Monday, May 29, 2017

Mussie's Bas Mitzvah

Yesterday we celebrated the Bas Mitzvah of our daughter Mussie. It was beautiful and she was beautiful. I would like to share with you what Yitzi wrote and what I wrote. It was surprisingly difficult for me to get through it. I cried numerous times. I often speak to people about the hardships of life and get teary eyed, but this was so different. She is my baby and life has been so challenging. I so wish I could just tell her that things will be ok, but that honesty thing. It really gets in the way. 

Dear Mussie my precious pretty princess,

Since the day you were born, you were special. You always lit up the room with your smile and you knew how to make others feel good. You also have the most beautiful voice and you love children and they love you. You love to help people, you are a little mammaleh. You are also beautiful like your mother, and that is because, like her, you are beautiful on the inside and that comes out for everyone to see.

These are just some of the gifts, that Hashem gave you. It is clear, that Hashem wants you to use these amazing gifts, to lift the spirits of others and that is a true blessing.

My wish for you, is that you strive to be the most happy and wonderful version of yourself. You are our little light, our beautiful Mussie.




To My Dearest Daughter Mussie,

Mazal Tov on this very important occasion. A Bas Mitzvah is such a special time for a young lady. We welcome you to your place among the Jewish people and more specifically, among the Jewish women. The strongest, smartest and kindest people I know are Jewish women. Hashem has given you the most important task in the world, to make sure our future is strong. You are going to need brains, creativity, hard work, a big heart, a beautiful smile and unshakable faith. It will be like a recipe. Add a bit of everything and mix with love and care and often tears, and the outcome will be delicious. 
In the summer of 2013, your father and I went to Israel for a medical trial. While we were there, we davened (prayed) at many holy places, but specifically by the gravesite soft our Matriarchs. There is nothing like crying to your mother, and a mother always wants what's best for her children. We were heading to Kever Rochel (the gravesite of our matriarch Rachel) when we bumped into a girls traveling camp. They were so excited to see us as they had been davening for Tatty (Daddy) all summer. They gave us many blessings for a speedy recovery and asked if Tatty would speak to them. It was quite difficult to understand what he was saying at that time, but there, just outside Kever Rochel, Tatty gave his last speech, and it was to young ladies much like you. He told them that Hashem loves them, and how the Rebbe has so much faith in them. He told them that they are the key to our future. It will be up to them to determine out future. Right there, outside the gravesite of our mother Rochel, who is also called the mother of Galus (exile), he told these young ladies that although this exile is hard and bitter, they have what it takes to endure, and not just by the skin of their teeth, but magnificently. 
Mussie, your sunny disposition is the most similar to your father's. The way you sing while you work, the way you love to laugh and wake up with the sun -at least before you became a teenager. The biggest gift in life, to yourself and to those around you, is to be happy. It will make every part of your life better and more enjoyable. 
We watched as Tatty lost the ability to sing and to laugh out loud, and in loosing your ally, it became harder for you to maintain your sunny disposition. As our lives got harder, and we left our beloved Shlichus, being so happy was not so easy. I want to remind you that this is who you are. Sometimes we can forget who we are, but returning to yourself is like coming home. It is not nearly as hard as changing your nature. Your nature is beautiful and joyful and loving and nurturing. 


May Hashem bless you, my sweet Mussie Pie, with so much to be happy about. We are all looking forward to the day when you and your beautiful father can sing together and laugh together all the way to the Bais Hamikdosh. 


Sunday, April 9, 2017

The Four Sons

Tomorrow night the holiday of Pesach begins. This is the birth of the Jewish nation, when we went from a family to a nation. G-d took us from slavery to freedom and gifted us with the honor and responsibility of being a light unto the nations. G-d did not just physically remove us from slavery, he showed us how to live with a mentality of a free people and individually as a person without limitations. This is a holiday so rich with traditions and special foods and it all revolves around the children, who have always been the future of the Jewish people. During the Seder, we talk about the four sons and the different questions they ask. The wise son, the wicked son, the simple son and the one who does not know how to ask. And we learn what the proper answer is for each one. Last year as we were reading this part of the Haggadah, it occurred to me that I have gone through each of those 'sons' in the last few years, and that process has repeated itself numerous times. 
When Yitzi first got sick, if I was asked how I am doing, or what can be done I absolutely had no words. All I could do was an 'I have no idea' motion with my hands. I was locked in a silent world where there were no words to describe the emotions and thoughts I had. Slowly I moved to the 'Why' stage and the 'How' stage and the 'What' stage. Why would G-d do this? How will we survive? What did we do to deserve this?  I definitely went through an angry stage. I was sure I could outsmart G-d. I would argue with Him all the time. 'G-d, if you think this is going to make us stronger, or better, or teach us something I guarantee you that it won't work. Soon you will realize nothing good will come from this and you will give up on this grand plan.' And why G-d do You think you get to do this to people and then we say 'May G-d comfort you...' You don't get both. Either you destroy us or you comfort us, pick one!  Occasionally I feel slightly wiser, I can see so much good and can use this to comfort so many others. I see how Yitzi has inspired so many in need of inspiration and reminded us all not to take life for granted. He may be locked in his body but his mind and heart and soul sing with freedom. 
In the Haggadah we learn how to respond to these stages. The one who does not know how to speak, we learn that the mother comforts and opens their mouth for them. Sometimes all we can do is give a hug and be there. You have to figure out how to help and what to do for that person. The simple son needs a simple answer. G-d has done miracles and can and will again. There are no real answers to those questions, just faith. In the Haggadah it says that the wicked son gets a sharp answer. Sometimes perspective is everything. And if one is truly wicked, perhaps a sharp answer, but we are not really wicked. We are scared and angry and feel a total loss of control and if G-d is lucky, (and we are lucky) we argue with Him and don't abandon Him. The wise son gets a more detailed answer. Although I am most definitely not a wise son, I do really want to understand, and most of the time I am open to learn. 
Many of us have experienced this cycle more then once. I hope and I pray that this year we receive the ultimate answer from G-d. The one that leaves no more questions and makes us whole again. Tomorrow night is one of the most auspicious times of the year. G-d personally redeemed each and every one of us and can most definitely do it again. Use your time wisely and ask for what you need. May this be the last of our exile and this year in Jerusalem.

This is dedicated to my beloved husband Yitzi who has been a wise son since I met him. His faith and joy and love has made this world so much of a better place. He is good through and through and I love every day with him. May this year bring miracles and blessings to us all. 

Monday, March 20, 2017

Recognizing Loss and Changes

It's been over four years since Yitzi was diagnosed with ALS. That's two years longer then we thought we had, thanks to the tracheotomy.  To say this has changed us would be too much of an understatement.  For the last four years I haven't taken a deep breath, slept a full night, or felt at ease.  I know that I try to focus on the good most of time, but this time I just want to focus on the losses and the changes we have gone through.  That doesn't take away from all of the blessings we have, for it's a world of duality.  We have suffered loss, yet we still have a lot.  Not a contradiction, they are both truths.  The core parts of us have not changed.  Our character is the same, or maybe even more developed, our capacity for compassion and kindness has grown.  There are things that really get to some people that we don't have the patients to care about, yet on a bad day the most trivial issues drive us crazy.  We can sit and talk to you about matters of the heart, but small talk is torture.  As time has gone by, I see that we have changed in many ways, yet these are changes that I could not have foreseen.  Being in a state of panic for long periods of time affects us physically.  Our bodies are not made to be in fight or flight mode for years at a time.  I have asked others who have lived through similar situations how it has effected them, and these are some of the answers I got.  Decreased concentration, Insomnia, loss of interest, irritability, depression, hyper-vigilance, little or no memories, self destructive behavior, substance abuse, eating disorders, chronic pain, chronic headaches, emotional overwhelm, panic attacks, shame, nightmares, startle response, chronic fatigue, bad or no decision making skills to list a few.  Now this list is not what Yitzi is going through.  This is what families of a loved one who is sick goes through, and primarily the spouse or caretaker.*  This is something we need to talk about.  I have had thousands of conversations with families like mine, and each and every one of them is surprised that they are not the same person they were before.  They are going through extreme stress, and on top of that, they are disappointed with themselves for "falling apart".  When I tell someone that 'I am really not holding it together', they tell me one of a few things.  'How could you?', or 'who would be able to?', or 'nobody expects you to', or maybe even, 'I can see you, and you are doing fine'.  (Let's put aside the last one for now.) But when you are pouring out your hearts to me, you don't say the same.  You are expecting too much from yourselves.  It is not possible to live through this and still keep up with everything.  And when you try, you are harming yourselves and your families.   Aside for all of these unwelcomed changes, there was another response I got from almost everyone.  Do you take care of yourself?  Almost all of the people who responded were women.  (I am not going to get into why that may be, but it is noteworthy.) Mothers, wives, sisters, daughters and friends.  People who are the caretakers for a loved one.  After giving their everything for months or years on end, they begin to fall apart and learn the hard way how important it is to take care of yourself as well. Not just if you have time, but as necessary as gas is for a car to run, you need to take care of yourself.  Some people are better at this then others.  I am not very good at it, but I am learning.  This is what I have learned so far.  Make sure to eat at least two meals a day, preferably healthy.  Vitamins are essential.  Seven cups of coffee and two bars of chocolate are not helpful no matter what.  Walking in a place with more trees then people sets my heart at ease.  A waterfall earns extra points, a rattlesnake does not!!  Talking to a good friend who loves me even when there is nothing left to love, is even more important then the vitamins, but take the vitamins anyway.  Buying new lipstick or new shoes can be very helpful as well, but sometimes the thought that buying something will somehow change my circumstances, is laughable or cryable.  Depending on the day, even if it is on clearance.  Reading a good book, coloring with my kids, or watching the waves at the ocean.  Each person takes care of themselves their own way, but it has to be done.  
There is another aspect of long term illness I want to share.  Along the way there are so very many losses and each one is painful.  When Yitzi first got sick, I knew with absolute certainty that I would not survive without him.  Is it even possible to live without your heart?  Without the person who makes me me? We did everything together.  He was a very hands on father and husband.  He took care of so many things, how could I even manage without him?  I feel like it is a bit cruel, to force me to manage without him before I have to.  I was perfectly content to die with him, or at the very least, to stop living.  And now, I do almost everything on my own and I am not dying.  (We have so much help and support from the community, so in no measure am I actually doing it alone, but I am refering to living my life as a mother and wife and friend.) I am going to have to live without Yitzi.  I have already lost his smell, his sound, his music, his touch, his easygoing way of taking care of the kids and me.  I have to function in a world where for the most part, he is not by my side.  It is true that I still have him, and of course I love that and thank G-d for that daily.  But the losses, well they are there to great me every night instead of sleep.

*These same symptoms would apply to people suffering prolonged abuse of any kind as well.

Thursday, March 16, 2017

Hope4Adam

Every once in a while, you hear of someone so special they change your world forever. This was the case for me with Adam and Lia Kreif. Adam was diagnosed in July with a rare form of blood cancer and his story became very public as we joined him and his family in their search for a bone marrow donor. We all had our cheeks swabbed in the hopes that we would be a match. Over 60,000 of us did. We watched and waited and cheered when a match was found. Not only for Adam but quite a few lives were saved in this process. We prayed and took on more and more good deeds, kind deeds, whatever it would take to rock the heavens. We had his entire family in our minds constantly. What a very beautiful family, so young and with so much love you can feel it just by looking at the pictures. I am not one to give reason to what G-D does, but I do know, that G-D has a plan, and this week G-D took Adam back to the eternal home of our souls. Today I went to visit his wife and family. There are very few things that would comfort someone at this point aside for a hug and a shoulder to cry on, but I will share with you a thing or two. The pain we feel is directly related to the love we feel. If we are lucky, then the pain is excruciating. That means the love was so very powerful and special, and this is a gift we do not all get. So don't hide from it, it is not a bad thing, it is a reflection of the love we have, and that is a blessing. I also feel strongly that a husband and wife are part of each other. They are souls that are on equal grounds and they complement and complete each other in many different ways. As much as Adam touched us all, so did his wife. The love we see reflected in his eyes is the love for her and the love received from her. But maybe even more important then those two is their personal loss. Although we are all sad and broken and feel like we have lost a brother, Adam's family actually lost a brother, a son, a father, and a husband. We can cry with them, but we cannot begin to imagine the loss of such a remarkable human being to those who are his family. 

If you have not yet had the opportunity to get your cheek swabbed, please do. You can save a life and what is more important then that?


Sunday, March 12, 2017

The Space Between Reality and Memories

I breathe a deep somewhat disappointed sigh of relief. Purim is over and it wasn't awful. It wasn't fantastic either. Every day is a concerted effort to be positive and happy and Purim is no different in that way, oh but what was.... The joy the festivities, our Chabad house and our friends. They all weigh heavily on my heart and mind today. It is such a privilege to have a Chabad house and the Purim festivities, and being so busy and so tired you can't breath. Now we are home with too much time. Our home is far away from where our hearts are. We have so many new friends, but what about our before friends? The ones who we loved and the ones who loved us when we were just us. The space between reality and memory are ever growing. This is the fifth Purim since our lives changed. It is harder and harder to be positive and upbeat. It is these days, the ones where it is a Mitzvah to be happy that I find so challenging. The days that were defined by the energy of Yitzi, that I miss so much. Let's just hope the Mitzvah of being happy is counted by the minute and not the day. Perhaps then we did alright. 

Thursday, January 5, 2017

The Marathon

Here I am, stuck in a small room with needles in my foot wondering how I got here. Well, it all started with Brocha. Brocha and I have been friends since first grade and for the most part of the last 36 years, we have been best friends. Brocha is built like a gazelle. She is tall and thin and very graceful. She is the type of person who has no clue how amazing she is, but her friends all know. She is loyal and kind and very giving. Brocha called me one day asking me if it would be ok if she ran the Miami Half Marathon to help out with our medical expenses. A thought ran through my head (so fast it was barely recognizable as a thought), wouldn't it be amazing if I could do that too? But I'm not built like Brocha and I am so frozen in my fear that there is no way I can do that. Well that year team Run4Yitzi began and raised $10,000. The next year the team grew and they raised $20,000. From the day of the marathon, I started dreaming of crossing that finish line. This time really thinking about it. Can you imagine being so free you can just run?  It became a sort of obsession in my thoughts. But I developed a foot problem so I had to wait until it got better to start running. I spoke in length to Brocha, about all the reasons I really need to do this. We decided to try and raise $50,000 this year. Both of these goals are very lofty. Me running and $50,000. The team kept on growing and the people running are really amazing. Some have been lifelong friends and some we have never met. Well, a few weeks into the training said foot problem came back with a vengeance. I tried to ignore it but that created other problems. I found a Dr. who practices a few forms of Chinese medicine and said he could help me avoid surgery but it will take three weeks and I have to be off my foot. Um, hello? Have you seen my life?  But I really want to do the run so I agree. So here I am sitting in what I refer to as the Chinese torture chamber contemplating the meaning of pain. This pain is necessary to get better but my reaction to pain is what I am trying to analyze. Why are we afraid of pain? I try to avoid it at all costs. It creates a panic and I have to remember my hypno birthing visualizations and breathing . And on top of all that, I try to hide it from the Dr. as if it's a bad thing to have any reaction to pain. He knows it's killing, I know it's killing, so why am I so afraid to show any reaction? I try to remember a Dvar Torah Yitzi wrote about pain being part of the plan. So I'm saying to myself, it's part of the plan, it's part of the plan....  But then, "OH MY GOODNESS, CHANGE THE DARN PLAN!!" It is curious to me that a foot can occupy an entire head. I try to just sit in the pain, actually, that's exactly what I am doing, yet I imagine I am anywhere else but here. I think of all the times I have been in pain and how each time it was different. Having babies, going to the dentist, headaches, heartaches.  When Yitzi first got sick, I welcomed physical pain. It was such a nice break from what was going on in my heart. But it's been years now, and I believe people who have constant pain get worn down, and any other pain is too much. I try to find a ray of sunlight in this situation, but I'm coming up empty. I know it's just a foot, but let's be honest, who has time for this? He says it's getting better but I can't tell. By now it's been almost two months and it's time to face the facts. I will not be able to run this year. More then feeling slightly dumb for having to go back on my word, I am sad that I won't be running with this amazing team. I am still hoping to avoid surgery, and to fix the problem, but it won't be on time for this year's marathon. The goal of the marathon is the same, to help raise money for the many medical expenses we have. If you haven't yet, please contribute to this run. Thank you and I hope to start training the minute the Dr. says I'm good on my feet. 

Run4Yitzi