The War Paints

I wake up in the morning and stare at my reflection and wonder how well can I hide it all today. Somewhat expertly I apply the mask of the day. It's my war paints and I can't go out without it. It hides the lack of sleep and the sadness, the pale cheeks, and the fact that I am getting older. It makes me feel stronger. I am playing the part of a women who has it all together. Get dressed, put on whatever costume I feel I need that day. The days that are ok, the mask is less intricate. It's really myself that I am trying to convince. Get up, get the kids up, breakfast, lunch, take them to school..... You know, like all mothers do. If I look the part, maybe I can play the part. Just keep going, and don't stop long enough to think. But somedays, the memories slip out of my eyes and down my cheeks. They wash away the war paints and I'm stuck staring reality in the face. Its not nearly as ok as I seem. Most of the time I fight that. G-D forbid should we be sad, let G-D down, let my family down, let myself down, let you down. But sometimes I am too tired to fight and my masks are not working. Sometimes it's ok to not be ok. But tomorrow I will probably buy new lipstick and see if that fixes it all. 

Conversations With G-D

Let's imagine for a minute that G-D took our hand in His and said "I have a job for you. It's going to be a hard one but I know you can do it. Your path will be full of heartbreak and difficulties, yet you will be able to help and comfort many. When it's time I will show you how important it was and how necessary you are, but until then, although you will comfort many, none will comfort you." 

Would you take the job? I know I would without hesitation, yet without that conversation, I am having a hell of a time with all this. This is probably true for most of us. Our challenges are straight from G-D, and we know He is good and kind and the only reason he would put coal through the fire is to make a diamond. Our souls were each told something like this on their way down, and we really have no say in that part of the deal. The part we do have a say in, is what we do with it. The founder of the Chassidik movement, the Baal Shem Tov, taught us that a soul comes into this world for 70 or 80 years just to do a favor for another. Can you imagine if we measured our success by that? Not fame or fortune, but a kind and generous heart. A person willing to forgo their personal comfort to help another. A person willing to approach another in need, and offer assistance.  Let's get really uncomfortable. Let's say, my journey is hard and I know how that feels, maybe I can make someone else's easier. Along the way, that might bring you some satisfaction and will most definitely be more purposeful. For myself, I have noticed that I am occasionally able to help people and to comfort them. Let them know they are not alone in this great big world. Yet I feel very alone. At night I am alone. In actuality and in my mind. It's painful and harsh and the worst part is also the best part. Yitzi. He healed my heart and now because of him it is broken. He taught me how to love and how to be loved. How to forgive and how to love life. The whole house revolves around him, yet he has never even seen my room. At night, it's me and my memories and conversations with G-D. 

In All Honesty, It's Time For a New Year

I love honesty, and I try to be as honest as possible in my life. This means in all of my relationships. My relationship with G-D, with people, and with myself. For most of my life this has done me alright. I am not a good pretender and there are many times we need to act certain ways and we don't always feel like it. Some people have no problem doing that, I do. You can usually see it on my face and to me that is a little invasive. I don't even write lol unless I have actually laughed out loud. I'm more a smile in my head type but there is no abbreviation for that yet. (So I'm sure you can imagine how the election is bothering me.)  But for the most part I think honesty is a good thing. Perhaps it is most challenging to be honest with ourselves. To recognize uncomfortable thoughts, emotions, and even actions. I try hard to be thankful for all that I have and to stay in a positive frame of mind, and often that works. But sometimes something hits and it hits hard. Usually it's a little thing that reminds me of the way things were and it catches me off guard. The big things I try to prepare for, but the little things are things we notice in everyday life that most people take for granted, and they just sneak up on us. Then once I am longing for what we once were, it opens the door to all we have lost. Often I admonish myself and remind myself of what we still have, but let's be honest. We have lost plenty. It has been three years since I heard my husband's voice, him sing, talk, daven, whisper. It's been two years since we have shared a room, since a nurse (stranger) is in our home, at his side, hopefully 24/7. It's been four years since we realized something is wrong and since I have taken a deep breath. It's been three since we could just go somewhere together without endless preparation. It's been a long time since I have seen Yitzi play with the kids like he used to. The youngest does not even remember what a good father he was. He may be lucky, he doesn't feel the loss as much. I miss the way he laughed, and smelled, and sounded, and how his leg would move when he was concentrating, and his eyebrows would raise when he liked the food, and how he loved me and the kids. I miss how he looked like a prince in his hat and long jacket, how standing next to him made me feel like a princess. I miss yelling at him. I miss hearing him snore. I miss dreaming of what we will do when the kids move out. I miss our little Chabad house but not nearly as much as our community and friends. I miss being who I was and not needing to be brave all of the time. I miss the simplicity of our lives and the innocence of our children. We have lost so much and yet we still have so much. One does not negate the other. Focusing on the positive does not mean the rest miraculously disappears. Every so often it's ok to recognize that loss and maybe cry for a day or two. There is no comfort for that. It's just gone. The fact that Yitzi was the way he was with all of that talent and love and joy, makes the fact that he cannot do most things so much more painful. 

It is now two years since Yitzi had a tracheotomy. Two years since he was given a new lease on life. They have been hard years but this year was a bit easier then last year. Still way harder then before. In all honesty, I am grateful for every second with Yitzi and I appreciate all we still have and all of the people who add to our lives. I also intensely miss what we had before. I am glad this year is over, it's been long enough and I look forward to a better year. Not just better then the last two years but really good. A year of good health and miracles. A year of deep breaths and restful nights. A year of revealed good, not trying hard to see how something can be good. A year of Nachas from our children. A year where we don't have to be brave and strong. A year where we all have time to smell the flowers and feel the wind and stand in a waterfall. 

Finding Yourself In The Field

We have a teaching from the Alter Rebbe, telling us that the King (G-D) is in the field. In the month of Elul, before the Jewish new year approaches, G-D is traveling the country side and we can go and meet Him in the field. When G-D will see us, He will greet us with a smile (showing us that he loves us). All year long if we want to see the king, He is in His palace and for most of us regular people, it is nearly impossible to get an audience. But now The King is accessible to all. 

In my mind, a field is where you can feel a connection with G-D. At this time of year, the harvest is done and the possibilities of what you can do with that field are endless. It is you, your potential, maybe even your vulnerabilities, and your connection with G-D. For each person that field may be different. But the thing that is the same is that if you make an effort to connect with G-D, you will be greeted with love. 

There is a story about a young girl that would leave school before morning prayers and come back after prayers. One day her grandfather followed her and watched her go to the forest and pray there. He asked her,"Why do you come here to pray? Don't you know G-D is the same everywhere?"  She answer him that although she knows G-D is the same everywhere, SHE is not the same everywhere. This is her field, the place where she feels a stronger connection to G-D. Most of us have felt moved by being in a certain environment, yet we know that G-D is always connected to us the same way, so why is it that sometimes we feel closer then other times? The deepest part of a person is their soul, and that is an actual part of G-D, right inside us, our most essential part. When we feel disconnected from G-d we are really feeling disconnected from ourselves, the deepest, purest, holiest part of ourselves. At this time of the year, Hashem tells us it's time to remember who you are. Go to that field, where you can see your dreams, your potential, and your possibilities, and there you will not only find G-D, you will find that He was with you all the time, you were just too caught up in other things to notice. We have a few days left of this month, and although the King will be going back to His palace, if you meet Him in the field, you will realize that not only is He with you always, you are with Him always, even in the palace, for you are his child as well and a child can always have access to their father. 

Riding The Waves

Here we are once again, preparing for the new year, and assessing the last year. It's been different, but mostly not as hard as the year before. I suppose we are all trying to find our place in the world and that journey never ends. As soon as we feel comfortable, things change and we need to adapt once again. It's much easier if you are not holding on for dear life to what you wanted, and are ok to ride the waves and see where they take you. Yet human nature is that we want to dream and make plans according to how we imagine our lives, and we are not necessarily good at being the passive passenger. What is also difficult is adjusting to a new direction. Clearly our destination has always been up to G-D, and we all aspire to be His partner in our part of this mysterious, yet purposeful plan. We hope to leave this world a better place then how we found it, we hope to do as much good as we can, and we plan according to our dreams, our strength, and our passions. The journey itself is where things get confusing. On a regular journey, the destination is the main focus. On this journey of life, the journey itself is of so much importance second only to the purpose of the journey. We imagine our lives from the time we are so young. What we want to be, who we want to marry, how we wish to live, what our families will be like and so much more. I am one of the lucky ones, who married the man of my dreams, had the job I always wanted, a wonderful family and so many incredible friends. Yet I find it difficult to adjust my dreams to my current situation. I still have all that I ever wanted, yet the journey has changed paths drastically. We are still moving in the direction we always were, yet everything is different. It has taken a while to adjust and perhaps we never fully do. As stubborn as I am, I refused to accept that this reality is ours for the long haul. That refusal allowed me to constantly imagine a miracle and things going back to "normal" yet prevented me from using this challenge in the way that Yitzi does, as a platform to reach those in a similar situation. He was the Chabad Emissary in Temecula and now he is the Emissary to the many people of the world trying to live with the challenges G-D has given them. If the cost wasn't so high I would say he has been given a promotion. I don't think I will ever achieve the level of peace that he has, yet it's time to stop dreaming and get to work. Since Yitzi got sick I have had the pleasure of sharing our story and lessons we have learned with many people around the world. It is my way of finding purpose in our challenge. I never expected or wanted to be a speaker. I am shy and private and this is so far from my comfort zone, I can barely wave to it from here. Yet here I am. I have found a way to make my husband proud, bring comfort to people and help support my family at the same time. In order to do this I had to first speak to my children, who will be without me while I am gone, and see what they feel about it. Right now they are all excited about it. They think it's pretty cool that I can do it and important enough that they will do without me during those times. Just to put that in perspective, that means the one parent who takes care of them will not be around. That is not a decision I take lightly, nor do they. That is their way of giving from themselves to you. One of my sons said to me, "I feel like we lost a father and the world got a hero. Yet we need a father and the world needs a hero". My children are smart and brave and strong and hurting and still willing to give more. Clearly they take after their father. 

Right now I am on my way to Miami. I look forward to meeting new people and seeing new places and then going home to my family. Aside for the holidays, I will be away just about every other weekend for the next several months. I am very excited to begin this next phase and I am so grateful to have the family and friends I do. So many people have stepped in to help at home while I am away.  There are plans for every 'what if' situation I can imagine, and believe me, I have a good imagination.  Without our friends, none of the life we have would be possible. Whatever Yitzi and I can do positive at this time is only because of you and the kindness you have shown us. May Hashem bless you with a sweet year and may He show you kindness in every part of your lives. 

Reminders

Reflections from my trip to Israel

I just returned from a very special trip with my 12 year old daughter to Israel. For those of you with more then one child, you know it's highly unusual to spend so much time with one child. We did some touring, visiting holy sites, workshops and just relaxing in Jerusalem. We bumped into many friends and made a whole lot more friends as well. We got to meet some of my mother's new family, which was really nice, and I introduced Chava to quite a few great aunts, uncles, and cousins too. Israel is a unique experience. It seems like there are equal amounts of tourists and Israelis. You see the same people over and over again. The tourists are all so excited to be there and share their experiences with other tourists. The locals are different. They have made great sacrifice to live in our homeland. They have lost friends and family, yet they have not lost hope or the ability to love. They are my heroes, and I pray daily for their safety and well being. 

There were a few things that took me by surprise. First of all, I don't love food as much as I used to. It doesn't bring me comfort and I can eat at the same place every day and not care. It's just food. This is good and bad news. Good because if it doesn't matter, then eating healthy should not be hard. Bad because I think it's important to have things that bring us comfort, and whether it's a chocolate or a friend, when something brings you comfort you should hold on to it for dear life. Jerusalem is a comfort to me. I can sit by the Kotel all day. I don't have to say anything, yet being there comforts me. G-D is silent, my husband is silent, and I can sit here silently too. Maybe if I sit long enough I will be able to hear something. 

While going to pray at Kever Rochel (grave of our matriarch Rachel) and the cave of the doubles in Chevron, where the rest of our Matriarchs, Patriarchs and Adam and Chava are buried, I found myself dry. Nothing like the last time I was there with Yitzi at the beginning of his sickness. It's not that I don't care as much, or don't believe as much, and I can't be sure what it is but of course I have my theories. We have to survive, and in order to do that, we have to find ways to be ok with our lives. It's hard to live in the past or in a hopeful future, when we are very much in the present. It takes a whole lot of energy to be here. There is a conscious effort to not spend a whole lot of time remembering how good it was and how good it will hopefully be again. It would be too easy to get lost there and be shocked all over again once our eyes are open. So we find ways to be ok and this becomes our normal. We look for the good within our situation and try to focus on that. There is also a possibility that praying for the same thing for the last 3 1/2 years, looses some of its intensity. Yet we daven every day for Moshiach and believe he will come each and every day. So this theory is not as strong as the first one. Whatever the case may be, there were two times when we could not hold back our emotions. We went through the Arab quarter and came to some steps where we could see Har Habayit, the Temple Mount. Only Muslims are allowed there and there are cops making sure of that. My soul has never been so angry before. The longing to be at the holiest site and the fact that we cannot go, was so unbearable. I just stared and cried. To be so close and so far. To be staring at exile in the face while watching those who have no business there, free to come and go as they please. It was a very new sensation for me, and in the days before the 9th of AV, an appropriate one. 

The second time was when we went to visit the grave of Chaya Spalter. She is buried on Mt. Olives and has the most magnificent view. There is nothing natural about praying at the grave of a child, and not just any child, our very special friend and neighbor. 

My daughter has been telling me every day for the last seven months that she needs to go to Israel. When I asked her where she needs to go there, she told me only two places. The Kotel (western wall) and to visit Chaya Spalter. I asked her what she wanted to say and she told me its private, but that she said what she needed to. 

Even though we have figured out a way to survive in our lives, it's good to have reminders that this is not an acceptable way to live. It can and will be so much better. We need to remember daily that as free as we are, we cannot walk up a few steps in our own land.  We are still burying children and many others far too early, and that is unacceptable. This world is surviving, but compared to what it could be, we are barely living. I suppose I'm glad for the reminders. This is not nearly enough, we need so much more. 

Just Do It

A few weeks ago I took some of my kids to the park. My son Shalom was playing with a foam bow and arrow and it got stuck in a tree about thirty feet high. Normally Yitzi would have figured this one out and I knew there was no way I could help him, so I just watched and thought if only Yitzi was here. As I am watching I see a few kids coming over to help. Each kid a different ethnicity, and holding a different kind of ball. Football, baseball, basketball. All of them throwing them and trying to hit the foam arrow. Around them were other people telling them how to do it and how they are doing it wrong. Around them were other people just enjoying their day in the park. Eventually they got it down and all the kids high-fived each other and went on their way. 

It occurred to me that these groups make up most of the population. Those who see a problem and use whatever means are at their disposal to try and fix it. Those that watch and criticize, but don't do anything positive. Those that see the problem and are overwhelmed by its magnitude and feel helpless to do anything. And those that go about their business ignoring all problems that don't effect them directly. 

It also occurred to me that without a problem, these kids would not have come together, worked on something together and solved something together. 

Two weeks ago, I had the honor and privilege of standing with people doing their best to make this world better with whatever means they have. Each person has their own way and their own reasons for the good work they do. They see something or experience something that moves them into action. Thankfully we all see and experience different things, so this work is done in so many unique ways. And because of that many problems get attention. Most of us are in the category where we are very aware of the problems around us but we don't know what to do about it. We are so inspired by those that do and wish we had the ability to make a change. Sometimes change is as big as building hospitals but can be as small as a hug. We have to recognize the value of everyday kindness and that we are all capable of it. Showing compassion and kindness to our friends and family and making people feel valued and loved. But we all know that there is so much more that we can be doing and so much more that needs to be done. 

So now I ask you, what are you passionate about? What wrongs of the world really move you? And what are you going to do about it? What is your skill set and what are your resources? Are we all stuck in that place where we see problems and talk about it until we are blue in the face? Do we criticize those who are trying to fix it because we think it should be done differently? Do we DO anything or just lament about the injustices?  G-D gave us strength deep down in our core. We need to really go deep and challenge ourselves. Do we see a problem? Yes. Do we want to fix it? Yes. Do we know how? ..... Many of us do not. But we have a few unlimited resources we can tap into. We have love, compassion, and hope. We also have intelligence (of varying degrees) and can come up with amazing ideas if we put our whole being into it. We have to think logically, where can my skills be most effective? And then apply yourself far beyond logic. Never be satisfied with the good you have done. Keep finding ways to do more. Find a few friends, make it your project and do what you can to make something better for someone else. In this world, our kind acts have a ripple effect. You will never know how much good each and every single act can do. But what we do know is that the main word is ACT. No more crying to your friends about the injustices in the world. DO SOMETHING!! 

Next weekend is the anniversary of the passing of the Lubavitcher Rebbe. He saw the world as it is and as it is capable of being. He taught us that if you see a problem, it is your duty to fix it. He had more faith in you then you can imagine. He never let the skeptics get to him. He instructed us to do what we have to, to change the world. Completely turn it over for good. In his merit, let's do something crazy. Ignore your fears and do what your soul knows has to be done.

May

May is ALS awareness month. I have been thinking about writing something all month as I read what others have gone through. There are many brave and beautiful people out there. Many have passed on and their loved ones are continuing their legacy. Many are living their lives in the most meaningful way possible. There are too many diagnosed after us who are already gone. And nothing too exciting in the 'find a cure' department. In reading so many testimonies I have noticed a few things.

I have never heard anyone say 'Why me?'  I see how brave and positive people are. I see that we can rise above our suffering to live a life of meaning and purpose. 

ALS is not a disease that affects one person. It changes families and communities. 

People have all kinds of coping mechanisms and when you find what works, just do it. Nothing is one size fits all and nobody has the right to tell you how you should be handling things. If they do, just eat chocolate. 

Everyone can help someone. Today I need help, yesterday you needed help and tomorrow it will be someone else. Be the kind of person who appreciates help and is quick to give it as well. 

We are so much more then our bodies and our abilities. We are a G-dly soul capable of reaching so far beyond our limitations. The only limits we have are the ones we put on ourselves. 

All month I have been reading about a challenge to use three words to describe ALS. Many combinations have crossed my mind and most of them are not fit for printing. But the one that I really thinks works for my family is A Love Story. Although I hate this disease and everything it does to a person, we are not a disease. We have learned a whole lot from this process. I have seen the love of brothers within the community, the way Yitzi loves G-D, and the way we love each other. 

The Music Of My Soul

Since our lifes' journey has taken this unexpected turn, we have been fortunate to meet many special people. Last week one of these people came by with his guitar, his harmonica, and his whole heart.  Within minutes his warmth and love melted the walls of fear, anger, and sarcasm that have been surrounding me lately.  It is my default setting and I've been really stuck in it .  I know that I am there and I am not proud of it, but I justify it and tell myself that I have so many good reasons to be here.  I would actually be a little crazy if I didn't feel like this.  All of the conversations in my head say that this is the logical reaction to what has been going on, and I love logic.  Yet I know that even if I am well justified, it is not a good place to be.  But I feel safer here and somehow my anger makes me feel stronger.  Being a person like me, all of this material and fuel is like a sarcastic persons dream.  I fall asleep every night thinking, 'today was very hard, and tomorrow will be just as hard or maybe harder and I have no energy left.' Where has my courage gone?  I realize that not much of our physical situation will likely change for many years, and that is if we are lucky.  Yet I cannot go on like this.  The only thing that I can do, is get out of this dark hole.  I cannot see G-d from where I am and I need Him to survive.  This position is not one of growth, of love, of hope.  My ego has taken over and left no room to find G-d.  

With one or two songs, sung with a pure and loving heart, all of that melted.  I feel my heart expanding and the tears come to my eyes.  The songs are simple and from my childhood.  

"And the main thing is to have no fear at all."

When I asked him if he knows how many actual lives this song has saved, I was referring to mine.

"I sing to G-d, for He has shown kindness to me'"

G-d has reached out to me in my pit, and sent a friend to find me and to pull me out.  Thank you for finding me and reconnecting me to my heart, to my soul, to G-d.

The Night Shift

Here I sit at 2 am watching my husband sleep. The hum of the ventilator and the air mattress keep this room from being too quiet. The noise makes me feel like I am loosing my hearing. It's loud and quiet at the same time. He sleeps so peacefully. It's been a difficult few days for him, stomach problems and minor fever. Tonight is the second night that I am nurse. I am not good at sleeping during the day so I've had 4 hours sleep in the last almost two days. I worry about being too tired, it's easier to feel down and overwhelmed. I've already broken my diet fifty times in the last two days. Stress does that. The nurse cancels and I need chocolate. There is no point in fighting it. 

It has been three years since Yitzi's diagnosis and we have all changed so much in that time. I wish I was the person I used to be. So full of hope, so certain that our miracle would come any second. By now I feel like I have some version of PTSD. Three years running on fumes. The stress does not lessen ever. The problems become more difficult and we are all exhausted. I can't seem to focus well or remember things. How do people live in panic mode? The human body is not built to be under constant stress. It takes a heavy toll on me. Many days I would rather stay home then attempt a brave face in public. The effort to seem normal is getting unbearable. I find reminders of the life we had everywhere. They are both beautiful and sad to me. Watching fathers play with their kids, husbands and wives going out together, friends marrying off children. I wonder if people appreciate what they have. I try hard to stay away from memories at night. It makes sleep even harder, but tonight sleep is not an option so I have nothing to worry about.

Dedication

I want to tell you something about dedication. Every three months my husband has to have his treach changed. It is usually done in the hospital but for him they do it at home. It takes ten minutes to set him up, about a minute to actually change it, and ten minutes to clean him up. Yitzi likes me to be there with him so he doesn't feel alone. All day I have been dreading it. It makes my knees weak and it's terrifying to me that they remove his ability to breathe. Even if it's for less then a minute. So in order to prepare for being knocked out for part of today, Yitzi started writing his Dvar Torah yesterday. He wrote all morning. He wrote after being given the sleepy pill. He wrote while they prepared him, he paused while they changed the treache and continued while they cleaned him up. He kept fighting sleep while he edited it. He fought it for an hour in a half, until he felt it was done. Then he went to sleep. I'm sure he was in pain, and uncomfortable, and so drowsy, yet more then all of that, he is dedicated. Dedicated to the Rebbe, to teaching, and to you. 

At One Time

Right now, somewhere in the world, someone is laughing and someone is crying. Someone is getting married and someone just lost their spouse. Someone is being born and someone is dying.  Someone is getting better and someone is getting worse. Someone is getting their life together and someone is falling apart. Someone is celebrating and someone is mourning. Someone is planting and someone is reaping. Someone is falling in love and someone is lonely. Someone is singing a song of joy and someone is singing a song of pain. Somewhere it is day and somewhere it is night. Somewhere it is winter and somewhere it is summer. 

This world is huge and confusing and two opposites can occur simultaneously. 

In Kohelet there is a well known verse "Everything has an appointed season, and there is a time for every matter under the heaven. 

A time to give birth and a time to die; a time to plant and a time to uproot that which is planted..." Is it possible for all of those times happen together? Same time different place. All over the world right now, it is a time for everything. Tonight is our 20th anniversary. It is a joyful day and a difficult day. Right here in my own little world, I can feel two very different emotions. I am so grateful for what I have and long with all my heart and soul for more. I hope that wherever you may be in this great world, there is someone special you are experiencing life with, through the joyful and the difficult. It is far to much to do alone. And if G-d is taking His time before introducing you to eachother, know He must think it's worth it. So here I have just one question. If all of life and death can take place at this very moment, where on this earth is our redemption? We experience exile so profoundly, so painfully and for so long, we must experience our redemption the same way. Is there no place on earth where someone is experiencing the beauty of Moshiach. How much longer must we wait for this to be a reality in this time and in this place?

My Dream

I have a dream that the day will come very soon when Jewish people are safe. In their homes, in the street, wherever they may be, however they are dressed. I dream that this world and the people in it that have such capacity to be good and beautiful realize our potential. I dream of a just society where good is recognized and rewarded and evil is despised. I dream of politicians who care more about the people then the position. I dream of people who are judged according to their actions. I dream that the line of people by the pharmacy, were getting medicine to cure them and not to keep them sick. I dream that that line would get shorter and not longer. I dream of medical breakthroughs without the bureaucratic red tape.  I dream that children should not have to fear loosing a parent. I dream of a time when the broken heart can become whole again.  I dream of a day when the prayers of our hearts are answered. 

Until that day, I will continue to work towards that dream with all of my broken heart and soul.  I hope you will too.