What A Difference A Year Makes

     I just finished rereading my last years post about Chanukah. As I read it, I could clearly remember the sadness and pain I felt last year. The feeling that this is what the future held. Chanukah after Chanukah of disappointment for me as a parent. Let me tell you what a difference a year makes. I want to share with you the amazement and wonder I feel right now.
     Last night was the first night of Chanukah. As soon as the sabbath ended we ran in to the living room to light the menorahs. As is the tradition in most homes, we light in age order. My husband finished lighting his menorah and I turned to my oldest and said "Yonatan, your turn". He looked at me and said "no" and I thought to myself, here we go again. We then turned to our middle son and said "your turn". He started to sing the blessings beautifully, when out of the corner of my ear I heard my oldest say "when Raphi finishes, it is my turn". True to his word, as soon as his brother had finished lighting his candle, my oldest stood up, held the candle and with our assistance said all the blessings and lit his menorah with a big smile on his face. After my daughter finished lighting her candle we all sang the songs that follow and had a big dance party. Yonatan led the pack! And then, like any regular kid, he sat himself down on the couch and said "OK, I am ready for my present"! It was amazing. Even more amazing, was the smile on his face when he opened his "My Own Mailbox" with its red flag, post cards and all (A huge thanks to my good friend who found that one for me). He could not stop saying thank you very much to me and my husband. He was over the moon. He was enjoying Chanukah like any other child and I simply could not believe it.

     Tonight, the second night, we hosted my husbands family for a Chanukah party. Everyone came in time for the menorah lighting. Just like last night, my husband started us off and this time without even having to ask, my oldest came to the table and got ready to light his candles. As many of you know he is speech impaired and so it is not easy for him to say the brachot by himself. As he stood there reciting after us, to the best of his ability, I overheard my husbands Grandfather saying that it breaks his heart. It is very hard for him that his great grandson has trouble speaking and has special needs. It really causes him pain. As I looked at the tears in his eyes and then looked over at my son standing there lighting the candles, I thought to myself, this is not a painful moment. This is a joyous one. This is the moment when my son stood up and experienced Chanukah like all other children. I hope next year that is what my husbands grandfather will feel, because truthfully, it feels much better. It feels much better to look at my son with the pride of a Jewish Mother watching her son accomplish and enjoy what comes so easily to other jewish children. I truly hope that each year, I can go back and read my earlier posts and always be able to see Yonatans growth. It is these moments that really make it all worth while.

After The Storm

            When I was a kid we lived in NYC. For weekends in the spring and for summers, like many families, we left the city and headed to the beach. My family, nuclear and extended, went to Long Beach on Long Island. I have amazing memories of those times. Playing with cousins, going to the beach for hours at a time, eating sandy sandwiches (always grilled cheese for me), flying kites, going to the arcade on the boardwalk (back in the day when $2 could buy you endless fun at an arcade) and riding our bikes to Baskin Robbins. To this day I can’t believe how often I ate a Banana Royale myself. 3 scoops of ice cream, always mint chocolate chip, bananas, whipped cream, butterscotch and a cherry on top.

            We just traveled with our whole family to NY for my nieces Bat Mitzvah. It was, oddly enough, our first trip with our kids to NY. I was very excited to show my kids the different parts of my past; the building where I grew up, Central Park, my cousins apt where I spent half of my childhood. I wanted to take them on the subway and make sure they had plenty of time to play with their cousins and I really wanted to take them to Long Beach. I have been telling my middle child stories about the fun we used to have there, for the last few months in anticipation, and he was dying to see it.

            In the wake of Hurricane Sandy it became evident that Long Beach was one of the worst hit places. Bordered on one side by the ocean and the other by the bay, the whole town was over taken by water. The Bay and the Ocean actually met during the storm in the middle of Long Beach. It seemed that even if I wanted to take my kids there it might prove impossible. It was being guarded by The National Guard and was declared a disaster zone. More than one person told me to preserve my memories and not to head back there.

            We were in NY for 5 days. We had an incredibly successful trip. The kids had a great time. We spent time with family; we rode the ferris wheel in Toys R, even got to go in the Scooby Doo car. My kids went to Dunkin Donuts twice, played in my grandmother’s house doing all the things we did as children. Everyone behaved, even though no one really slept enough. It seemed all my nerves about taking this trip were for nothing. Even my oldest was a rockstar.

            We were going to try to get to Long Beach as our last stop before heading to the airport but in the end my kids opted to play with their cousins for the last two hours instead. As we were driving to Long Island my daughter fell asleep in the car and rather than wake her I decided to sit in the car with her. I then realized I could seize the opportunity and head to Long Beach with just her.

            As I drove over the Atlantic Beach Bridge I began to see the destruction. Throughout Atlantic Beach and Long Beach there is trash piled everywhere. Houses are dirty and are being picked apart by construction workers. It smells bad. People in Hazmat suits with masks are working in homes and buildings. Port-a-Potties on the streets and Red Cross relief trucks coming to help out.  All of this, weeks after the storm.

            I was relieved to see that all of the homes that had significance to me were still standing and while they had damage, they seemed like they would be OK. I was happy to see The Laurel Luncheonette open for business and looking the same as it did more than 10 years ago. It was crazy to see that half of the sand from the beach was on the wrong side of the boardwalk and pieces of the boardwalk were missing. I wanted to go check if my Baskin Robbins had survived and get some ice cream, for old times sake, but I ran out of time, it was that or catch my flight! Truthfully, I think had I gotten there and seen it gone it would have been too much sadness.

            It was devastating to see the destruction, to see many of my childhood memories be tarnished in this way and to see what the residents have to do before they can even begin to rebuild. It was truly sad. I am glad I went so that I could see that my grandparents home was still standing, even though my grandfathers beloved dock on the bay did not look like it made it. It was wonderful to see the synagogue next door to our house was mostly intact, even though I understand that the basement was destroyed. I wonder if the arcade is sill there or if that part of the boardwalk was destroyed.

All in all, I am happy I went back. But I am also very sad.

My Grandparents home

           

The Dock On The Bay across from my grandparents house

Our First Home In LB

The last home we lived in there for many years

Piles of trash in front of homes, these are everywhere you look

            

The Tooth Fairy

     Tonight, while I was at back to school night for my middle child, my oldest lost his first tooth. Well, not exactly his first, but his first spontaneous tooth loss. (The first two came out after an unfortunate incident with a swing and some unsupervised time with his grandfather- but that story is for another posting). When I got home, the babysitter pointed to the tooth, sitting on a tissue next to the kitchen sink, and said "oh by the way, I almost forgot to tell you...".
     As I stood there looking at the tooth I found myself feeling sad and melancholy. The truth is, that losing a tooth is a big milestone for a child. They watch it happen to their friends, their relatives and their siblings and they wait excitedly for it to happen to them. They hear rumors about the tooth fairy and try to guess who it is. They take that tooth and put it under their pillow and wake up bright and early to see what awaits them in the morning. Like I said, a really exciting milestone in any childs life. But, like most of these "normal" experiences, they are different in our house. My son likely doesn't care that he lost a tooth. It is not inherently exciting for him like it is for other children. He won't be excited about the "tooth fairy" and who she is. He won't equate losing a tooth with feeling proud and grown up. It will probably be just a blip on his radar. Far less interesting than the fact that the mail man came at 7 pm the last few nights which, by the way, has sent our daily schedule into a tailspin!
    If I hand him a dollar in the morning (inflation is out of control, when I was a kid it was a dime or a quarter) and tell him that the tooth fairy left it for him, he will shrug and tell me to give it to his teacher so that he can buy a drink from the lunch lady at school, which we do every day anyway. Like I said, just a blip on his radar. Nothing out of the ordinary.
     Maybe I should be happy. I never have to see his sad face when he realizes that there is no tooth fairy, and that is just me creeping into his room at night. I will save a good twenty bucks, nothing to sneeze at with the going rate per tooth, and I won't have to feel bad on the mornings when I realize that I forgot to make the tooth for money exchange during the night. I should look at this as "my luck". But, I don't. I want to experience those moments as a parent. I want my child to experience the joys of being a child. I still remember the little tooth pillow I had when I was a kid with it's little pocket for the tooth and a place for my loot. I want it for me and I want it for him. It is part of the myriad of pleasures that we should get to experience as parents.
     Maybe I am wrong. Maybe, he will wake up in the morning and be excited to show me that he lost a tooth. Maybe I will be able to explain to him that the tooth fairy came during the night and left him something. Maybe he will get it and with each successive tooth, I will be out a buck. If so, it will be the best and happiest $20 (or however many baby teeth we have) that I have spent. I don't know. But either way, I am going to try. I will get up right now and put the dollar under his pillow. Maybe, I am not actually doing this for him and really I am doing it for me, but that is OK too. I think, part of being a parent is doing things that make us feel good too.
   

Divide and Conquer

     When I was younger I always pictured my life nice and tidy and tied with a big bow. I think most of us do. We imagine the life we will have and it is usually bright and shiny and easy. We are too young and dumb to think it could be any other way. So I envisioned a life with my big family and all the things we would do. I think one of the hardest parts of my actual life, for me, is the adjustment I had to make from the life I imagined to the life I actually live.
    That is a reality we all face. Not only me as the mother of a special needs child but anyone whose life has at all veered from the path they imagined (which is probably everyone in some form). I find that I am often still coming to terms with this reality and so it is sometimes challenging to figure out what path to take. For example, for the longest time I resisted getting help on Saturdays. In my mind, Shabbat was a family day and if I had someone else watching my son that meant he was not experiencing the things that were special and unique to that day. Until one day I woke up and realized that none of us were because instead of sitting down at the shabbat table or being inside of synagogue one or some of us were out delivering the mail with him. Instead of just him losing out on something that he had no idea he was missing, we all were. And so I hired someone to help out on Saturdays. It is true, that is not the way I imagined my family experiencing shabbat but it works, and that is what matters. So to with Sundays. As I have written in the past, for a long time we rarely did anything more than going to the Coffee Bean on Sundays (which as many of you know is somewhat of its own religion for us). The truth is, that it works for us. It is something that all of my children enjoy and so that was enough. Only recently have we begun to expand our repertoire to include more activity on Sundays. And you know what, that was OK.
     Until now. Our middle child is getting older. He is 5 and ready to experience more. He hears about all of the things his friends do and is ready to do them too. Unfortunately though, he is often held back. It is difficult for us to do these things as a family. Taking our older son to a lot of these fun and exciting places is out of the question and truthfully just plain not worth it. Does that mean though that his siblings should not have those opportunities that they crave. That we as parents should not be able to provide them and watch our other children bask in the amazement of these things.
    It is a very big step to look at your family unit and be able to say that it works best when divided. The dream is to be able to do everything together. To go places and experience them with all of our children. To have albums filled with pictures (at least theoretical albums because anyone who knows me knows that even if I had the pictures printed they would just collect dust in their envelope) of all of the great things that our family has done. We are finally taking that step. We are untying the big imagined tidy bow.
     Tomorrow my husband is packing up the car early in the morning (or at least early for him) and hitting the road with our middle child. They are going to San Diego to visit Sea World and Legoland. Two rites of passage for any Southern California child. This is not a trip that would work for my oldest and my youngest is too young to know that she missed it. So we have decided, that for our family, not all pictures will have to include everyone and that it is OK. There will be plenty of things  that we will all do together but that it is also ok to understand our family unit and be comfortable with how it best functions. Sure, I am a little sad that we can't do it together and jealous of the fact that my husband will be there to see my middle ones face light up as he pets his first dolphin or goes on a roller coaster but the truth is, I am mostly excited for my son. He is going to have the best time. He doesn't know that he is going yet. The plan is to tell him when he gets in the car tomorrow so that I can have the opportunity to see his face light up without his siblings feeling left out or sad. Yeah it stinks that I won't be a part of it but truthfully, roller coasters make me nauseous and I am afraid of animals and these two facts help to console me.
    So while part of me is sad about the fact that the life that I envisioned is not the reality, the other part of me is excited that we have managed to figure out how to still make it work. How to provide each of our children with experiences and memories that they will cherish. Some will be together and some will be apart but I know that each one will be special.

Making Lemonade

     I received an inquiry on Friday through my companies website from a farmer who asked me to contact her. She sent an email like many others do, saying that she was interested in learning more and asked that someone contact her to show her a demo. What I particularly love about what I do is that I have the opportunity to speak with people who are 1) truly fascinating and 2) extremely passionate about making this world a better and healthier place. Because of this, I can really say that I am often lucky enough to speak to many interesting people in the course of my day/week. This woman though, blew me a way.
     I would never have thought, when I started this job that my personal and professional life would intersect in so many ways. As it turns out though, they do. When you work with people who are passionate, you often find yourself meeting people who apply their passions in many ways. For example, there is the farm that is actually a home/program for adults with special needs. The adults come to live on the farm, in one of their many community homes, and while living there learn about agriculture, farming as a profession and how to run a csa. They provide them with an opportunity to have a profession, invaluable life skills as well as a community to be a part of. There is probably no greater gift that you can give to an adult with special needs then a place in society.
    There is the buying coop a colleague of mine came across in Florida that was started by moms of kids with special needs who have to adhere to certain diets and so they decided to make it easier for all of the mothers like them in their area. I could give more examples but I am sure you catch my drift.
     And then there is the woman I spoke with on Friday. I started off the conversation as I always do by saying "So tell me about your CSA program". Her response: "well I have an 11 year old son with special needs who needed a specific diet..." Part of that diet was to drink 2 gallons of organic cream each week. So she figured, since she lived on a farm anyway, she might as well get a cow because it was so much cheaper, and from there she started her dairy csa. The next thing was that her son needed organically grown fruits and vegetables and she began farming them and so began her veggie csa. She then thought to herself, that the youth in her area seemed to be spending too much time hanging on the street corners. Since she needed labor for her farm anyway she started a riding program for youth. In exchange for riding lessons they would work the land and with that she got the teenagers off the streets. She made sure in purchasing her horses that they were trained for people with disabilities so that she could accommodate children with epilepsy or other disabilities.
     And that was just her getting started. She was probably one of the most impressive people I have ever spoken with. I told her about my son, we exchanged some stories and she totally got it. By the end of the call I felt like we were friends.
     I often think about what my legacy will be. I don't mean in a grandiose way but more in a "in what way will I impact people" way. I feel like I was given this life for a reason. I feel strongly that it is not just about getting through my "situation" but about what impact I can have on others as a result. After speaking with her I know that it is time to kick that into high gear. Her son is only a little older than mine and look at what she has already accomplished! I want to take my lemons and turn them into lemonade. I want to make sure that my legacy is that I helped as many mothers like me and as many children like mine. I don't know how yet, but I guess it is time to start figuring it out.

Stranger Danger

    My husband always says that a cute child with special needs usually turns into a weird adult. That what is cute today, will probably just be strange in 15 years. As a result, I try very hard to be very tolerant and kind to other children and adults with special needs. I know that to most of you this seems obvious, of course one should be kind and tolerant to people with disabilities but to be honest it isn't always so easy. As I have said in the past, I was not born with an abundance of patience and so when I found myself in line behind someone who was a little off and taking forever, I became impatient. Or when a stranger who was strange tried to speak to me at the supermarket, I found it annoying. I am sure I can come up with a whole bunch of examples like this but I think you get my drift. In the last 7 years however, I have worked hard to change this.
     Being Yonatan's mother, I have not only become a more patient person (stop laughing, it is true. If you only remembered what I was like before...) I have also worked to be more tolerant and kind to people who are "different". One might say that not as many people as I think are "different" actually are, and that I would be better off not diagnosing every other person I meet with some form of autism or special needs, but the truth is, I really try to look at every person and treat them the way I would want them to treat my son. I would say that I have been successful in this endeavor.
     I have started drinking a Cappuccino Blast from Baskin Robins daily. I pull up to the Baskin Robbins next to my house every day at lunch time and grab my lunch to go. When I got there today there was a man in front of me in line. There was clearly something a little off considering the fact that it is summertime and he was wearing a ski cap and a jacket and had some difficulty ordering. After he finished ordering he turned to me, put his hand out and said "Hi I am Tom". The new tolerant and kind me put my hand right out and said "it is nice to meet you" and smiled at him. Great, no problem. Martha, my favorite employee at Baskin Robbins handed me my drink and I was on my way.
    Except, as I was leaving so was Tom. He walked me to my car and asked if we could be friends. He said that he had just moved to the neighborhood, had met Nicole and her child at the laundromat but was still looking to meet more people and asked if he could give me his roommates number so I could give him a call. No problem I said and took down his number and made a move towards my car. He then asked me what my name was and I said Mary (using my Coffee Bean and Starbucks name). As I turned to my car I noticed that he was lingering. At this point I started to get a little uncomfortable. I started to wonder if he might try to get into the car? Why he was still standing there? Would he ask me for a ride? Might he be dangerous? I told him I was going to leave now and he asked if he could watch me start my car. I said yes but told him to move back so I wouldn't hurt him and made a quick dive into my car and hit the lock button immediately. He then came to my window and asked me to roll it down at which point I told him that I really needed to leave. He said "bye Mary, it was nice to meet you" and waved. He was crossing the street while I waited for the light and waved at me for a full 2 minutes while I sat at the light.
    Here is the thing. I did not want to be afraid. I looked at him and thought, this could be my son one day. I wanted to treat him the way I would want people to treat my son and I truly believe that I did. But, even though I did the right thing, I was still afraid and throughout the experience kept thinking that I really wish I weren't and how sad it was that I was. Because really, Tom was just looking for a friend and because of whatever disability he has, he truly doesn't understand that meeting people in Baskin Robins is not an acceptable way to make those friends. But that is not his fault. At the same time, one really doesn't have any way of knowing who is friend and who is foe. In this day and age you have to worry that someone may jump in your car and attack you. I get that, I just wish I didn't have to see my sons 40 year old face super imposed onto Toms.

Flying Solo

     I am about to embark on my first solo vacation in ages. I am off to NY for a wedding on July 4^th.  While there is a work component to this trip and a kids element, really it is a long overdue chance at some alone time mixed in with what I hope will be some peace and quiet.

     This is a 3 day trip only. I am spending a good part of the first day driving up to visit a camp for kids with special needs that my husband and I are considering sending our son to. That is the kids element. Tuesday night will be spent hanging out with a friend and will possibly involve a trip to the theater. Wednesday is a day off. I may go to the beach, I may just walk around NYC and I may just stare into space. Whatever I do though, there will be no children yelling at me, no dirty hands smearing my clothes, no obligations (until the wedding starts) there will simply be some time to enjoy myself. Thursday is back to work, with a long work meeting scheduled, but I will still be in the city I love without my kids. So it will still feel like vacation.

     I cannot tell you how much I need this. It has been a very long time since I have had a break. My husband and I did go away in the winter for 5 days, which was amazing, but I worked every day of that week. July 4^th will be the first time in a long time that I don’t have to work and don’t have to be a mom. I can’t wait. I may even try to figure out how to sleep late for the first time in forever (although I doubt my internal alarm clock will allow it. I guess even 7:45 will be a dream come true!)

     If you ask my husband I have been very tense of late. My patience for my kids has been thin and I have been snappy. I have known all along that he is mostly right and that what I need is a chance to breathe, a chance to have some me time. Our trip to Israel was wonderful but intense. Trying to keep up with all we learned and balance things back at home is hard. My son is now between school and summer school and having him home for 2 weeks is hard on him and hard on me. I work from home, which allows for way too much time for him to be screaming and yelling in my presence. It is as if he saves it all up for the moment he sees me, and then lets loose. My babysitter begs me to leave because he is so much better behaved when I am not around.  As I said, I really need to get away.

     I hope I am not pinning too much hope on this short little trip. I hope it will be as refreshing, as I need it to be and that I will come back feeling a little less tense and a little more relaxed. To be honest, if I don’t I am pretty sure my husband will remind me that he sent me away for that reason and that now he is “off duty”.  No matter what though, I will enjoy myself and be sure to make it about me. I have earned this mini-vacation and I intend to enjoy every minute of it.

    Wheels up and off I go…. Except wait, of course, just my luck. They just told us to deplane and that the flight is now delayed 3 hours. Not an very auspicious start. Silver lining,  At least my kids aren’t with me!