Long Island Alzheimer's Foundation Honor

Every year during the month of November - Alzheimer's Awareness Month - the Long Island Alzheimer's Foundation (LIAF) holds a candle lighting ceremony to honor those suffering with the disease and the caregivers who care for them, as well as remembering all those we have lost to this disease.

I was invited the day before, and I honestly didn't think I would be able to go because I had been sick the entire week with a very bad sore throat (which a visit to the doctor yesterday revealed tonsillitis and swollen glands). My heart tugged at me though because I wanted to go for Mike. Courtney decided to miss her last class and we decided to go.

As always, the ceremony was beautiful as well as emotional. I had taken Mike to LIAF when he was first diagnosed, but at the time they thought he would fit better in another day program at our local JCC. LIAF's facility is beautiful and they have a wide range of programs for people at different stages of the disease. Their staff has always been kind and welcoming to all.

In the middle of the ceremony, one of the program directors, Alana, went up to the microphone and began talking about our family. Unbeknownst to Courtney and I, they planned a small and touching tribute to Mike, the kids and I for the the advocacy work we do. I have received a number of awards over the years, and they all mean something very special to me, but honestly, this one held a special place in my heart.

I had just been explaining to my co-workers how disappointing it is that the different Alzheimer's organizations we have worked with always seem to be at odds with each other. Although their goal of caring for patients and supporting caregivers are the same, there is always a competition there that sometimes becomes unsettling, to say the least. At this tribute though, Alana had absolutely NO PROBLEM, talking about all the work we have done to raise awareness for ALL organizations - then she began to mention: LIAF, Alzheimer's Foundation of America and the Alzheimer's Association. I couldn't believe what I was hearing. If I had ever heard one organization talking about another, it was always in a derogatory way, but not Alana. She completely understood that we will help any organization, in any capacity we can, if we know it could help someone else struggling with Alzheimer's. Personally, that's what I feel all these organizations should do, but sadly, that's not the case.

Needless to say, I was so surprised, shocked and overwhelmed with emotion, that I couldn't even properly thank the staff at LIAF when we were handed the award - and I felt terrible about that. I thanked those I could afterward and pray that when Alana reads this (I know she will) she will once again express our sincerest appreciation to the staff.

(Courtney and I are pictured with Alana Rosenstein and Fred Jenny)

Hurricane Sandy

A week before most news stations picked up on the story, my nephew, Steve Travis (my personal meteorologist) contacted us to let us know Long Island was expected to be hit big by a significant  hurricane the day after Mike's and mine wedding anniversary (10/28. We were married 24 years) He was right....

This is a house two doors down from us and scenes like this took place all across Long Island, Queens, and New Jersey. I didn't sleep very well Monday night (10/19) as winds picked up to close to 90 mph. I admit it, I was scared. My brother went outside to smoke and we saw roof shingles fly off my house and heard our neighbors tree crack before a huge branch split and fell. I was so concerned about a big tree next door coming down on our house. We lost power at 3:15 p.m. that Monday. The next morning I was relieved to see that no trees on our property had come down, but after we walked the neighborhood, we were shocked to see what our town looked like. It was a true war zone. Roads were impassable with downed trees and wires. I'm not talking trees that were cracked (although that did happen in places), but entire trees, ripped from their roots, pulled up by winds with the grass around them looking like carpet. It was also dangerous as there were so many power lines lying all over. An estimated 950,000 people on Long Island were without power.
My brother left for work the next day and did not come back until yesterday. It was Courtney, Gizmo and myself - the 3 Musketeers - staying at home without power for 7 days.

This is was what it looked like for us when we walked the dog each night. We needed to take our flashlights with us because we couldn't see too far in front of us. Houses were being robbed as people left to stay with relatives, generators were being stolen and there were reports of gas being syphoned while people slept. Because the ports of New York were closed, gas delivery was impossible. The average wait for gas was 3-4 hours. Thankfully, Courtney and I heeded the warning and filled our tanks before the storm. Unfortunately for others, as well as those with generators, gas was hard to come by. Courtney and I would bundle up each night in layers (sweatpants, 2 pairs of socks, T-shirt, hooded sweatshirt pulled tight around our face and gloves) and slept under many blankets. Sleeping wasn't really an issue, it was the time before that was hard. I was so blessed that the only issue we had was our roof - which will now have to be replaced. Our initial estimate is $5,300.00 and we're waiting on the insurance adjuster. There are so many families without anything, so for us to complain seemed selfish.

One of Courtney's professors didn't seem to care that there were so many without everything and even more without power - she had a deadline for her paper and I took this picture as she was writing it by flashlight, freezing cold hands and all.
The lowest it got in our house was 49 degrees and by Monday I was at my breaking point. Monday was 7 days without heat and while I was walking Gizmo by myself, I lost it. I began to cry and prayed to God that our power would be restored soon and our heat would come on. As I walked into the house, my prayers were answered and I cried like a baby. Our power came back on at 5:55 p.m. I know I am a strong person, but after one week of no heat, my body and mind were exhausted. From the very beginning of the storm, my thoughts went immediately to Mike. What would I have done if he were still at home with us? He needed power for his oxygen, nebulizer and processed food. There was a story just today in the newspaper of a man in a similar situation as Mike (he was a stroke victim). Even though he was on a priority list with the electric co., as of today, he and his family still had no power. What would we have done???
By Tuesday of this week, a good part of Long Island's power was finally restored. I believe 150,000 were still in the dark, but that was much better than 950,000. In my Town it was down to 700, then this happened on Wed....

 Nor'easter Athena hit and what was supposed to be a "dusting" of 1-3 inches turned into 6-8 in my area. The snow was very heavy and wet and more trees and lines came down. Those without power in my Town shot back up to 2300. Every house on my block was back in the dark, with the exception of us.
There is a certain measure of guilt that stays with you when you know your friends are back in the dark and neighbors are back in their cold houses. The "experts" are saying there is a rise in acute traumatic stress syndrome (more temporary than Post Traumatic) and I believe I am suffering from it. My stomach has been uneasy for he last few days because we're being told that if you have power, you may lose it so they can restore power to those without. I turned the heat up to 78 in my house "just in case". When the lights flicker, my heart starts palpitating. I have yet to restock my fridge for fear of having to throw away more food if my power goes out again.
NY finally decided to ration gas with the odd/even program and the gas lines seem to have gotten much shorter. I only waited 50 mins for gas on Wed. and Courtney only waited 12 mins yesterday.
I hear about the concerts and fundraisers being held and wonder if the people that truly need the help will get it. I will NOT donate to the Red Cross because that money does NOT go to the families affected. It goes towards future emergencies. It did very little for Katrina victims as many houses down there were never rebuilt. I will donate on a local level to help insure that Long Islanders, and the towns that meant so much to us will be rebuilt.
God Bless all those who were affected by Sandy.

The Process of Grieving

I am finally beginning to understand why, after the death of a loved one, they call it a “grieving process”. I just wonder how long this process will last, or if it will go on indefinitely.


I believe the steps of grieving often depends on who it was that you lost. When I lost my dad, I was devastated. He and Mike had been so close and it broke my heart when I decided to NOT tell Mike my dad had passed. At the stage of the illness Mike was in at the time, I just felt it wouldn’t benefit anyone. To this day though, I feel like I never fully grieved my dad’s passing. I tried not to cry in front of the kids or Mike, so where did that leave me. I needed to be strong for everyone else, when in fact I just wanted to scream! I think about my dad every day and I miss his strength and guidance. The life I shared with my dad and those experiences were completely different from those I shared with my husband. I’m absolutely sure the grief one experiences when they lose a child is even more difficult and deep.

My grieving process seems to be similar to that of the roller coaster I often experienced when I cared for Mike. There are days when I feel strong and happy and days when I feel so depressed and lonely. The day Mike passed I was beside myself, more emotional than I thought I would be. I had 11 years to prepare for that day but I found out that no amount of time is enough to “prepare”. As weeks passed, I began to come to terms with the fact that Mike was no longer suffering and there were more days when I felt comforted by the fact that Mike was with his mom, dad, brother and my dad - laughing and free of pain. His soul was free and he deserved it.

Now months have passed. Shortly after Mike passed, the kids and I handled his absence by saying it somehow felt like he was in the hospital during one of his lengthy stays. I imagine that that train of thought is why I am finding myself more upset lately. Reality has set into my subconscious that Mike is not in the hospital and he is not coming back. I find myself crying more easily these days and I try to stay busy to keep my mind occupied. It’s the “alone” moments, the part of the evening right before bed or the morning right before I awake that I find myself most teary eyed. Anything can and will set me off. For example:

I use hand lotion before I go to bed each night. The other night, I just couldn’t stop crying as I remembered how each night, before Mike went to bed, the kids and I would message his hands with lotion. Many nights have passed since the day Mike passed away yet I have no idea why that particular night affected me so much, but it did. The smell of the lotion, me lying in the bed where he used to lay, looking at the picture of Mike and I dancing on my night stand - all contributed to my nighttime breakdown and the reality that this grieving process is ongoing.

Breaking down at home is one thing, having something happen while I’m out in public is trickier. When Mike passed away, many wonderful people had Masses offered in his name at our church, most of them being at our favorite Rock Mass on Sunday nights. Going to Mass is always emotional for me, but knowing that I will hear Mike’s name being mention during the intentions makes it even emotional. I remember it was at the 6pm Mass years before when I noticed that Mike forgot how to bless himself. I knew it was a turning point for him in many ways and my heart broke because it was something that was so natural for him until that point. This past Sunday was another of the Masses offered for Mike, and my emotions were already all over the place. During the Sign of the Peace, the young altar servers came down to their families who were sitting right in front of us. I looked at Courtney because it was so cute, but then it came. The floodgates opened. Shortly after Mike was diagnosed, Brandon became an altar server and Mike was so proud. When Brandon first started serving Mass, I would often prod him along from our seats in case he forgot something. I was thrilled that Mike was able to see his son up there doing what he had done when he was Brandon’s age. Now, seeing those young boys come down to their parents, brought all those memories to the surface and my already emotional state was weakened. I thought I did a good job keeping my tears under control, but Courtney noticed and I was embarrassed to think of how many others had also seen this.

Beside these unexpected bouts of sadness, understandably, there will always be the situations and events where it will be natural for me to become emotional.

Sunday October 28th will be mine and Mike’s 24th wedding anniversary. It will also mark 8 months since Mike passed. I predict that it will not be a good day.

I am happy that the kids and I will be at my sisters for Thanksgiving. When Mike was with us, we always timed eating our dinner around Mike’s schedule. We would eat while he was napping, so we could all sit down together. This year will be our first without him and I will be thankful that I will not be at home.

Obviously, I am dreading Christmas this year. While the kids like keeping up traditions because it was Mike’s favorite holiday, I know we will all have trouble this year. My mind immediately goes to last Christmas and how “alert” Mike seemed to us - how we all took pictures with him, not knowing it would be his last with us. None of us knew that two short months after those pictures were taken, Mike would be taken from us. It will be hard for me to decorate and “celebrate” Christmas this year.

The holidays are expected to be emotional but it’s the unexpected moments that continue to catch me off guard. I am learning to accept this process no matter how long it takes. Please be patient with those you know who have lost someone they love. Everyone handles it differently - be kind. Even though funeral services may have been over some time ago, it’s never a bad idea to reach out to someone to see how they are doing. Their loss will always be felt.

Walk to End Alzheimer's 2012

Yesterday we participated in the Annual Walk to End Alzheimer's. Our team, henley's heroes, raised approx. $3,500.00 (and still counting!) and we could not be happier. Despite a tornado touching down approx. 15 miles from us, the rain and storms held out for the Walk and the day was a complete success. We even had bursts of sunshine, which I know was from all the angels above looking down over us. Courtney, Brandon and I were asked to speak once again during the Opening Ceremonies. As difficult as it was, we were honored and we will continue to do all we can to raise awareness and money to help find a cure for this disease.
Walks are held all across the US and I ask anyone who reads this to donate to their local chapter and help us by supporting their efforts in care and a cure.

 

henley's heroes

                                                                   Memory Garden

Happy 21st Courtney!

Today Courtney turns 21 - where does time go?! Amidst all the sadness these last few months, I am reminded of how blessed I am to have two wonderful children.
Like all moms I can remember the day like it was yesterday. My due date was August 28th and I was almost 2 weeks late. I was scheduled for a non-stress test the day she was born. Mike had left for work and almost immediately after he left, I started having contractions. I called his office and he had to turn around and come back home. It was raining that morning and I was concerned about Mike driving home - he was so excited and ready to meet our newborn. I got to the doctor about 10 a.m., was told I was only 3 centimeters, that I should go home, drink plenty of water and walk ALOT and come back at 12:30. When I got back to the office I was 5 cm and was told to go across the street to the hospital to be admitted and get ready. Mike made calls to everyone who had been as anxious as we were. Because I was two weeks late, I actually changed the recording on my voice mail each day to tell callers that nothing had happened yet. Now we were finally able to let everyone know "it" was happening.
After a few hours, I was given an epidural and the labor pains subsided. I remember my labor nurse telling me that I was the "strong stoic" type. I had not said a word or yelled in pain - compared to the woman in the room down the hall who sounded as though she was giving birth to an elephant. I remember Mike and the doctor watching TV while I was having contractions and being really angry about that. Seriously. Mike made fun of me when I had to push and I was so scared when I couldn't feel my legs for quite some time after the birth. I was petrified that the feeling wouldn't come back and I kept looking for reassurance from the doctors and nurses.
My family all came up to the hospital to see Courtney. The staff wheeled her past them in the bassinet as they took her up to the nursery. I remember Mike being very emotional that his parents were not there to share this most joyous moment with him. I remember being even more hurt for Mike that despite living only two blocks away from the hospital, neither his Uncle, Brother and sister-in-law or Grandmother did not come up to the hospital that night to be with him. Little did I realize then that this was just the beginning of Mike not hearing from his family (During the course of his 11 years being sick, both his brothers only came to visit him once and his Uncle and Grandmother also only once). I realized that no matter how happy Mike was with seeing his newborn daughter, it could not take away the sadness he felt knowing his parents were not there to meet their granddaughter.

Courtney was born on 9/5/91 at 7:14 pm. We were, and continue to be, so very blessed!

HAPPY BIRTHDAY COURTNEY!

California Here we Come...

This past Monday Courtney, Brandon and I came home from our trip to California. 11 days out of the house, away from the daily stresses and routines that were really beginning to create more stress in our lives. This trip was not without it's rough spots. I've seen an anger in Brandon that concerns me - especially since he voiced his opinion to me a few times how angry he was that I did not call him IMMEDIATELY upon Mike's death. I wonder whether this anger will dissipate or whether it will present itself in other ways. But despite those rough spots, I believe we all enjoyed our time away.
Even though we were in California, and our days were filled entirely each and very day - there were more moments than I anticipated of feeling Mike's absence and missing him SO much.

 While I was parasailing on Catalina Island I started to cry because I was so high up in the sky I felt myself closer to Mike. I had a conversation with him that immediately turned to tears.  The peace and quiet up there was deafening and I felt myself feeling truly alone. The realization that this was my future was emotional. Walking around Disneyland I thought of Mike's first time at Disney World for our honeymoon.
 I had been there a few times before, but he had never been, and I enjoyed each and every moment watching him revert back to his childhood and enjoy all that was around him. My mind immediately went to the three times we had taken Courtney and Brandon there and how excited he was at seeing the kid's reaction to the spectacle around them. We saw Cirque Du Soleil - which Mike and I had taken the kids to together. Although the shows were different, I remembered how much he loved the acrobats and clowns. Alcatraz would have been right up his ally and listening to Brandon complain about going to see "the stupid Redwoods" I heard Mike's voice saying the same thing. I was very upset with Brandon that day because he gave me such a hard time about going to Muir Woods to witness the beauty of nature, but I guess it was because I knew I would have had an equally difficult time with Mike. The trees were beautiful, but not a place he would have thoroughly enjoyed being.

Seeing all the families walking along Pier 39 just brought a deeper sadness over me, but I did my best to enjoy the moment with the kids, not knowing when the next time would be that we would be together like this.
We arrived home at 2:40 a.m. on Saturday to find that my BIL had spent a week at our house while we were away, painting and organizing. Four days later and I'm still in somewhat of a shock that he would take the time to come in from PA and work so hard for us. What did we do to deserve anything like that? He wasn't the only one who worked - my brother helped as well as my mom. My sister and older niece conspired from PA - the entire family was involved in this conspiracy spearheaded by my BIL. The kids and I are still trying to find things. He organized so well, we feel like we just moved in.
This Saturday we'll be moving Brandon back into school. His classes start on Monday. Where did the summer go??

I was looking forward to the summer with the kids to talk about and try to heal from the pain of Mike's passing. Instead, Brandon spent most of the summer with his friends and Courtney worked alot. I didn't get to talk to them as much as I would have liked, but I also didn't want to push them any more than necessary. We visited the cemetery again yesterday before Brandon went back to school and we look forward to the day when the headstone will be completed.

This past weekend, the kids and I held our Annual Lemonade Sale for Alzheimer's - it was also 5 months since Mike passed. The "anniversary" date made it that much more important to us, which is why we had a very rough start to the day. Tensions were very high as we considered canceling the sale. We had always been blessed with beautiful weather, but this year we woke up to the sound of thunder. The forecast was not good and I even called upon my very own personal meteorologist (nephew Steve) to see if he could give me anything optimistic. He couldn't. It called for a 30% chance of scattered thunderstorms all day. Added to the fact that it was 5 months since Mike passed, my sister and her crew came in from PA to help us. They never had the opportunity to experience one of our sales and we thought it would be fun for all of us. This combination was an even bigger reason why we wanted this day to be a success. We listed the start time as 11:00 a.m. Finally at 10:40 I made the call to "go for it". Courtney had baked all day on Friday and I knew if it wasn't that day, we wouldn't be able to have it this year. Despite reports that there were torrential rainstorms (with flooding) only one town over from us, we held our sale the entire day with only 15 mins of a slight mist. I am so pleased to report that we made $1,048.29 and counting.......... For the first 1/2 hour, no one bought anything, they just stopped and gave money. My sister was on the opposite corner from me and I looked at her and realized that neither one of us could hold back tears. It leaves me speechless that there are SO MANY poeple out there wanting to help. The entire day people would stop to donate and tell stories about their loved ones who had the disease or passed from it. Many people thanked US for doing what we did. I am absolutely positive that we had help from above that day - to keep the rain away from us so we could have a successful sale.
Each year after sale, I have a BBQ for Courtney and Brandon's friends who spend the day helping us raise the money we do. I had just finished cooking the burgers and dogs, their friends just got their food and just sat down to eat when the heavens finally opened up on us. After a mad dash into the house to finish eating and play some board games, all were fed and satisfied. The rain had stopped about an hour later and they all went back outside to enjoy the rest of the night. My children have a great bunch of friends.
The concern for having the lemonade sale last weekend stemmed from the fact that this weekend will be crazy as the kids and I will be packing for our 11 day trip to California! (The Saturday after we get home, I will be bringing Brandon back to school in CT). We are looking forward to this trip very much, but it is understandably bittersweet. I doubt we will ever be able to take a trip like this ever again, so we will be savoring every moment. Five days in Los Angeles (Disney, Cirque de Soleil, parasailing/zip lining, Walk of Fame etc) and then 5 days in San Fransisco (Alcatraz, Muir Woods, Hauted mansion, Ghiardelli Square etc). I haven't been saying "I can't wait" because I know in the blink of an eye it will all be over as well as the summer. I look forward to making happy memories with Courtney and Brandon. With Courtney graduating from college next year, I have no idea when I will have this time with them again.