couple of weeks.
I know some of you tried to click on the November 19th update. Michoel took it off because he did not like it. My cyber friend Rachel took a picture of Yossi and put a picture of Shoshana in his arms. (She did it on my request.) I really love it. He doesn’t like it because he wishes so much it was true.
The next part of that update was the fact that Chizkiyahu Yoel ben Zelda Yitta passed away, and if you are saying tehillim for him you should stop. He turned 21 that week. *sigh*
Last night I went to the ice skating event Chabad put on. I only went for my kids. (I had bought the tickets last week, but was thinking of considering it a donation if we didn’t go.) The kids were very upset when we said we weren’t going, so I went. I was really upset, almost on the point of tears, just missing Yossi so much. Not even so much for the fact that he would have enjoyed it, just the plain fact he isn’t here. As I walk through the door there is a mom who I haven’t seen in the longest time. She is nice and sweet woman. So she said to me, How are you? I am past being angry at the question. I have come up with what I thought was a decent reply … “I am having a bad day”. I thought she would leave it at that. No, she asked me what was wrong. So I said again, it’s just a really bad day today. Then she asks, what’s wrong. So I said, my son is dead. She said, “other than that, everything is ok?” I was in such shock. Other than that???? Isn’t that enough to ruin any day????? Then she tried by saying, but you have a new baby. Ok, so Shoshana is a replacement. I knew people were going to think that. I said but sometimes it isn’t enough or something like that. I was upset. I felt like it was so insensitive. So I spent the rest of the evening talking with a good friend. She told me that I have to let go of my anger. I will become bitter if I don’t. I don’t agree. I think if I say I am having a bad day people should just leave it at that. She kept telling me people don’t want to hear it. I kept saying that I am too honest and too open to put on a mask and say fine when my insides are completely broken. I don’t know who was right and who was wrong. I think that I can say how I feel is someone asks. Another friend who joined in the conversation said that they are not asking me how my emotions are, they are asking for my health. I still say, my heart is broken. Yeah, physically my body is fine, but still, my heart feels like it is smashed and stomped on. Since I am only seeing this through my glasses, if you have an opinion, you can email me. But I just realized that no matter what anyone says, I am still going to feel the way I feel. BTW, we did talk a lot about suffering. I do not expect the world to suffer along with me. I just expect the world to acknowledge that I still suffering. And I know that when I answered the woman, I didn’t say it bitterly. I said it with great pain and tears in my eyes.
Yesterday when I came out into the family, Yossi was laying on the couch. I freaked out for a second until I realized it was Shauly. I teased him about it. Then today, the same thing happened. I asked him how he felt about looking so much like Yossi, and he said he liked it. Last night, the rabbi who was running the program said over the loud speaker, “Happy Chanukah Yossi Paley.” I was happy about that, thinking someone remembered, until I heard a little voice say, “Shauly”. The rabbi mistook Shauly for Yossi. I hope that people don’t continue to do that, as Shauly needs to grow up to be his own person, not follow in someone else’s.
The last night of Chanukah is exactly two years to the day that we found out the chemo for Yossi’s relapse was not working. Not exactly a happy day, huh?
I know that this is going to sound really weird, but I really think that I am more connected to Yossi in his death than I was in his life. I think about him more now than I did before. He is now such a part of me. All my kids are, but he is so much a part of who I am now. I guess I can’t explain it to people who have not lost a child. But I know I had this conversation with another bereaved mom, and she felt the same way.
I am debating about participating in the NCCFs St. Baldricks day. If anyone in the Richmond area is interested, please email me. If you live outside of my area, you can email NCCF directly and they can get you in contact with someone there who is doing it.
Happy Chanukah. ~ Leah
Leah here, again …
It seems that I always write the best updates either on Shabbos or when I am lying in bed late at night. Of course, when I sit down at the computer, they have all flown out of my head.
For a long time now, I have been very uneasy. It is very weird to say this, but I haven’t had a horrible-terrible-why-did-I-get-out-of-bed-day in a long time. This is not to say that I don’t miss Yossi a drop less than I did a few months ago. It just means that Shoshana is taking up so much of my time. Or maybe that I have become adjusted to the fact that my precious son is not coming back? I think about him all day. I think about him and wonder so much what he would sound like and what he would look like. I try to picture in my head his voice, and pretend he is arguing with me about doing chores like his siblings love to do. I wonder how he would have fit in with the boys in the high school. What position would he have played in basketball? Would we have had Shoshana if he hadn’t died? Would we have moved to MN to be closer to his doctors there? I have this strange desire to write a science fiction story. There are really no Jewish science fictions stories that I know of. My idea is this … suppose you had a time machine. Suppose you went back into time, and “kidnapped” a person, and brought him forward in time. What would happen??? I figured that if I went back, and kidnapped Yossi right before he got sick, I would have spent the last 5+ years wondering were he was. And then when we came to this time, what would happen? I would have a 9 year old son instead of an almost 15 year old son. Would he still get sick? Would I know to save him? Just some weird thoughts I kick around in all my spare time. *grin*
I have really and truly given up cake decorating. No go back now. I auctioned off all my stuff on Ebay. Well, most of it. I saved a little bit of stuff to be able to make cakes for the kids. But that is it. For me, a very big part is the commitment part. I just don’t feel capable of living with a deadline. I know, I make Shabbos every week, and I get it done. I manage to pick the kids up from school most of the days on time. (OK, so a couple of times I was a few minutes late.) I just feel that I can’t commit to something like that. And I have TERRIBLE memories of doing all those cakes when he was first diagnosed. Tonight I prepared to list my Mail Box News magazines, and I went through the box I have. I won them right before his relapse. I never even opened the box, until tonight. As I was listing the dates of the magazines, I realized that I don’t even care. I only saved the magazines that have my pictures in it.
So, even though I said I was doing as well as a bereaved mom can, I still feel a sadness starting to descend on me. I had been pushing Yossi’s yartzeit (anniversary day) off in my head for as long as possible. Maybe that has something to do with my attitude of late? Anyways, for the last few days, I have been reliving the last few weeks. Every horrible aspect of it. My mind does not rest at night. It keeps throwing me back into those horrible days. I am truly dreading Jan 23. I just don’t want it to happen. It should be one of the happier Yossi-days. He should be here with us celebrating his 5 year post-transplant day. Then right away, Feb. 8th … the last time I spoke with him … the last time I heard him tell me he loves me. Finally, losing all hope, and knowing we were losing him.
Going to call it quits tonight, and head off to bed.
Leah here, again … and I am so angry!
(First of all, when I get mad, I make typos, so please forgive me!) President Bush announced that he plans to give 15 BILLION dollars to Africa for AIDS research. AIDS is a horrible disease. It needs a cure. But childhood cancer needs the money too! These are our children, American children. 100 kids a year here in America die from AIDS while approxiamately 3,200 die from childhood cancer. Childhood cancer is one of the few cancers that is INCREASING each year. And yet childhood AIDS research gets 15% more money than childhood cancer does. THIS IS MY TAX MONEY the president wants to send overseas. Oh man, am I ever sorry I voted for him. I have already emailed him, and you can too. It is so easy. Write to him at president@whitehouse.gov. Tell him you do not want our money going overseas. Tell him you do not want another child dying. Ok, enough said about that!
Last week was a hard one. January 23rd came and went. No big party (seudas hadah, a meal of thanksgiving), no celebrations. This should have been 5 years post-transplant ... cured ... party time. Instead, nothing. Emptiness. You know what I miss most about Yossi? Connecting with him. Listening to him tell me about the stories he read. Telling me about his day at school. Knowing what he thinks about things. Seeing his drawings. While I continue to love him from where I am, I do not feel his love for me. Not physically. I miss those hugs. Those kisses. I miss rubbing his bald head. I miss sitting on my chair and reading while he is on the couch reading. I miss seeing him grow up. I just plain old miss him.
For Yossi's yartzeit I would like to have a speaker come in and speak to the high school boys. If anyone knows of someone who would like to do it, please email me ASAP. I would love someone who knew Yossi. The yartzeit falls on Feb. 17/18 this year.
For Yossi's English date, I am out of my mind. I am organizing St. Baldrick's day. For those of you who do not know what it is, I will tell you. People volunteer to shave their heads. They get others to pledge money to see them take it off. You can find out more by visiting their site at St. Baldrick's Day. If you can not part with your hair, please sponser some one. And if you live in my area, PLEASE HELP ME! I am very overwhelmed by this. I need people to get the word out and to help with other details. Please feel free to email me, even if you are not in my immediate area. We have people coming here from across the state.
Ok, gotta get some sleep. G'night.
Leah typing yet again, forgive the typos as always. (I think faster than I can type!)
Snow, snow, snow. After Shabbos we check the internet, and we are supposed to get 12"-18" of snow. So many times we have been told we would get a lot of snow, and then when we get 6 or 8, it seems like a rip-off. So, I decided not to believe it. Of course, as the night went on, our snow totals went down. In the end, we got a lot of sleet, but no snow. It was sort of depressing, since once again, EVERYONE got a ton of snow but us. (We happen to love the snow.) Well, actually, I am sort of relieved we did not get snow. We got so much snow back in January 2000. Yossi (A"H) and I had a blast. We were up so early in the morning. It had to have been before 6am. (Anyone who knows me knows I am soooo not a morning person. Yossi also liked to stay up late.) We kept running outside with our big yard stick and getting various readings. We would average them out and keep track of the storm. He and I had so much fun. In fact, even Michoel's work closed, and we all went out and played in the snow. I think snow sort of got ruined for me in MN. There was a very big storm before Yossi's transplant. I told him it was snowing, and he said, "Big Whoop, I can't go out and play in it." I think he was feeling down about being inside. Anyways, the last few little storms we got made me feel bad since Yossi isn't here to share the snow with me.
I am also sort of relieved because Monday night/Tuesday is Yossi's second yartzeit. If we had gotten that kind of snow, I am not sure I would have been able to get down to the cemetery to see Yossi. We are hosting a siyum at the boy's high school here. I do hope that anyone who reads this site regularly and is able to will join us. It is open to the whole community, and that includes the internet community as well. It will be at 11:00am at the "old" RTA on Tuesday, Feb. 18th. (Email me for specific information.) I still have to do the shopping, and I hope it is not too hard to do it tomorrow!
Yossi's second yartzeit. How amazing. 2 years. It seems like it was so much longer. While I feel like I have made a lot of progress, I still feel like time drags on. I feel like each minute is bringing me farther away from Yossi. I feel like memories are fading. I know I never stop thinking of him. Most days I can think of him and I am fine. Shabbos was hard. I was missing him and crying more than I have in the last few months. I guess it is the yartzeit.
I will post more after his yartzeit. I do hope if you are close enough to come you will think of joining us.
I can't believe that it has been two years since I last got to hold my son. Wow, I was doing fine until I sat down and started reading my emails, and now I am totally overwhelmed.
Yesterday, I held a St. Baldrick's Day celebration. We had 12 people shave their heads to raise money for childhood cancer research. As of right now, it looks like we have $4,700!!! We had 14 people total shave. ~see pictures here~ I got great help from NCCF. We got donations from various food sources, so there was tons of food to eat. The only thing that was not so great was that I didn’t have as good as a turn out as I had hoped. (We had about 50-75 people there.) I know the problem was that we had fantastic weather. The sun has not been out in forever here, and that with the terrific temperatures was a gorgeous day. I guess people did not want to be in the mall. I am thrilled with the amount we raised. It is fantastic that people who do not even know a child with cancer are willing to help and support this cause. (It is not too late to donate. Just go to their site, listed below.)
Today, I went down to the clinic where Yossi was treated. Well, it is the same group but a new location. They just moved recently into the new building. The clinic is gorgeous. Murals on the wall and nice wall paper. It is such a happier place than the old clinic. Isn’t it sad that I wish Yossi was still here to enjoy it??? That is one of the reasons I never wanted to go down. I don’t want to feel jealous of the sick kids. I brought the left over soda and cake to give to the kids. I had a bag of little skinny pillows I had made. The kids put them under their arms when they are getting IVs. I also had a few toys I had bought for the procedure box. (After the kids have spinal taps or bone marrow aspirates they pick out a toy.) Finally, I gave the last of the hats we made. It was hard seeing the doctors and nurses, and feeling like I did not belong there. The next stop was the cemetery to "visit" Yossi. As I said, I was fine until I got home. My inbox is full of loving emails. It amazes me how people continue to remember him!!! I would love to thank each and every person, but I am just too overwhelmed.
I want to share two letters I got today. The first one said: “…Reading again, how both of you, while frantically not wanting to let go of Yossi a'h, also just didn't want him to suffer any more, reminded me that a parent's love can be so strong that they are big enough to want to let go of the child, and suffer themselves, rather than have the child suffer further. No one has ever returned to report back to us on what it's like 'up there', but, if those who have moved on can see us, then I know that Yossi would want to see you enjoying his sibs and would not, from everything I've heard of him], consider it a lack of missing him, for you to find comfort in the others... Be well. …” and the second one is about the book Yossi is mentioned in -- “ … Last night I started reading a new book. I read a lot of novels, don't remember much, I think some nights I just turn pages but it helps me fall asleep. a lot of the books I read are shoot ‘em up, spy type things - my husband and his work buddies recycle. Last night I cracked open a new book (Last Man Standing by David Baldacci) and read the dedication - this book is dedicated 'to the memory of Yossi Chaim Paley - the bravest young man I ever met'. Knocked me for a real loop, reading that did. I don't remember hearing this story Leah......Reminds me that when my sister had to write the dedication for her doctoral thesis she dedicated it to Sarah. I know this particular volume will only be read by researchers (history) in the deep dusty archives of academia but it meant a lot. Well I should go now - just wanted to let you know that my thoughts were with you. …”
Thank you again to everyone who took a minute to write to us and remember Yossi. I love you, Yossi!!! I miss you more than words can say. ~ Love, Mommy
Happy 15th Birthday Yossi. I love you more than you will ever know. ~ Love, Mommy
"No day is ever "easy"..but somedays are more difficult than others and today was by far one of the most difficult and most challenging days I've had since Jordyn died. Does it get easy, no. Does the pain go to the back of your mind at some points..yes. Happiness comes but sadness looms around. You keep living day in day out..but you never forget. You never forget that beautiful little girl that made you feel love like you'd never felt before. You never
forget the pain or heartbreak you felt the day she went to God's arms and
left yours. You NEVER forget the days in between that she lived to the
fullest. You never forget the days and weeks and months after she left and
you walked in a daze only concentrating on breathing, because anything else
hurt too much. My life will never be the same and it's because of a little
girl we named Jordyn Ashleigh Fitzpatrick.
Jordyn Ashleigh Fitzpatrick
March 30, 1998 to May 8, 2000...2 short years a lifetime of memories. Dx Acute Myeloid Leukemia March 24, 1999 w/CNS invovlement BMT 11/19/99 Relapsed 2/1/00 Jordyn’s site ~ Christy Fitzpatrick"
Last week was Yossi’s Hebrew birthday. He would have been 15. If anyone is still saying his chapter of tehillim, please change over to chapter 16 now.
To mark this special day, I wanted to do something special. I had thought of going down to the hospital again. But more than anything else, I really wanted to do something for Yossi’s friends. Those were the people who meant the most to him outside of our family. Monday night I was speaking with my friend (whose son was Yossi’s best friend). I told her how I had always wanted to make one of Yossi’s favorite dinners for them. (I have a tradition in my house where the birthday person gets to pick whatever they want to have for dinner.) She encouraged me to go ahead and do it. So, I plunged into it. I called the boys the next day, and invited the 3 of them to my house. Next, I had to run out and buy the actual food. I had no idea how much 3 teenage boys eat, so I just guessed big portions. After I picked my kids up from school, we went down to the cemetery to see Yossi. I had debated on buying him a balloon, but I figured that if I did, it would be like a flashing sign that screamed “STEAL ME” to the people who live in that area. When we got there, we all said Yossi’s new chapter of tehillim (as well as his old one). We then sang “Happy Birthday” to Yossi. Chanie was pouting because I didn’t let her hold Shoshana while we sane. So I told the kids we were now going to sing it in Hebrew, and Chanie should hold Shoshana. She was so happy! Next we let Sruli hold as we sang yet again in English. I held her, and then Shauly did. (We were going around in order, as we had gathered around his grave to surround him the best we could.) Next Shauly and Sruli ran off to go back to the car, and Goldie, me, and Chanie all stood quietly around him. I really wanted to have a few minutes to myself, but Chanie then asked me for some private time with him. I told her that was fine, and we all went back to the car. I was very surprised to see she spent a few minutes with him. I was also happy.
Once home I rushed into gear to cook for the boys. The kids asked if I was going to make a cake. I hadn’t thought of that. It brought back memories of the last time I made a quick cake for Yossi’s 12th birthday. I didn’t make him a real party that year. I told him that he would have a big one the next year, and he was fine with that. For dessert on that night, I made him a recipe that I have that you bake the cake in the same pan as you mix it in. Goldie wanted to make that one, but I just couldn’t do it. Instead, I found some Duncan Hines brownie mix in my cabinet that I planned on making.
When the boys arrived, dinner was just ready. It was sort of awkward in the beginning. We were all a little uncertain of what to talk about. But one of the boys is really outgoing, and he started talking about Chai Lifeline and the retreat his family went on. (They have a sick child also, but thankfully not with cancer.) That was the best opening, and soon we were all talking and having a nice time. At one point, the boys told me a cute story about Yossi that I didn’t know. It was really nice for me to hear what the boys were up, and to spend some time with them. Ironically, I had always had a hard time when I saw them together because it emphasized to me what I had lost and what was missing from their group. This time, it helped to comfort me as I was missing Yossi. It felt so right for me. The only really hard part was after the meal, when we bentch (grace after meal). The boys are all over Bar Mitzvah, so there is a special part to say. It always hits deep when I hear this part of the bentching, since the year before Yossi died we were talking about how we would finally have a mezumen (group of 3 men of bar mitzvah) when my in-laws were with us. Michoel had a hard time with the whole meal, and I felt very guilty afterwards that I put him through it. For me it was just so comforting to be with them. The mom I had spoken with the night before told me her son came home and said two things. First, he liked the spaghetti and meat sauce I had made. (He doesn’t usually like meat sauce.) Second, he enjoyed talking about the “good ole days” with us! She thought that was a hoot since he is only 15 and the good ole days are happy NOW.
On the plane home from St. Louis (were we went for Pesach), I was speaking the woman next to me. She asked me the ages of my kids, and I really did not want to get into it with her. I just told her their ages. She said I did not look old enough to have a 15 year old. I told her I don’t feel like I have a 15 year old. What a riot! It is so true. I do not feel like I have a 15 year old, since I have never mothered a 15 year old.
Right around Goldie’s birthday, she will hit a milestone I have been dreading. She was born when Yossi was 26 months old. So she will have lived longer than Yossi did age wise. She will be 13, the magic age Yossi never made it to. And while I do want her to reach this age, I want Yossi here to continue to be older than her. It seems to me that I live a life of contradictions. One last thing off the topic of Goldie but on the topic of contradictions. Michoel summed up Shoshana’s birth beautifully. He said that the joy of Shoshana’s birth does not take away from the pain of Yossi’s death, and the pain of Yossi’s death does not take away from the joy of Shoshana. She is a super big comfort to me. She is the bright spot in my pain. I am so thankful that Hashem has given her to me!
The other kids are doing well. I think it is good we talk about Yossi. Sruli recently was tested, and I was told that he needs grief therapy. Why? Because he still talks about Yossi. I was very pleased when they told me this. I want my kids to remember him and talk about him and keep him a part of our lives. Actually, the woman doing the testing had the gall to cross Yossi's name off when I was listing the siblings. I called back the next day to tell her it was in very poor taste for her to do that. (In one ear and out the other.) Shoshana recognizes Yossi. We have his picture up on our computer as the desktop. Each night when I shut down the computer I say, "Bye-bye Yossi. Bye-bye." And she waves bye-bye to him. I have the quilts that I made. One of them sits on the couch where she smiles at it and hugs it and gives it kisses. Not the same thing as the real thing, but it is as close as she is going to get. And we still go once a week to visit Yossi.
This school year is going to be another hard one. Yossi was diagnosed in 4th grade and died in 7th. This past year Shauly was in 4th and Goldie in 7th. Now we are back to the same thing as the year he died. I have 4 kids (KA"H) going to school. I was so happy and proud back in 2000 to be having so many kids going to school. Then Yossi died. Now again this year, we will have 4 (IY"H). Also, Goldie is graduating. I am totally dreading that. I get a whole year to think about this. It is sitting very heavy on my heart.
So basically, I am in a place I never thought I would get to. Yossi is never far from my thoughts. Even when I look like I am fine, I might still be thinking of him. But that burning desire to tell everyone I have a dead kid is not there. The need to shout it is buried deeper inside. I guess I am doing as well as can be expected. Michoel, on the other hand, is doing worse. I will leave it to him to update when he gets a chance.