2 years

 It seems impossible that it's been 2 years and at the same time, it feels like it's been forever since I've heard your voice, but I can still hear it in my head and I'm thankful for the videos I have so I will always remember. I hope, as I have since that fateful day 2 years ago, that you are at peace. I miss talking to you, we could talk about anything and everything and we did. I miss your advice, I could ask you about anything and you would always know what to say. I still miss you but I am still thankful that you did not have to live through the past 18 months. How could we have known that 8 months after you were gone that the world would turn upside down? I can only imagine how difficult that would have been for you. You would have been so isolated no matter where you were living and we wouldn't have been able to see each other and you wouldn't have been able to see Joshua, I know that would have broken your heart. I have thought about that a lot since this all began in March of last year. I can't imagine if you would have  ended up in the hospital, we wouldn't have been able to be there. I can't imagine not being able to be there to hold your hand and see you and talk to you. I am so glad we were able to be there in person throughout your entire hospital stay and that you weren't alone. Of course there are caring people at the hospital but they're not your friends and family and I'm so glad we were able to be there. 

So as for the last year, as I told you a year ago we were in the middle of the pandemic. All of our summer plans had to change. Joshua didn't go to camp, we didn't go to camp. Everything was done virtually. We were supposed to go on our big trip to Florida to go to Disney World, Discovery Cove, and Sea World and of course none of that happened, everything was closed. Things have since opened back up but with the mask ordinances that are still in place and most places requiring them and Joshua not being able to wear one, we have been pretty isolated. We did go to the beach last summer because I couldn't imagine a summer without doing something especially the beach, it is truly Joshua's happy place. The rest of the summer he spent doing therapy. Then school started back up virtually and a week later than it was supposed to. Joshua actually stayed virtual for the entire school year. He was the only one in his class to do so, most of them went back by spring break. Then at the end of October we switched ABA therapy companies from the one we had been using since he started ABA to one that is run by a former employee of that company and several of the therapists have moved to this company from the other one including one that Joshua had and still has and she now comes to the house and she lives 5 minutes from us!. He also goes to the clinic 2 days a week for this summer and has been going since March on Fridays since Fridays were half days. Joshua turned 12! I can't believe he's going to be 13 soon! I really and truly cannot believe it! We didn't have a party, this is the first year we didn't. Debbie and Tony came down one weekend and we were actually all together for 24 hours. We went to a local farm that has playgrounds and a corn maze and that was kind of his birthday celebration. The rest of the year and into this year was pretty much the same. Joshua had therapy and school at the house and some of the time it occurred at the same time so that his ABA therapist could help with school. Joshua got better with doing school virtually and he got the Most Likely to Embrace Challenges award at the end of the year. Also he is done with elementary school and I can't believe that either! We have chosen the virtual school for next year since masks are still required in school and we don't know when that will end and also he has to do a certain number of hours of ABA to continue doing ABA unlike with the other company who just reduced his hours this company requires a certain amount of hours to continue services. He is talking so much more! I really feel like this year has been good for him. I got to see what he can do and while he was more isolated (as many people were) he is talking more and interacting more and actually having two way conversations! He will ask you how you are doing and wait for your answer and then answer your question! He did this several times a couple of weeks ago while we were on vacation and my heart just burst! I got to see what he could do in regards to school with reading and math so I understand him more and can be more knowledgeable with his teachers. He had a sweet teacher this year and also got to work with a different teacher while she was out on maternity leave. Because of the school year being moved back a week we actually were on vacation for the last week of the school year but were on virtually so he didn't miss a single day of school! We're planning on doing the same thing next year but he'll only miss 3 days of school because we'll be gone the week of Memorial Day (it's cheaper that way with our timeshare). Then last weekend we went to Tweetsie in North Carolina to Day out with Thomas. So things are starting to open back up. Mask ordinances have been lifted and it's only certain places they still want you to wear them. So it's nice we can be out in public again. I hope they lift them in more places and we can eventually go to Florida and to Disney World like we had planned. The Sunshine Foundation who is giving Joshua his dream trip announced they were cancelling all trips through 2022, I hope that doesn't turn out to be true but I haven't heard otherwise. They did offer to give families who were scheduled to go on their trip a certain amount of money to do their own trip or something else but we wanted to stay in their cute village so we're going to wait until it opens back up. Camp Burnt Gin is virtual again this year. I want to go back to the beach since we aren't going to camp but I haven't booked anything yet, of course Jamie doesn't want to take the time off this big job he's got going on. I can't imagine just being home the rest of the summer when we're used to Joshua going to camp and us going to camp and neither of those is happening for the 2nd summer in a row. So we'll see what happens. I like to think you know all of this but I also like telling you. I hope you know what is going on with us but maybe not everything going on in the world because it's been such a sad year. Things are starting to get better and I hope they continue to. I am still in touch with Esther, she messaged me on the day of your Yahrzeit to say she was thinking of you and of us. She still sends Joshua gifts on some of the Jewish holidays. I saw a post from Steve on Facebook last fall that they were moving to New Hampshire or Vermont by the end of the year. I assume that happened but I don't know for sure. I haven't heard from either of them in a long time, I'm sorry we haven't kept in touch but I have tried. I do get texts from her sister Susan every so often asking how I'm doing and she says she misses you, and Esther always says that as well. Esther has been so sweet. I hope one day I get to meet her. I have sent her photos of us, I don't know if you ever had but I wanted her to see Joshua and also sent her some of you and me because I thought she might like to. I participated in a virtual event for daughters who have lost their moms and it was very nice. I included your photo and photos of us and wrote a little something for it. It was very nice. 

So that is a bit about what the last year has been like. Like I said, I like to think that you already know. I like to think that you watch over us and "visit" us even if we aren't aware. I miss you and think of you often still. I love to talk about you and remember things we did together. I like to keep your memory alive. I hope I am doing a good job. I love you always.

Dear Mom

Dear Mom,

Here I am, 1 year later. 1 year after you are no longer physically here on this earth. I believe you are still with me but not physically as you used to be. So much has happened in 1 year. I'm not sure you would recognize life as it is right now but I will get into that later. So, 1 year ago today we were sitting in your hospital room and didn't know the significance of the day at the time. Tony, Robin, Steve, and I were all there. Jamie and Joshua were supposed to come meet us for dinner. We were playing a game of cards that I didn't understand and then we played go fish. We were watching you closely, watching your breaths, your breathing. I don't remember exactly how it happened but Robin thought it had been too long since you had taken a breath and it had been, and you were gone. Just like that. You were there so you know although of course I don't know what the experience was like for you, I only know what it was like for us. Of course we cried, we talked to you, we spent a long time in your room with you before we walked out of that room for the last time. The last time we would see you, your physical body. The next few days are a bit of blur to me until the service when we didn't see you but we knew your body was there and your spirit was there with us. I hope the service honored you, I hope we honored you. Friends came and it was a nice service. Then, one by one, everyone left. This was the hardest time for me. When everyone went back to their lives and I was left here without you. It was strange and difficult. I thought about you all the time. Every morning when I woke up it was the first thing I thought about, that you weren't here. For a long time, it was hard to not think about it. I really wasn't sure how or when it would get easier as they say it does but at some point, it did, I don't remember how or when but it did. I still think about you of course but it doesn't consume my thoughts all the time as it once did. I went to a support group at the hospital, not the one where you were but another one close by, it was okay and the people were nice but I didn't like it enough to go back. I had been in touch with Laney and the Rabbi who officiated your service (from the other synagogue, he was very nice) and they actually organized a support group that met at the JCC. I went a few times when I could (it was on Tuesday evenings and I usually had to pick up Joshua so I couldn't stay the whole time) but it was very nice. I also went to a very nice service at the hospital where you were for all families who had lost loved ones there and that was also very nice. So I did have support when I needed it. It wasn't the same as it had been when you were sick; less people checked up on me after as did during but they still did. Tony has been a tremendous support during the whole time and even now. I don't like the circumstances but we do have a relationship where we didn't before. I wish it could have happened earlier and that we could have all had a relationship together but I know you are glad that we have one now. I'm sure you know  as well that Debbie and I have a relationship as well where we didn't at all before. I had only seen her at birthday parties for Nicole's son and we didn't really talk then. When we came up for a birthday party in August we actually stayed at her house. Then she came down for Joshua's birthday party in November and she stayed at our house. Nicole and the boys were supposed to come but one of them woke up sick so they couldn't make it but Debbie came all by herself and I really appreciated that. She has been so good and so sweet with Joshua. I know you would like that. We went up there for Thanksgiving and Christmas as well and most recently in February for another birthday party. Up until March things were going as "normal" as they could be. We attended events as we usually do. Joshua had spring baseball last spring, in fact Tony and Robin and Steve came to his last baseball game. Then he had it again in the fall. Last summer Joshua went to Camp Burnt Gin by himself for the 2nd time and we went to Camp Yofi as a family for the 4th time. Both were great. The night before we were supposed to leave for Camp Yofi I actually went to that support group at the hospital but before then we all had dinner at Bojangles and I think we got food poisoning because we all got sick that night and the next day. We were late for camp and Joshua and I were both still sick when we got there but felt better the next day. It wasn't the experience I hoped for but we made it work and by the end we were enjoying ourselves like we usually do. In the fall there were fall festivals, in the winter there were winter events and things continued on like that through February. In March we all learned about the virus that still has the country pretty much on lockdown. All events have been cancelled. Like I said earlier I don't know if you would recognize life as it is right now. I know it would be hard for you because nursing homes are on lockdown still and I don't know what life at Finlay House is like right now but we wouldn't be visiting as we once were due to the concerns associated with the virus. You would be considered vulnerable and we wouldn't want you to get sick. So it wouldn't good and we would be sad. We would be relegated to video calls. We cancelled our spring break trip where we were supposed to go to Virginia and Pennsylvania because everything was closed, including Sesame Place. This summer was supposed to be our big summer, we were supposed to go to Florida and go to Disney World, Sea World, and Discovery Cove. The Sunshine Foundation cancelled all trips through the end of 2022 and Disney World remains closed until July. We were supposed to be there right now. So we cancelled that trip as well and went to the beach for almost a week instead. It's probably the only thing we will do all summer because Camp Burnt Gin and Camp Yofi have both been cancelled. There was no school past the middle of March and we don't know when/if it will resume in person. Joshua did packets from school and went to ABA therapy where he is right now. This is our "new normal" for right now. No birthday parties, no spring baseball, no therapy at The Therapy Place so no Monday night support group or Family Fun Days since the middle of March. Joshua's speech therapist still comes and he still goes to ABA therapy, that's pretty much it for the foreseeable future. So that is pretty much what life has been like for the past year. I still miss you and think about you all the time. Like I said, not as often and it doesn't consume me as it once did but I do think about you and miss you. Tony has been in NYC since the middle of March and NYC is one of the "hot zones" for the virus, all of NY is really so he has had to stay to himself mostly but today he is in Hartsdale honoring you with a visit to Ferncliff. I wish I could be there with him. He is doing that and I am doing this, writing this letter to you. I'm sure you know most of what has happened this past year because you have been watching over all of us. I decided I wanted to write this as I would if I were writing to you or talking to you on the phone even if you know most of this. I feel like I have told you most of what I wanted to say but it's not enough and I don't know how to close this out. I don't want to stop. I hope you know that you had an impact on so many people in your life and that continues. People have reached out to me today because they knew the significance of the day. I'm sure they have reached out to you in their own way as well. I'm sorry if this rambles but I just wanted to get the words out and I know it's long and all over the place. There's a country song about if Heaven wasn't so far away and I wish that too. I wish we could still visit and there never had to be goodbye. Many songs touched me in a way they hadn't before. There was another one that just came out last summer and every time I heard it I cried about a father and son about even though I'm leaving I'm not going anywhere. I like to think that you're still right here even though you're not physically here anymore. Tony has been sending me photos all day since he left the city on his way to Hartsdale and Ferncliff and just sent me one of the stone, it makes it so much more real that you really aren't here anymore physically. I hope you are at peace, watching down on all of us. I hope you know that your brother did the right thing by you. Even though I couldn't go to the service in NY that it was beautiful and people who loved you were there including your brother. Your friend Esther was there, she is still in touch with me and sends us cards and sent Joshua gifts on the Jewish holidays and lights a candle for you. Your friend Carolyn as well and Jeanette were there and they both came down to see you at the hospital. Robin and Steve were here the whole time. We saw them when we went up for the birthday party in August and they still came to Joshua's birthday party in November. Taunya came to the hospital to see you too and came down for his party as well. I still don't know how to end this but hope you know how loved you are by so many people and that you are in so many people's thoughts all the time. I hope you know that I am okay. I am sure that is something you would be worried about. I am okay. I have lots of people that love me too and have looked after me. Lots of them contacted me today to let me know they are thinking about me. So this is not goodbye or anything like that. You are in my thoughts and I miss you and love you and that will never change. Just as you would say the same about me I am sure. I hope you are with people who love you and please tell them all I said hello. I've seen several renditions of the same idea of the people at the bedside of their loved one being sad but the people on the other side there to welcome their loved one are rejoicing. I hope that is what happened one year ago today.

Love always,
Elizabeth

Elaine A. Cypres - mother, grandmother, friend.

The last 6 weeks have been a whirlwind. I think Memorial Day weekend and the entire month of June have forever been changed for me. It all started Sunday, May 26th. We were at an event at a local fire station for children with special needs that afternoon. It was brutally hot outside and we were watching the firemen (and women) show us the firetrucks and equipment. I got a call from my mother (or so I thought) but we were outside in the heat, sweating, and I decided to call her back later. When we left I called her without checking the voicemail that I later found and she didn't answer the phone. Instead the daughter of the person (Toni) who cleans her apartment answered the phone. She said when they arrived they found my mother on the floor unresponsive and they had taken her by ambulance to the closest hospital. She had fallen and hit her head and they thought she'd had seizures and possibly a stroke. My mind raced and we went home to call the hospital to confirm she was there before we went down there. When we got there she was still in the emergency room, they hadn't given her a room yet. She was having trouble clearing her airway so they intubated her and they were going to sedate her because she was having seizures and they wanted to sedate her until they got the seizures under control. There wasn't an official waiting room for the emergency room and not enough room for people to be in her area and Joshua wasn't allowed in. We waited in a little hallway for hours for them to get her a CT scan. When they finally did they didn't have the results right away and it was late so we left to get something to eat. They were supposed to call us when they had any news. We called and they didn't have any news so we went home. They didn't get her into a room in the ICU until the middle of the night. When we got home we called my brother Tony, her friend Robin, and the person who found her to update them on the situation. My brother flew down the next night and Robin drove down for the day the next day.

When we got up there the next morning which was Memorial Day (after we dropped Joshua off at the ABA therapy clinic for the day thank goodness for that) we met the nurse and nothing had really changed, we waited on the doctors to get there after making their rounds. They said they were still running tests to find out what had happened as they didn't know yet. The tests they did didn't come up with anything. They changed her medication to try to control the seizures better. Tony arrived that night and stayed at a hotel close by. We found out the next day that she had indeed had several strokes. We don't know what happened first, the fall, strokes, or seizures.

The next several days they tried to control the seizures and wouldn't wean her off the sedation until they had the seizures under control and then they would take out the breathing tube. They said seizures can last 3-5 days after a stroke and it was the full 5 days before the seizures were under control. Then they weaned her off the sedation and removed the breathing tube. We all waited on pins and needles to see what her reaction would be once she was breathing on her own and not sedated. They told us the areas of the brain that were affected by the stroke included areas related to language, speech, hearing, and vision. We didn't know how these would be affected.  Almost immediately we found out that she could see and hear and she was able to speak and understand us. The next few days she made amazing gains; she was able to answer questions, move all of her limbs, and she kept moving forward. She had PT, OT, and speech visit her and get her moving. She actually took some steps, worked on getting dressed, and personal hygiene. She was moved to the 10th floor which is the neurological floor. She had a feeding tube in her nose which bothered her a lot and the goal was to get it removed. So they did a swallow test and started her on liquids. She had to stay on the same consistency of liquids for a certain amount of days before they would do a new test. We were all waiting for that test to happen. At this point she had been in the hospital about 2 weeks.

Unfortunately, the new test never happened. In the middle of the night she developed a high fever and stopped being as responsive as she had been previously. We don't know if it was because of the fever but that is what we suspect and it took a while to get it under control but for the next several days they tried to get her to respond the way she had been and she was unable to. She was still breathing on her own but she couldn't answer questions, follow commands, or make purposeful movements. The doctors called it post-stroke dementia. The week before when we had brought Joshua up to see her she was so happy to see him and telling him she loved him. Now when we brought him one time she smiled at him, after that she didn't respond to him or us. Whenever she did make any kind of noise it was like grunts or cries. The doctors told us this was her new baseline. We were all devastated. Just a week ago she had been doing so well and making gains. We had gone to look at rehab facility for her and put in an application. This still makes me sad every time I think about it. I couldn't believe this was happening and we had no answers as to why. Everything pointed to the high fevers but they couldn't be sure. They did all kinds of tests and found nothing, no infection or anything that could they could say was the cause. We had no answers as to why she had this decline and the doctors couldn't see her coming out of it. It was awful watching her suffer without a way to communicate. We tried to communicate with her but she couldn't respond. She was trapped in her body and could only make noises but not in a communicative way. She couldn't respond to commands in any way. It was miserable for her and for us to watch her suffer this way.

We had an impossible decision to make. After watching her and not seeing any changes over several days we decided it wouldn't be fair to let her continue to suffer in this way. We knew this was not what she would have wanted. Unfortunately, she did not have a living will which would have told us her wishes but she had expressed them in the past and we knew she would not choose to continue on this way. The doctors told us they would do all they could to keep her comfortable and we decided on hospice comfort care. It was the most difficult decision I've ever had to make. It was not a position I wanted to be in, I don't think anyone does. It was very difficult for me to be there watching her when she was in this state. It was difficult before when she was communicating because she would cry and say how she was tired and sometimes tell us how she felt and that would break my heart. This was harder because she couldn't communicate. At least then I could hold her hand and talk to her, tell her I loved her and I was there and she heard me. Now I didn't know what she heard or understood and I couldn't soothe her.

I have to give all the credit to Tony for this entire ordeal, he was absolutely amazing. I couldn't be there the entire time because I had Joshua to take care of. Tony was there, almost all the time. He was the one communicating with the doctors and telling us everything that was going on. One weekend (before she came out of sedation and had the breathing tube removed) he was there, her brother and sister-in-law, and Robin and her husband Steve were there. Her friend Carolyn and her daughter came to visit for one day as well. Her friend Toni and her daughter came weekly to visit  I had wonderful support during this time. I had friends and family messaging me to ask how I was doing but Tony was the one keeping them updated on the situation. I really don't think I could have gotten through this situation without him. I wouldn't have been able to be there as much as he was and I wouldn't have had the support from him as well. Everyone was respectful of the decisions that I had make.

As time went on they did their best to get her more comfortable. They were able to get her to stop crying out as much and eventually she became peaceful. During the entire time she was in the hospital up until this point she had not been resting very much. Even when she was sedated she wasn't getting restful sleep. Once she was out of the sedation she wasn't sleeping for very long because they had to keep coming into her room to check on her. Now, she was finally getting rest. She had been fighting so much during this most recent period where would have quiet moments but not very many and she didn't really seem to sleep although she was not very awake, it's hard to know exactly where she was because she couldn't communicate. Now, she was resting and peaceful. We knew she needed the rest but we also knew the reason was the pain medication they were giving her to make her comfortable. Now was the hardest part. I knew what was coming and I didn't know what to do. I didn't know how to tell her I was sorry, I didn't know how to say goodbye. How do you do that? I couldn't and I told her this through tears. I tried to get some things out to her but I couldn't manage to find the words. I told her how many people loved her and that we wanted her to be at peace. But mostly that I was sorry that this had happened.

We spent the next several days with her as much as we could be. Tony slept at the hospital at night so she wouldn't be alone and she was never left alone. Robin and Steve came down Friday night and stayed so we could take turns ensuring someone would be with her all the time. We were all there with her on Sunday afternoon. We were actually playing cards. We were watching her breathing because it had started to slow down. We were discussing what we were going to do about dinner. Jamie was coming down with Joshua to meet us somewhere for dinner. Then it happened. It kind of caught us off guard. She was taking longer pauses between breaths and then just stopped. The next few moments kind of went by in a blur. Talking to nurses and coming to the realization that she was gone.

I have never been through anything like this before. When my father passed I wasn't there. Nor any other family members. Also, this was different. This was my mother and the family member I had been closest to my entire life. She moved to Columbia to be closer to me and to Joshua. The first preschool he attended was just a couple of miles from her apartment and he started right after she moved in. I was with her 2-3 times a week while he was at preschool for 3 hours in the morning, I was at her apartment. We would eat an early lunch and then I would go pick him up. This was for 3 years until he started preschool in the public school system. This was a private preschool for children with and without disabilities. After that we saw each other a little less frequently but still got together. She went to the zoo with us, to parks, we had lots of lunches and dinners out together. She spent holidays with us. She stayed overnight at our house occasionally like when she would watch him for us so we could go out and for holidays. She went to all of Joshua's birthday parties, my baby shower, hosted a bridal shower for me, and of course she was there for my wedding. So, devastated doesn't begin to cover how I felt.

I think I had been going through the motions for most of the time she had been in the hospital, I think somewhat I am still going through the motions. I have allowed myself to cry and feel but I still have to keep going. I really hadn't stopped thinking about the situation since it had begun. I still think about all aspects of it all the time. I'm still coming the realization that there will be no more holidays together, no more meals out, no more trips anywhere. I think as each milestone passes (as I have heard happens with other people who have been through this) those emotions will be there. Joshua will have a birthday party and she won't be there. Then there will be holidays and birthdays. I daily think about the fact that I can't talk to her on the phone anymore.

I wanted to write all of this in part for me to get it all written down, to put it all on "paper", and in part if I ever share it with anyone so they can know more about the situation and what happened. We had so many people who were there for us and who wanted to know what had happened and I think they deserve to know if they want to. I think over the coming weeks and months I may share more. So far I haven't really shared on Facebook. I guess I didn't really know how to start. It was a little too much to put in a Facebook post. So I started writing this as a way to remember what happened and also a way to express my feelings. I have been thinking about it non-stop for weeks and I needed to get it out of my head. It's a little bit therapeutic for me. We had a beautiful service for her here and lots of friends came. Anytime anyone tried to talk to me or hug me I cried. I wrote a eulogy that I never though I'd be able to read but somehow I got through it. We have a recording of it which I will share as well as a slideshow of photos. Here is the recording, I wasn't able to get it to play on my computer only on my phone Audio Recording of Service. Here is the slideshow and obituary Tribute Page. There you can post notes as well. So that's it for now. If you've made it this far, thank you. Thank you to all who were there to support me and my family during this time.

Below is the eulogy I wrote & delivered at the service.

Sitting in the hospital alone with her when I was able to get the words out through tears I told her I don't know how to do this, I don't know how to say goodbye. I tried to tell her and I hope she knew that I loved her and appreciated her but I don't think words are enough. The past few days have been busy and have seemed surreal; trying to get through each day and each task to get to today. The hardest part has been knowing that I can't pick up the phone and call her anymore. I could call her anytime and we talked about everything. She was one of my closest friends and confidants. I hope that I was the same for her. She loved her friends and family especially her grandson, my son, Joshua. I am grateful for the wonderful memories I have of them together. Every time she said goodbye to him she told him she loved him from the top of his head to the bottom of his toes and she would kiss and try to hug him, he's not big on hugs. He loved it. He loved it when she read to him. I could always count on her to help me whenever I needed help but especially with him. I couldn't have made it through our most recent move without her. I hope she knew that no matter what was going on in my life that I was there for her anytime she needed me the same that she was there for me whenever I needed her. I know that she was there for a lot of people in this room and many people who are not here. She was a friend and confidant to many. She was definitely a people person, much more than myself. I could always count on her to make friends wherever she went, whether I wanted her to or not. She did her best to encourage me to make friends She led a brownie girl scout troop when I was young to help me make friends. She would organize play dates for me. She would let friends tag along on our vacations so I would have someone to play with while she would sit on the beach and read all day long under an umbrella; I would always know where she was. I have many fond memories of trips we took together over the years. Getting lost in Washington, D.C. before GPS when we would see our hotel from the interstate after we passed it and found a cop in neighborhood where he wouldn't get out of his car to give us directions (if that gives you any idea of the kind of neighborhood it was). Going to St. Maarten with her when she had a broken leg. She was an advocate for me which has helped me to be an advocate for my son. She taught me resilience, compassion, and so many other things over the years. She was many things to many people over the years and I hope she knew that and how many people loved her. I don't think I can say thank you enough to her for all she did for me and many others. I also want to thank many people who are here today and some who aren't who have helped me and her this past month; I don't know how we would have done this without them.

10 years old!

Camp Yofi & Camp Burnt Gin

This past Sunday we returned from our third family camp experience in the mountains of northern Georgia at Ramah Darom - Camp Yofi. Ramah Darom (Ramah of the south) is a non-profit organization offering year-round Jewish programming for adults and summer camp for children and families. Ramah is the camping arm of Conservative Judaism. Each year, more than 11,500 campers and university-aged staff members populate ten residential camps, five day camps, and Israel programs. An additional 300 young Israeli adults join the Ramah camp communities annually. Overnight camps: Berkshires (New York); California; Galim (Northern California); Canada; Darom (Georgia); New England (Massachusetts); Poconos (Pennsylvania); Rockies (Colorado), Ramah Sports Academy (Connecticut), and Wisconsin. Day camps: Chicago area (Wheeling, IL); Greater Washington, DC (Germantown, MD); Jerusalem; Nyack, NY; and the Philadelphia area (Elkins Park, PA). Additionally, Ramah runs summer and high school semester programs in Israel, and partners with summer camp programming in Ukraine, Argentina, and Israel.

Ramah Darom is located on 122 acres in Clayton, GA and is surrounded on three sides by the Chattahoochee National Forest. The lake is fed by mountain brooks and a 100-foot waterfall. Ramah Darom's facility is kosher and includes a variety of modern accommodations, team building equipment, sports fields and courts, a pool and lake, a gym, and a spiritual center. Camp Ramah Darom offers two four-week sessions, full eight-week summer, Taste of Ramah - a 12-day session for first time campers ages 8-10, and a Tikvah Support Program for campers with Neurodevelopmental Disorders such as Autism and ADHD ages 12-18. The Tikvah Support Program began in 2015. Tikvah Support Staff members are specially trained to work with the children in this program. Audra Kaplan, PHD, is the Director of the Tikvah Support Program as well as Camper Care.

I found out about Camp Yofi through Ellen Seidman who writes at Love That Max http://www.lovethatmax.com/. Her family attends camps in New England including a family camp that they have at one of the camps that is similar to Camp Yofi. When I was growing up I attended Camp Young Judaea Sprout Lake and Camp Tel Yehuda. Young Judaea is a Zionist youth movement with summer and year-round programs for children and young adults in the US and Israel. So, hearing about Camp Yofi at Ramah Darom I was interested because I attended Jewish summer camp and I wanted Joshua to have that same experience.

Camp Yofi is a nationally-recognized, one-of-a-kind program for Jewish families with children with Autism Spectrum Disorder between the ages of 6 and 13. Parents, grandparents, and siblings are invited to attend and all Jewish families, regardless of denomination or synagogue affiliation, are welcome. There is a quote on the Camp Yofi page on Ramah Darom's website https://www.ramahdarom.org/camp/summer-offerings/camp-yofi/ that I wrote. “I still can’t quite put into words what Camp Yofi meant to me but I will try. It’s a place where you feel like you truly belong. Those of us in the special needs world understand how rare that is. We were definitely a part of something bigger than ourselves.” –Yofi Campers Mom. I wrote that following our first camp experience.

The mornings at Camp Yofi offer something for everyone, with separate tracks for 1) children with autism spectrum disorder, 2) siblings, and 3) parents. During the afternoon, we offer a variety of programs the entire family can enjoy. In the evenings, the Camp Yofi community comes together for campfires, guitar sing-alongs, s’mores and other family programs. After the children go to sleep and are under the care of our specialty-trained staff, adults get together for engaging programs. Each Camp Yofi family receives a chaver (a special friend) who spends mornings and evenings with the same family throughout the week, providing a helpful, supportive and consistent presence. The 5-day, 4-night program begins on Wednesday afternoon and ends on Sunday morning. Participation in Camp Yofi is accepted on a first-come, first-served basis and is limited to 25 families. Thanks to generous sponsoring foundations and individual donors the goal has always been to make Camp Yofi affordable to any family who wishes to come. Tuition for the program covers 25% of the cost of the program. The rest of the cost is subsidized through donations and grants. For those families needing additional assistance to participate in the program, a limited number of scholarships are available.

So that is a summary of Ramah, Ramah Darom, and Camp Yofi. For those who have heard about it from me the past 3 summers, I thought you might want more information. I got most of this information from Ramah and Ramah Darom's websites. Growing up I was not religious at all. Both of my parents grew up Jewish but my father was atheist and my mother was mostly non-practicing. I was named in a synagogue but I didn't attend hebrew school. I don't remember how it came up (Jewish summer camp) but my mother attended Tel Yehuda when she was a teenager and we discovered Sprout Lake (it was not around when she was growing up). Sprout Lake is for children and Tel Yehuda is for teenagers. When we were looking at camp I was still young enough to attend Sprout Lake and did so for 2 years until I aged out. I had attended another sleep away camp the year before and hated it. I loved Sprout Lake. I learned about Zionism and Judaism and it was fun! It is a typical summer camp in many ways in that you do activities you normally do at summer camp but we had services everyday. Shabbat was very special with special services and meals. Sprout Lake was my real introduction to Judaism. I still remember the prayers and so many things from camp have stuck with me all these years. I also made a very special friend there who I continued to go to camp with and came all the way from New Jersey to attend my wedding in South Carolina.

The thought that Joshua could have a similar experience at camp that I had was not something I had really considered. I believe that all children should attend camp, especially sleep away camp. Joshua got to do that without us for the first time this year! He attended Camp Burnt Gin, a summer camp in Wedgefield, South Carolina, for children who have physical disabilities and chronic illnesses. From early June until mid August, Camp Burnt Gin operates 4 six day sessions for 7 through 15 year old children, 2 six day session for teenagers, ages 16-20 and a four day session for young adults, ages 21-25. During the course of a session, campers have the chance to participate in a variety of programs such as instructional and recreational swimming, boating, fishing, arts and crafts, sports and games, fine arts, and nature study. Each cabin group has the opportunity to enjoy an overnight camping trip in which they sleep in the woods and cook their meals over a campfire. Staff members, in a ratio of one for every two campers, live with the children and assist those children who require help with their personal needs and participation in the activities. Camp Burnt Gin has two nurses in residence. Nurses are responsible for medication administration, first aid and overseeing medical treatments. Nutritous balanced meals are planned by a registered dietician and served to the children as part of the US Department of Agriculture's summer feeding program. Camp Burnt Gin provides a fun, safe summer camp experience to over 460 children who might not otherwise have the chance to attend camp because of their special health care needs. The Burnt Gin experience offers them an opportunity to meet new friends, develop recreational skills, become more independent and improve their self confidence.

So I loved the idea that Joshua could attend camp considering his special needs. Sprout Lake and Tel Yehuda was a way for me to learn about my heritage, make friends, and be away from home. Joshua was able to make friends at Camp Burnt Gin and I am grateful for the chance for him to go to camp alone as it is good for him as well as us. He was there with other children with various disabilities so while it is not inclusive not all children have the same disability so that allows him to be with children of all abilities. We were nervous about the idea of sending him and had lots of questions. We also included a "bible" we wrote as a sort of guide to him and his care needs. The counselors said this was very helpful. His counselor at Camp Yofi also read it and thought it was very helpful. At Camp Yofi we are with him for all meals and at night. The counselors have them during the mornings for 3 days and the afternoon that we arrive at camp. They do typical camp activities and rotate what they do but they always go swimming every day (one of Joshua's favorite things). In the mornings while he is with his group we are able to do different activities without him. The groups of children with autism consist of a counselor (called a chaver which is hebrew for friend) for each child and a head counselor who is a student at Nova Southeastern University in Florida. Yofi is run by Sue Kabot of Nova Southeastern and Susan Tecktiel who has been with Ramah Darom and has run Camp Yofi for all of the 14 years it's been in existence. Sue Kabot is the executive director of NSU’s Autism Institute, where she oversees multiple programs for children and young adults with autism. Her students are the head counselors for each of the groups for children with autism. There are typically 5 groups, Cochavim (hebrew for star) Aleph, Bet, Gimel, Dalet, and Hay. There are also 3 sibling groups, Perachim (hebrew for flower), Shemesh (hebrew for sun) Aleph, and Shemesh Bet. All the groups are based on age. The first year Joshua was in Cochavim Aleph and last year and this year he was Cochavim Bet. Next year he will probably be in Cochavim Gimel.

Each day (Thursday, Friday, and Saturday) at Camp Yofi starts out the same. Breakfast in the dining hall and then we drop the kids off with their groups for their morning activities. These activities rotate so that all kids (including siblings) get to have the camp experience. They go to the pool everyday and have snack everyday. They rotate through activities including singing, dancing, yoga, tower (which is a climbing tower but also includes a harness "swing" which Joshua did for the first time this year!), nature, art, cooking, and sports. The older sibling groups go to the lake and this year they added biking for them as well as for families during family time in the afternoons. The oldest sibling group (Shemesh Bet) also has their own evening programs and a camp out. They try to make it as similar to regular camp for the siblings as they can. We meet the kids groups at lunch and families spend the rest of the day together. The parents have their own programs in the morning. They get to do camp activities and have informational sessions about camp and about life in the special needs world as well as religious topics. The first session of the morning is a learning session and the second is more elective and parents can choose to do art, biking, tennis, cooking, lake, Krav Maga (Jamie & I did that this year) and they have a ropes course (we might try it next year). In the afternoons we are together as a family and they have lots of planned activities or you can do things like sports, pool, lake, art, or tower. Last year was the 13th year of Camp Yofi so we had a Yofi B'nai Mitzvah and this included a silent disco where you wear headphones so you can control the volume of the music but everyone listens to the same thing (it was very cool), magician, photo booth, and temporary tattoos. This year there was a Shabbat Fair where you could make challah, decorate candle sticks, make your own candles, and make challah covers. The planned family activities include cooking, pilates, yoga, Krav Maga, hikes to waterfalls (we did the shorter one this year), softball & soccer games. They also always do a tour of the Tikvah bunk. Tikvah is their inclusion program for children with special needs  ages 12-18 to attend camp during the regular sessions. The Tikvah bunk is air conditioned and smaller. They are a part of an integrated group with same age peers. Everyone has dinner together and then there is an evening family activity. Wednesday is always ooey, gooey, sticky night. Thursday is the campfire (we had to do this inside this year due to rain). Friday night dinner is late due to services prior to dinner so there is no evening activity and Saturday we do a family game night, this year we had family olympics. The schedule stays pretty similar year to year so families (and kids) know what to expect. We also always have a talent show usually Friday afternoon after lunch. After the evening activity parents put the children to bed and counselors come to where the families are staying and are stationed outside the rooms so parents can go to the evening activities just for parents. Wednesday night was wine & design (there is always food at these events), Thursday was a scavenger hunt, Friday was a celebrity guessing game, and Saturday was a competition event "anything you can do I can do better". I have to mention the food at camp is amazing. The counselors who have been at camp all summer always tell us that food during Camp Yofi is much better than regular camp food. It is fantastic and plentiful as it is buffet style and you can have as much as you want! They do put it up in the kitchen after a certain amount of time but you can still get some even after they put it up. After meals (lunch & dinner) there are two smaller rooms on each side of the dining hall (they call them playrooms) where counselors go to play with the kids so the parents can socialize for a bit and enjoy dessert (after lunch & dinner there is always dessert!). I think this was one of Joshua's favorite times and maybe his favorite thing about camp. It was also his main motivator to get him to eat his meals. He knew he couldn't go to the playroom if he didn't eat his meal. They have books and he gets people to read to him. Anyone who knows Joshua knows how much he loves books and having people read to him. If you read to him you are his best friend for life and he will keep bringing you books (sometimes the same one) to read. When we arrive on Wednesday afternoon we have an opening session which includes singing and then the kids go off with their groups for a shortened rotation and the parents are together to learn about how camp works (for newbies) and introductions. Each family gets a welcome kit with a folder with the schedules, maps, and names of all the staff, and a bag with snacks which is decorated by campers during regular camp. There is a sign on our door and a door hanger that we use to say when we are in or out (mostly used at night when we are gone to evening activities and the kids are alone in the room (we never leave until Joshua is asleep). We have singing at the campfire (and smores!) and then at the closing session as well. At the closing session each kid gets a paper plate award. The kids make art that we get to take home with us and this year one was framed for us with our photo from when we arrived at camp. Each year they make something different. There is a photographer and videographer who walks around all day taking photos and videos that are then put into a video and slideshow that we see at the closing session.

So that is Camp Yofi in a nutshell (okay, a rather large nutshell). Every parent says how amazing it is and the kids usually love it too but you really have to experience it to get it. For me, it is the staff that makes it amazing. They are truly wonderful people who work very hard to make the experience as magical as it is. Disney World may be the happiest place on earth but for me Camp Yofi is the happiest, friendliest, and most wonderful place on the planet with the most wonderful human beings you could ask for caring for your children. These are the type of people who should be working with our kids especially those with special needs. They are warm, caring, kind, patient, sweet, friendly, and amazing in every way. At every family activity staff who isn't actively participating form the human fence also know as the wall of love. That's really what it is. These people are love personified. Forget the fact that the programs are great and camp is great. Without these wonderful people doing what they do, especially those that work with the children and even more so the ones who work with the children with autism, it wouldn't work and it wouldn't be amazing. Every one that I've ever met has been the friendliest, kindest, and warmest people you could ever want to meet. Joshua has had three different counselors (chavers). Each one has been amazing with him. They are only supposed to be with them during the morning and meet back up with us in the afternoon as they usually are scheduled to do other things during afternoon times such as work at different areas of camp or lead different activities. This year's counselor was with us as much as we wanted him to be and was fantastic with Joshua. We did a walk to a waterfall and he carried Joshua for more than half the walk up to the waterfall singing to him all the time (one of the songs he sang was from Barney, the I love you song, how sweet is that?!). He was patient in reading books to him over and over again. He learned early on how much Joshua loves books and would take a book from the playroom with him wherever they went so if Joshua got bored or tired of waiting for something he had a book for him to look at or he would read to him. He had Joshua on a float in the pool (I sent my husband to spy on them once) and he just pulled and pushed him around the pool (Joshua can't swim). The only thing they could do to improve it is to make it longer. They start working on it as soon as the regular camp session ends so it couldn't start any earlier and this year some of the kids went back to school the day after it ended and they do need time to travel as many of the families come from Florida and those who drive have a very long drive (10+ hours for many). We are lucky it is less than a 4 hour drive for us. So that's it it; we love it, and we love the people who make it possible. Watch the video and the slideshow you will get just a small taste of what it is and maybe some of the magic that is Camp Yofi. Here is a link to last year's video https://www.youtube.com/watch?v=Km8YKFuJijg&t=2s
Here is the slideshow from 2016 https://vimeo.com/178770985.

9 years old!

Better late than never! Here is the slideshow I made for Joshua's birthday.

Happy 8th Birthday Joshua!

Happy 8th Birthday little man! We love you so much and are so proud of you!

Long Time No Blog

We have been busy. So what else is new, right? Joshua has been doing great at school. He settled right in with virtually no problems with adjustment. Me, on the other hand, that's another story. His teacher is pleased with his progress. We had a little parent-teacher conference in October and she said he is very go with the flow. I said are we talking about the same child? Ha! Recently he has shown her more of his personality as she said that he was starting to have an opinion, he doesn't always want to do what she wants him to do but they make it work. That sounds more like the Joshua that I know. In addition to school he is also getting ABA therapy at home, about 20 hours per week. During the week he is busy from about 7am to 7pm with time for eating and he does nap at school. That was very shocking to me as he has always been particular about napping but he is napping at school. Some days it's only a 20 minute nap, other days they have to wake him up and he gets about an hour. At home he is still napping the same, most of the time we wake him up after 90 minutes. I think he is just tired from all that he is doing. Right now there are 6 kids in Joshua's class, there were only 5 until this past week when another joined. All boys. They do spend time with the kids next door, another developmentally delayed class, and the kindergartners at recess and lunch. They also had a Harvest Day celebration at the end of October and spent all morning with the kindergartners. I'm sure I'm rambling but I'm just trying to get 3 months of activity into one post. He loves circle time, of course, and got an award for waiting his turn at circle time. He loves the days of the week song and will try to sing it at home and do the motions. I am always getting good reports (I get a report everyday) about his participation, hard working, that he is happy & energetic. Sometimes he even requests to go back and do more work! They have iPads in the classroom and that is his first activity of the day (they get to choose and he always chooses iPad). I know that he would not have transitioned so well without his first preschool and I am beyond grateful that he got that experience.

I got  progress report at the end of October and he is doing well according to his therapists and teacher. Physical Therapy -  He is transitioning well from his classroom to therapy sessions. He is participating well but does require verbal prompts for redirection (not unusual). They are trying to get him to jump on the trampoline but he is marching, we have seen him do it too, it's cute but not exactly what we want him to do. He is pedaling on the tricycle multiple consecutive revolutions but not consistently. He has already met some PT goals like standing from the floor or from a kneel position. Occupational Therapy - He has met goals of increasing use of dominant hand and finger isolation. I have talked to the OT (she's easy to communicate with) about his hand dominance since we thought he was left handed and she has seen him use his right hand and she is not concerned. She said to let him choose what hand he wants to use and she is doing that in therapy. It is possible he will be ambidextrous. He is making progress with lacing beads and holding and using a crayon. Only issue we are really seeing is with his eating. He does not want to eat foods that require a fork or spoon at school. I have left foods at school for him to try when he is interested and he has tried a few more than he had been eating but not much. I never thought he had a limited diet but I think he does. Not extremely so but a little bit. We have tried school lunch and he ate hot dog twice but nothing else so we aren't doing that right now. He has made progress in walking in the halls and cleaning up at snack and meal times. Initially he did not want to walk in the halls but now does it with verbal and visual cues. He is also cleaning up with verbal cues. He is not interested in using the potty at school. We are working on potty training at home, not full time but I would like to try maybe over holiday break. He will sit on the potty at home and he does go in the morning and after nap and some other times as well. He is making progress in social goals as well such as greeting others, playing with a peer, participating in group activities, and checking his schedule. He likes to wander so he doesn't always staying in the area he's supposed to be in. He's doing well with checking his schedule. They have to collect a laminated card that says check your schedule, go to their schedule, collect the first card available, and if it is choice time they get to choose an activity from another board. He does great with all of that. It's the next step where he has to get to the desired location that he still has trouble with. He sings along with songs but he is not consistently doing the same activity in the song when asked. This is true of counting, naming shapes, colors, and body parts. Speech - he is consistently exchanging a picture symbol for a desired item with 80% accuracy from a field of 6. He is producing word approximations for car, numbers 1-5, go (not an approximation though), help, my turn, and some colors. He is signing my turn, help, please and more. In ABA therapy he has 9 signs he uses consistently. All in all I'd say he's made some excellent progress in just a few short months of the combination of school and ABA therapy. He's also receiving PT, speech, and music therapy outside of school. His music therapist gave us 6 months of therapy while we are trying to secure funding to continue therapy.

In the last week he turned 5! I can't believe 5 years have gone by so quickly. But we have been busy and he has been especially. We specifically asked for no gifts because he is spending so much of his time in school and therapy that he doesn't have time for them. We did get him a portable DVD player that they use in therapy (as a reward) and he has gotten some DVDs. He's also gotten books and money to spend on iTunes for games for the iPad. He is doing great with the iPad, we've gotten some great apps when they've gone free. I highly recommend the website SmartAppsForKids.com. They also have a Facebook page. They do Free App Fridays where they put a list together of great free apps and everyday they do a free and reduced apps post. We have transitioned him to a bigger car seat as he had outgrown his convertible car seats. We got a Britax Frontier 90 that will allow him to be in a 5 point harness longer and then transitions to a booster. He is singing all the time. I know that music therapy has been wonderful for him. Just the other day his speech therapist was telling me that he was trying to mimic everything she was saying. He has said the whole of ready, set, go from which he used to just say go. He will try to sing along to just about anything. His verbalizations and word approximations have really increased.

As for the rest of us I am finished with school! I will graduate in February (the next available conferral) with honors and possibly Magna Cum Laude or Cum Laude. It has been almost 2 years since I started on this going back to school journey but it has been worth it. This past semester was full time and it kept me very busy but once Joshua was in school it was easier to keep up. Today is the official last day of the semester, all of my work has been submitted, and I am waiting on grades for one class. The other class I have received a final grade of A and I expect that of my other class as well. That will give me a GPA of 3.97 and should allow me to graduate Magna Cum Laude.

I'm sure I've left something out but I think this is long enough for now!