I Would Certainly Die For You, But Can I Live For You?

There are so many songs and poems about dying for someone we love. Perhaps that is difficult, but not the most difficult. My struggle is living for the one I love. 

I spend many hours a day sitting with my husband. We talk, listen to lectures and music or just sit quietly. That is the easy part of the day. Walking out of the room and into the world is the hard part. He wants me to enjoy life, to grow and to experience more. I want to do that with him. I was never the type to adventure by myself, we did everything together, and always dreamed of what else we would do once the kids are a bit older. I tried doing some things with a friend and I would put on my brave face, and then the second I come home go running into his room crying.  It wasn't my friend's fault, she is just not Yitzi.  It's even harder when well meaning people tell me how brave I am to go out by myself, please don't remind me that I am by myself. I must be very stubborn to be still holding on to option A.  (I heard this term from Sheryl Sandberg who lost her husband and had to try option B, to raise her kids and live her life without him) I try to find things to do in his room. I painted a table last week, that was fun. When he has physical therapy, I do Pilates. Perhaps I will try guitar lessons, he always wanted to teach me, we just never had the time. Yet there are many more things outside of his room. I have gone into the outside scary world and tried to "live" for both of us. Sometimes it feels miserable and sometimes I enjoy it. It always comes at a price of exhaustion. Like a vulnerability hangover. It takes so much energy to hold my head up and smile, even when I am really happy to be doing what I am doing, it comes at a cost. Recently I went to a very close friend's wedding. I was away for three days. I really was so happy to be at the wedding, to meet the family I have heard so much about, but the next day was so hard. To go from such joy back to our reality, to remember the dreams of our wedding, to imagine my kids weddings... 

I still think it is worth it. Experience joy and meet new people even if it costs a lot. No matter how much we would like it to, life does not stand still. On my birthday this year I wrote about beginning this brave journey of finding out how to live a good and productive life despite my circumstances. It's like a slow waltz with one step in one direction and then in another.  And let's just say, my dancing skills are laughable. My hope is that I will be able to function in both worlds adequately. With my husband in my safe place and out in the world, where our children are heading.  As the new year approaches, I look back at the last year and let's be honest, it was hard. Not the type of hard I have the strength to repeat. I am tired. I stood still for much of this year and my kids all moved forward. My oldest, who literally saved me much of the year, has left to Jerusalem. While she learns and grows, she will be praying in all of the most holy sites we have daily. She is so brave and positive. Always happy and loves to make others happy - just like her Daddy. My other kids are getting older and learning more and are thankfully, really good kids. I have been so blessed in so many ways and I am so grateful to G-d for what he has given me. But please G-d, make this year better then last year. As much faith as You have in me, I have more in You. 

May we all be blessed with a good and sweet year. Yitzi always says that sweetness comes from having what you need. Being healthy, having resources to care for your family, and having family to care for. May it be so sweet. 

My Journey Back in Time

A few weeks ago I went on a most amazing trip. I went with Miryam Swerdlov and her girls camp and a group of women to spend one week in Ukraine touring the grave sites of the early Chabad Rebbes. For me the trip was intensely emotional and very personal, and at the same time I shared all that with 70 people.  Before the trip I did not bother to find out who else was going, it didn't matter, I had to go. Once on the trip, it was because of who was there, that it was such a unique experience. Friendships that will last a lifetime and girls that have so much energy, talent and heart. It surprised me how much we enjoyed each other. I cannot give enough thanks to the  teachers who taught us all about the lives and teachings of who we went to. Because of them, we felt connected to the Rebbes and familiar with their stories, making our prayers there much more personal, we were talking to someone we know.
The highlights of the trip for me were being by the Alter Rebbe and Shabbos in Mezibuz, by the Baal Shem Tov. The Alter Rebbe was very intense. I was overcome with awe and severity. It was the first Rebbe we went to see, and it was as if the dam holding back and limiting our emotions exploded. We sang the Hachana Niggun followed by the Alter Rebbe's Niggun. We then read our Pan Klalis and then our individual Pans. There was not a dry eye around. Young girls with lists that take an entire page packed with tiny writing. It struck me as sad that at their age they are so aware of all the pain in the world. Not just aware, but heartbroken. How they cried when they read my husband's name without even knowing that I, his wife, was right there. I am constantly shocked and comforted when I see people who I have never met, that daven daily for my husband. But watching these girls heartbreaking cries? That was something else. Not only was I watching, so were our Rebbes. If to my tired human eyes, this was so obvious, I'm sure it was even more beautiful from where they can see us.
As awestruck as I was in Haditch, that's how incredibly happy I was in Mezibuz. Much of the city looks unchanged for the past few hundred years, so it really matched what I imagined it to be. The Baal Shem Tov came into this world at a time that was very hard for the Jewish People. He picked us up from the ground, polished us and taught us how much HaShem loves us. He did this with joy and with love (so naturally, I think of my husband).  In my understanding, the Baal Shem Tov is the source of joy, specifically serving HaShem with joy. All of that is felt tangibly in Mezibuz. Another thing the Baal Shem Tov is known for is the miracles that he performed. Being there made it seem like everything is possible. We sang and danced and listened to very inspiring words of Torah late into the night. I must remind you, I am not a teenager anymore and just being able to function on so little sleep was a miracle.  Shabbos morning I was woken by the crow of a rooster! Of course I slept through his initial ten wake up calls, but it is all part of the untouched beauty of Mezibuz. Again we sang and danced. We shared words and stories, and we shared ourselves. For Seder Nigunnim, towards the end of Shabbos, we went to the Baal Shem Tov's Shul. The actual Shul was built in the 1440's long before the Baal Shem Tov, and was destroyed by the Nazis. What is there now is a beautiful replica. So here we are towards the end of Shabbos -the Baal Shem Tov's time, in the Baal Shem Tov's Shul, singing songs of each Rebbes following the Baal Shem Tov. Again singing and dancing and hearing stories and words of Torah.  The energy from our group was so beautiful, I know I will remember that feeling when things are hard. Throughout Shabbos a question kept coming up. How will we take this experience  home with us  and make sure it doesn't fade like a memory?  I'm sure that we all had slightly different experiences because we are all slightly different. The thought weighed on me quite seriously. How will I make sure this trip changed me?  When I get home will things be different?  Is it a possibility that my prayers were answered?  If they were not, will I make it?  How can I take this joy and hold it tight in my heart, so I can find it when I need it?  On my way home, just as on my way there, I stopped by the Ohel. I wanted to express my gratitude for being able to share this experience. I told the Rebbe of my personal Hachlotas I made on the trip for a daily reminder of where we come from and who we are part of.   I told the Rebbe all about his Chasidim,  and how they are following in his footsteps.
I came home to a miracle but not the ones I davened for. My husband who was well taken care of, was smiling and beaming. The week I was gone, over one hundred people visited him. He was not bored and definitely not lonely. He was so happy that I had this opportunity and so grateful to all of those who made it possible, especially Miriyam Swerdlov. The other miracles, well they may just take a little longer.

I am including two entries I wrote while on my trip.

Today we went to a sanitarium where the Rebbe's brother, who was not well was living. In 1940 the Rebbe's father was taken prisoner and the Rebbe's mother, Rebbetzin Chana was faced with an impossible choice. To go with her husband or stay with her son.  I believe her son was by then in his thirties and partially paralyzed.  Rebbetzin Chana knew that if she stayed with her son, she may never see her husband again, and if she went with her husband she may never see her son again. She went with her husband. In 1941 the Nazis came and massacred everyone in the sanitarium. Those who were not perfect enough to deserve life. Today there is still a functioning hospital there and recently a grave marker for all those killed there. Rebbetzin  Chana never knew what happened to her son. The choice between being with your husband or children broke my heart. In my small way, I make that choice daily, and I never know if I am doing the right thing. I imagine the sacrifice those before us had. The difficult choices that must have been heartbreaking. And because of those choices, we are here today, so thank you for your self sacrifice and I am crying with you. 


Today we went to Haditch, to the gravesite of the Alter Rebbe. The Alter Rebbe is the first Chabad Rebbe, the author of the revolutionary Tanya and my great grandfather many generations back. I woke up nervous, and was unable to eat much of breakfast. It took us 6 hours or so to get there. I may have cried the whole trip. I felt strongly that praying by the Alter Rebbe can bring miracles, but so far, I have not been worthy of one. It took me almost the whole 6 hours to come to a few realizations. Firstly, I am coming on behalf of my husband and he is most certainly worthy. Second, there is a chance that if I am worthy of my husband, I am quite worthy. Third, the 70 other women and girls I am with have an amazing collective energy, and pure hearts all praying with me. And lastly and most important, even if I am not, the Alter Rebbe is. By the time I got there, I was quite nauseous and feeling faint. I ran ahead, for one more minute of holding back was unbearable. I really poured my heart out. I took all of my sorrows, my worries and heartache, and some of my friends and families and I laid it firmly down for the Alter Rebbe to handle. The rest of the group came in, we learned some Tanya, and sang the Alter Rebbe's Niggun (song). I remembered my wedding when we also sing that song and imagined my husband and myself walking our children to their Chuppas as well. Then we all read a letter of request to heal those who need it, to give children to those who need it, to find spouses for those who need it, and to give livelihood to those who need it. There was not a dry eye among us. It was very powerful. When I left my shoulders were lighter, my heart was lighter and I felt happy. I know G-d is good and there is nothing beside Him. 

What Goes Down, Must Come Up

This entry was written on my birthday. I struggled for a while whether to put it out there or not. My frame of mind fluctuates as do my feelings. Some days are really hard and others are even good. For all of you going through hard times, I want you to know, we all have bad days. My current struggle is on finding my way without my husband actually by my side. I am not very brave and have always leaned heavily on Yitzi. All my dreams were going to be done with him. I am not the type to just try something new, and in order to survive there is a lot of NEW I have to try. So this summer I am on a journey. I only have one child home and a whole lot of time. As I begin this journey, I want to share the heartache that led me to this decision. Some people think that a bad day is illegal. Or a low mood needs to be fixed. I beg of you to stop. Life is a cycle and a healthy mind needs to reach a point on one's own in order to rise again. Sometimes well meaning words just make me feel that not only is my mood bad but I feel guilty about my mood being bad. As if it is unjustified. Let your friend know that you are there and that's it. People are amazing and on their own can rise above what even they thought was possible. To mark the 'before the journey', I am going to share my bottom of the wheel with you. Birthdays are days to check in and measure one year to the next. For me this was tortuous. I couldn't even bring myself to finish writing it. Just putting it in writing was depressing. Before I could finish, I saw a beautiful birthday wish Yitzi had posted on Facebook. Seeing that despite my agony, my husband thinks I am fantastic brought me somewhat up from my mood and thankfully unable to continue writing  as I was. 

I was hoping to ignore today. Let it come and go like any other day. the more I tried the more I realized that is not going to happen. I have always used my birthday to reflect on the last year and set goals for the new year, and that has me really stuck. This last year has been so difficult, I don't think I accomplished any of the goals I set out to. I am hesitant to make any new goals. Yet we survived this year. My kids are happy most of the time and growing up beautifully. My husband is an accomplished writer and teacher. He has a lot of beautiful visitors that fill our home with song and laughter, brotherhood and of course, Torah. So why am I so sad?  My heart is broken and although I firmly believe that Hashem can do anything, I find myself wondering all the time why he hasn't. I feel abandoned and not worthy. Little things bother me, and I am not so interested in other people's problems. I have always been a good shoulder to cry on and now I don't have patients for anything. When I see someone driving them self in a wheelchair, I wonder if they know how lucky they are. Some days I feel like I've become the person I dread the most, a bitter person. Most of the time, I am just fine, but hardly the person I was. I don't go out too much, it's too hard answering the dreaded 'how are you?' question.  I try and put on a brave face but it is exhausting. 

So here ends one year, and a new journey begins. Next week I will be joining a group of women traveling to Russia and Ukraine. We will be visiting the gravesites of the early Chasidic masters and pouring our hearts out. I hope to share with you all about it. 

Why I Am a Zombie

There are times when life is hard and that's just how it is. There are other difficulties which are unnecessary and on top of everything else, can drive anyone crazy.  One would think that my most significant problem is that my husband has ALS. We have 7 children from the ages of 8 - 18. They are wonderful and special and scared and hurting. Yes, that is the most significant problem we face, but not the most difficult.  We have a nurse problem. For the past 6 months the agency which we use (covered by the medical waiver program) has been canceling on us left and right. Some times they give us notice and sometimes they don't show up. Sometimes I find a replacement and many times I do it myself. That means up all night at least once a week and sometimes many more times. When we find a replacement it is out of pocket, and that is an additional difficulty. This week out of 14 shifts they are supposed to cover, only 6 are covered. We have been working with other agencies and in 6 weeks they still cannot find FOUR nurses. So  if you see me, and I am a wreck, be kind. If I forget parent teacher stuff, forgive me. If I can't remember if we've met before, just let it go. I am tired. My kids need me and not only is their father unavailable but so is their mother (insert guilt here). My problem is, this shouldn't be a problem. There are agencies that get paid to do this and they just don't. I am fortunate that I don't have to make a choice between feeding the family, paying medical bills and abandoning my husband. There are people who have to work to live and leave their loved ones alone and in great danger. Lucky me, I can just cancel everything and stay home. That being said, we have had some wonderful nurses, but the overwhelming majority are the most flakey, irresponsible people I have ever met. I could write a book of what we have endured the last half year. There is no reason for any of this. A few more dollars and personal accountability would go a great distance. If there was a database that all nurses are entered in, anyone can tell if they are reliable or not. If you don't show up to your job, you shouldn't be able to find a new one tomorrow. It seems like people have forgotten that they are dealing with human beings. I understand that the state would like us to send my husband to a home, and therefore make it very difficult to get proper care, but that is not the value system this county was founded on. Family is important, dignity is important, responsibility is important and of course, sanity is crucial.

Our Little Angel - Chaya

This week our special friend Chaya Shpalter passed away. She was one of the most incredible people I have had the pleasure of knowing.  She touched more people in her 11 years then most could. We loved her and we will miss her terribly.

Here I sit with my pen and paper, trying to put a broken heart to words. We moved into an apartment in Los Angeles just under two years ago. Right across the hall from Chaya and her family. Chaya and my daughter Chava became friends rather quickly. They got that life is full of challenges and there was no pretending here. They also got that being happy and positive made everything better and more meaningful. Chaya came over every Shabbos and became part of our family. When Yitzi came home from the hospital he was hooked up to a ventilator 24/7. Most of the kids were quite intimidated by this. Not Chaya, she just marched in with her beautiful smile to visit him. She came every Shabbos and together with my daughter sang songs and made dances for Yitzi. They called it their "show". Sometimes other little girls would join in, but always Chaya and Chava. When my daughters were not in the mood of entertaining my husband she would jump up and say, "Let's do a show!" She saw how tired I was and made it easy for the girls to spend time entertaining. We had to put my husbands beard in a pony to keep away from the tubes, Chaya walks in and takes one look. With a twinkle in her eye she says "Rockin beard". Yitzi twinkles right back at her. Chaya was not just my daughters' friend, she was my husband's friend and we all loved her for it.
For the past month, my kids have had the Chicken pox. I kept them locked inside so nobody else would get it and in the process, they couldn't see Chaya. We had no idea how bad things were. When we heard that Chaya had returned to the world of truth, we all cried bitterly. But no one as hard as Yitzi. He cried for hours and days. He cried out to HaShem "How could this happen?  Why Does HaShem continuously break us?"
I don't have words of strength or inspiration. I am heartbroken. But I am also so grateful. We got to know an angel.

Choose to focus on the good

This week the earth itself trembled. We watched tragedy unfold followed by the rise of the human spirit in a most beautiful way. People helping people. Racing over from countries far away to save lives, because it's the right thing to do. Opening your hearts, your homes, and your pockets for fellow members of the world. Fixing problems that need fixing because you can, and then praying for G-d to fix what you can't. The best side of mankind pouring forth.
In other parts of the world we saw less then the best parts. Destruction of people's livelihood, their city, and their safety. When you protest the loss of life by trampling on the lives of innocent people, you have missed the point. Lives matter period.
So why the difference?  When nature strikes, we gather together like brothers. We sacrifice our own safety for that of our brothers and sisters. We rise above our differences for a common good. When one man causes another pain, it divides us. We take sides and forget our common decency as our anger rises to the level of a raging tide that cannot be stopped. Not all of us do, but the ones that do are the loudest and the most destructive. We can almost think that it is everyone. But it's not. It's a few who are so angry, they lost their way. Perhaps we should choose to focus on all of those who are rebuilding, not destroying. All of the love going around, not hate. All of those giving to others, not taking from others. May this week be steady, strong, good, beautiful, bright, and full of love and good health. Shabbat Shalom.

The light that lies beneath the pain

Over the last few thousand years perhaps our souls have become enclosed and desensitized and have a layer or two encrusting it. As we are shattered time and time again the light begins to shine through. It is a painful process, and one we would rather do without. Yet the light is beautiful and inspiring. It is a holy light, a glimpse at G-d. A hint to what we will all be. A force the nations of the world are afraid of. They see it too and are fighting it viciously. But this light will never be hidden again. It will only burn brighter and stronger. With every tear we shed, our light shines brighter. With every hug we give, we dispel more and more darkness. Throw down your walls, your barriers, your anger. Lift your eyes to the heavens and know from where your help is coming. They say Shabbos is a healer. By lighting the Shabbos candles we add to the light in a most majestic and positive way.  Add light, hug each other, cry with each other and cry for each other.
To all of us broken people of the world, have a beautiful Shabbos. May we all become whole again.