Monday, December 28, 2015

A Day in My Life

Today is turning into a most unusual day. My housekeeper quit but I can't be sure that it's for long term or this week. I really wish I understood Spanish. My 2-10 nurse quit and while they are looking for a new one, they probably won't find one this week. At least I know I won't be spending all my time doing laundry. This is all very inconvenient yet a blessing. My housekeeper has become very unreliable and doesn't do a great job. While I know it will be a pain in the neck to find and train someone new, I think we will be better off. The nurse was from the company we contract with, I have no idea if and when they find someone if they will be better, but I certainly hope so. My daughters went off to winter camp for a week so I have more time and less guilt and I love spending time with Yitzi. All in all, I've had too many coffees today and I can't wait to have more. Did I mention my Shalom came home from camp today? Finally someone who loves kisses as much as I do.  I think I'm going to order boots on Amazon and have them gift wrapped. That should do it. Anyone see my coffee?

Sunday, December 6, 2015

Hiding in the Corner

Last night I went to my first Chai Lifeline party.  There were a lot of people there, way too many people there.  I knew very few of them.  They look like normal families, just like mine.  Occasionally you see someone that has obvious signs of sickness, but most were people you see every day and have no idea what they are living through.  My reaction took me by suprise.  I didn't want to meet anyone.  I could not bare the thought of all the pain, the fear, the struggles that everyone was going through.  I didn't feel strong enough to handle any of it.  So I did the only thing I could think of, I hid in the corner.  Yes, you heard me right.  I was too afraid to make eye contact for fear of seeing what I feel reflected back at me.  I actually shocked myself.  I did not expect to have this reaction and I'm sure that if Yitzi were there he would be talking to everyone, and I'm kicking myself for not being more like him.  Then this very nice lady says to me, "Are you hiding in the corner?". I answer affirmatively.  "Can I hide with you?"  Of course you can.  It was both of our first event and we were both a bit overwhelmed to say the least.  One of her daughters is battling Cancer and thank G-d, seems to be doing well.  We spoke for a while, we have friends in common, and I met three of her four lovely children.  I am not sure if she was really hiding or just being nice, but I was sad to see her go.  The room itself was super happy.  A lot of good food, art projects, loud music and dancing.  I did find myself dancing a little but still in my corner. The kids were having a fantastic time.  I tried to imagine how the volunteers of Chai Lifeline manage.  All I can come up with is that they are angels from G-D.  Their mission is to make the sad happy, the lonely feel loved, and the weak feel strong.  And if that is not possible, they will hold you up until you can stand on your own.  My next party will be different.  I will find the courage to step away from the wall.  These are not just people with pain, these are people with strength.  I hope I can be more like them.

Chai Lifeline is a non profit organization that helps families that are battling serious disease.  Look them up, they are amazing.

Friday, November 27, 2015

Thank G-d For The Lighthouse

There is a stormy sea of negativity out there that is so easy to get swept up in. Wherever you look it is raging. The sea is churning with hate and lies and is red from blood. It continues to grow stronger and stronger like a storm from hell. Then you see the Jewish nation. Who rise like lions above the sea, they sing and dance with their broken hearts and their smiles shining with the light of G-d. Defiant in the face of our enemies, forging ahead until the sea will split. The one beacon of truth and light in the world. The one nation that cries for those we have never met and dances together at the weddings of orphans. This is the army of G-d. We defend His honor vigorously despite how unpopular it has become.  We insist on living magnificently although that seems to bother many. We are the lighthouse available to all who look to find light. 

I find myself drawn to people who are so brave that they seem to singlehandedly inspire thousands. Who kill a terrorist while there is a knife in their heart. Who understand our collective pain as a nation and despite their own pain, invite the entire country to their wedding. And at the wedding? They shine with light and love and joy, although their hearts are shattered. To the people who give generously to their families to survive. It fills my heart with hope for tomorrow and my eyes with tears of gratefulness. What a holy nation. 

This Thanksgiving I have so much to be thankful and grateful for. I am a proud member of G-d's army, fighting daily to bring light, love, and joy into this world. I am grateful for this country that gives me that freedom and pray that this freedom remains strong forever. I am so grateful to our family and friends that shower us with their love, their time, and their energy. I am grateful for my beautiful husband Yitzi. He is my rock and my best friend. He has taught me how to live the best way possible, and encourages me to be courageous. My heart and soul are connected to his forever. I am grateful for my children who are so remarkable and kind and funny.   I am grateful to our nurses who take good care of Yitzi. I am grateful for music that heals my broken heart and wonderful people who bring it into my home. I am grateful that every so often I can be brave and help others thru their pain as well. But mostly, I am grateful to G-d, who loves us and gives us purpose and promises a better future. 

Sunday, October 25, 2015

What's In Your Coffee?

I can't remember when I started drinking coffee. I have always loved the taste and couldn't wait to grow up so I could drink it. My mother told me that it would stunt my growth and at the height of almost five feet, I just couldn't risk it. Sometime after high school I started. I never bought fancy coffee, in those days almost no one did, just taster's choice. By the time I got married I was a coffee drinker. Once married, Yitzi would make me coffee. Not that if he didn't, I was insulted, it was just one of those ways he took care of me. I don't sleep well so I am always tired in the morning and it also helped with the slightly low blood pressure.  When I got pregnant with my first, without saying anything, he switched it to decaf. It was a month before I realized and knowing that caffeine is not great for the baby I allowed it. By the other pregnancies, I already knew better. No tricks this time. I argued that I also had a responsibility to take care of the baby and then the babies. None of that would be possible without the coffee. I didn't drink a lot, just one or two cups of instant a day, and I wasn't picky, just don't buy anything that's not taster's choice. Yitzi experimented with flavoring along the way. A little cinnamon, some vanilla, caramel... They were all delicious but don't mess with my first cup. Anything after that is game. Eventually I started drinking more, the one or two didn't work that well, but how I drank it never changed. When I started it was with milk and sugar. Then we found out that sugar is the great Satan and I switched to Splenda. When Splenda went to the dark side, I switched to stevia. But I always had that sweet cup of coffee to greet me in the morning.  On several occasions I have tried to quit (usually before a fast day), but have never been successful. I remember calling my brother and telling him that in cutting down from four cups a day, I am now at six. 
In my quest to take better care of myself, I have cut certain foods out of my diet. Among them is milk and any kind of sweetener. My coffee is a disaster. It makes me want to cry daily. A few days ago I was telling a few friends that it was like a big delicious hug every morning for twenty years, and I miss it. I know that words have meaning and the words we choose to describe feelings are often very telling.  Many of us have emotional bonds with food, and it can evoke many feelings. My cup of sweet coffee is like a hug. It's not that I miss having my coffee just so, it's the man that always brought me the coffee. It is a hug from him that I miss. It's the way he made me feel cherished that I miss. After having a good cry on the subject, I decided not to belittle my feelings. This is hard, and I miss being taken care of and its ok to feel that way. 
This morning when I made my not delicious coffee, it wasn't disgusting, it was just sad and that's ok for now. Hopefully soon I will learn to enjoy the taste of plain coffee. After all, it's just coffee. 

Tuesday, October 13, 2015

My Soul Cries For Jerusalem

Listen carefully. Do you hear what I hear?  I hear the sounds of good people doing nothing. That's right, nothing. No outrage, no reporting, and no honesty.
When I was a child I had a reoccurring nightmare. I was screaming and nobody could hear me. I was waving people down and they couldn't see me. They were unaware of the terror I was experiencing and my cries were invisible.
Today we are living this nightmare. We are yelling from the rooftops and the world ignores us. How bad would it have to get to get your attention?  Raping women? Enslaving children? Or my personal favorite, sending your children to kill other children? Would you sit up then? Would you take notice? Would you get off your high horse of contempt? Would you sacrifice your fear of offending anyone and start saving lives? Would you venture out of you oblivious comfort bubble and see what a mess you have helped create?  Would you respect life and not color or religion. Would it be more convenient if we were an endangered species? What is your breaking point? When will it begin to bother you? When will you remember your younger self? The one that instinctively knew what was right and wrong. The one that would have done anything to make this world better. What happened? Did you get educated out of morality? Are you proud of yourselves? Do you realize what you are leaving to your children?  My hope is that they will be the opposite of you. Grow up with no hope for a better tomorrow and decide that that is not acceptable. Recognize the inherit right of people to live and that all those who would deny or destroy that right are just evil. Make a United Nations that is not just united in its hatred of Israel, and complicit in the slaughtering of hundreds of thousands, but one United in its goal of making this world safe and good.  

Footnote:  My blog is usually reserved for personal stories and thoughts on our struggle living with ALS. I thought a thousand times before posting something of this nature. I am a proud Jew living in America and I am scared. I wonder how we would get my husband to Israel if the threat to American Jewery would get more serious. I know I am not alone in my fears and worries. I have a son and daughter studying in Israel and like most of my fellow Jews, that is the home of my heart and soul. Given to us by G-d thousands of years ago, it is the Jewish homeland.  Today it is under constant attack and the silence is deafening. The condemnation is loud and clear. If I am silent because I am afraid of what you may say, I become the person I detest. The silent majority that allows all of this, and that would be unacceptable. If the truth offends you, you are not my intended reader, and who cares?Being offended is not the worst thing in the world. Being murdered is.  I write what I see and experience. I write the truths of our lives and for Jewish people,  this is the most important subject of our times. 

Friday, October 2, 2015

Healthy Inspiration

How often do you appreciate the opportunity to do a Mitzvah?  Because our bodies more or less work, we don't think about what a privilege it is to be able to shake a lulav, or eat in the Sukkah, or do many other Mitzvos. Today Yitzi went into the sukkah. It took over an hour to get him there, and when we got there I noticed he had tears in his eyes. He "told" me that it has been two years since he has been in a sukkah. So here I am wondering if and how it would be possible to love our Mitzvos as much as Yitzi does without the challenges he has. First of all we have to think about it and how fortunate we are that we can easily do what HaShem asks of us. Second of all, it has to matter enough to us that we feel a pang of envy when we see someone love doing a Mitzvah. And thirdly, we get to see people like Yitzi and be inspired and reminded that this is special. We have an opportunity to connect to HaShem. So now I ask myself, would there be a way if Yitzi didn't show me? Can we learn all of this from a healthy person who doesn't face these challenges? I am hoping we can, for if not it is necessary for there to be people like Yitzi. So how can we show HaShem it is not necessary. How can we inspire each other and take care of each other without severe circumstances?  How can we pay attention when it's easy? I don't have the answer but I think it is a key to healing the pain of this world. Healing each other long before we are this broken. Taking care of people before they fall. Until I figure that out, I am just going to follow Yitzi. He seems to know what he is doing.  

Friday, September 18, 2015

There and Back

Well friends, it's been a year. A year since we went into the hospital with pneumonia and came out with a tracheostomy. A year since Yitzi could communicate with his phone to the whole world. A year since he could drive anywhere in his wheelchair by himself. A year since I was enough to take care of him. 
We went into the hospital one way and came out totally different. The doctor told me that his life will be easier but mine would get infinitely harder. He told it to me as a warning, like a gentle question. "Can you handle that?" Of course, do whatever it takes. Thinking I understood what that means is like imagining you will handle childbirth. It was shocking. It took a long while to get used to this new life, for Yitzi, myself, our families and friends. The first month was a page out of a horror story. The next eight months out of a tragedy. The last few months have been good, thank G-d. What is good?  We are managing. We have reliable help, and there have been no traumas. We are steady and managing. The kids started a new year, life is continuing and we are taking part in it. Yitzi has mastered the art of communicating with his eye gaze computer and has more guest then most people I know. He has a very active social life and has found a way to balance all the changes he has been given better then imaginable. He is still a fabulous teacher, an involved father and a romantic husband. He learns daily and is as funny as ever. He even fixed the air conditioner this week. He told us the problem and how to fix it. He is annoyingly always right and if only my brain worked half as well as his does, I would be in pretty good shape. He writes me a letter every Friday, and writes the kids as well. He is in touch with many of their teachers and checks up on them weekly. I am in awe of him. When we got married, I knew how special and unique he is, yet watching it to this level is absolutely a marvel. That being said, I so miss the days when it wasn't heroic to smile and to laugh and to just enjoy the family. When it didn't take superhuman strength to do everyday things. When there was no clock reminding us to enjoy every second. When we were just us. Although we are doing the best we can, we long for the day where we can breath a sigh of relief. Where our hopes have changed from thoughts and prayers to actions and reality. Where we can speak to each other and sing together. Where we can dance and play guitar, where we can be like we were, yet so much better for all we have experienced. 

Tuesday, September 1, 2015

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. 

Thursday, July 30, 2015

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. 

Monday, June 29, 2015

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. 

Tuesday, May 19, 2015

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.

Wednesday, May 6, 2015

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.

Friday, May 1, 2015

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.

Friday, March 13, 2015

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.

Sunday, February 22, 2015

The Song

Today I feel like the luckiest lady in the world. Last night we had a most amazing gathering in honor of my husband's birthday.  Among the many special things that happened, was the song. Years ago, after my youngest was born, I was bedridden for three years. It was a hard time for us and Yitzi wrote a beautiful song. Thankfully we have a recording of him singing it and playing guitar. Last night our "family" of yeshiva students together with 8th day, did the most beautiful rendition ever!  Why am I so lucky?  Three years ago, I had never met 90% of the special people we now know that so enhance our lives and bring us so much joy.  Yes, life is challenging, and yes it is hard. But we get to experience more beauty then most. The best part of the human experience takes place in my home at my husband's bedside.

Wednesday, February 4, 2015

Happy Anniversary

19 years ago, on Tu B'shvat, Yitzi Hurwitz and I got married. It was a beautiful and special day. The feeling I had was, Now The world is complete and Moshiach can come.  Two souls finding each other and completing each other is it's own personal redemption. Imagine the magnification of that over millions of people and Hashem. If you don't feel that, how can you yearn for what you don't know exists?  Perhaps a silly feeling, but the two of us were going to make it our life mission to make sure that happens. We went on roller coasters and marry-go-rounds, and always landed right back on our path of bringing Moshiach. Sometimes it was us who got on the ride, and sometimes G-d put us on it. Often I came off tired and Yitzi came off laughing. "Oh how much Hashem loves us!" Clearly the path to Moshiach looks different then I thought, it is not just a mission forging on, it's wrapped in heartache and devastation, fear and anger, and always love. And yet here we are, still forging on. My one theory is that we have all gone crazy, my better theory is that we are holding the Rebbe's hand, picking up every broken flower on the way.  I don't know where we are going and how to get there, but we are holding the Rebbe's hand and he knows.

Thursday, January 29, 2015

What does that even mean?

Today is such a heartbreaking day for the Chabad community. A vibrant young rabbi has suddenly been snatched from this world, leaving behind a beautiful wife and seven small children. His very lofty soul was called back home, and we are all left in shock and in pain. The ways of Hashem continue to baffle me. There are so many Torah verses to stick in here, but they don't relieve the loss.

There is something I want you to be sensitive to. Do not say-Hashem only gives us what we can handle. You are placing blame on the family by doing that. I know, you would have never thought of that. And you would never, G-d forbid, do something like that. It is natural for the family to search themselves to try and figure out the why. When you say that, you mean well I'm sure, yet what is heard is "If I was weaker my kids would have a father".
The second part is, what does that even mean?  We lived, despite the fact?  It didn't kill us?  I won't loose my mind just like I lost my heart?  However good your intentions may be, it is an awful thing to hear.
In this situation do not rationalize pain away. It is better to sit silently and cry together.