Holidays

“Through the years we’ll always be together..if the fates allow,
Hang a shining star upon the highest bough, and have your self a merry little Christmas now”

For three days in a row, those were the words I woke up to as my clock radio went off. I have been struggling for the last few weeks regarding the upcoming holidays. I took this song playing repetitively as a sign from Mike that he would be with us and that I should go ahead and enjoy Christmas.

With the passing of Thanksgiving and the beginning of the “Holiday Season” I had been finding myself in a constant state of struggle. Sometimes I feel that because the kids and I, to the outsider looking in, seemed to handle Mike’s illness so well for so many years, everyone feels that we are handling his passing the same way. I sometimes think that because outsiders saw us living our lives, going to work and school and laughing, instead of walking around in a constant state of despair, they maybe thought that we were more than “OK”. The fact of the matter is, we’re struggling. My children do not have their dad and I do not have my husband.

Even though Mike was sick for 11 years - 8 of those years he was unable to walk and talk - we still had him home with us. We could touch him, talk to him and on the lucky days, see him smile. Emotionally, we don’t have that now.

I struggle on all levels with the holidays. I always found it difficult to “celebrate” Christmas while Mike was sick, but I found myself doing everything I could to make it special for the kids and Mike (it was his favorite holiday). As in years past, Courtney again is especially very much looking forward to Christmas. When I talk about my dismay at decorating, shopping etc, she gets upset. I know she wants to carry on in her dad’s footsteps, and enjoy every minute of the holiday, but I’m struggling. I want to enjoy everything, but the reality is I’m having a hard time.

I’ve never been one to feel sorry for myself. So many people have it so MUCH worse, but the truth of the matter is, I am a widow. I no longer have my husband in my life. The man I thought I would spend forever with is gone. I think back to last Christmas when I had a gut feeling that it would be Mike’s last. He looked worse than usual, yet when we took pictures and opened gifts, he seemed so “awake” and alert. I wonder whether he knew it was his last and whether he was trying to take in every single minute.

Since Mike’s wake and funeral, only a handful of friends have stayed in touch, which was the constant while he was sick. The funeral was crowded with old co-workers and friends, all sharing stories of the Mike they all knew and loved. The kids and I very much appreciated everyone attending and sharing their stories, but in the months since, only a few have remained in touch. The others have all continued on with their lives..

The holidays are already bringing some difficult emotions to the surface, emotions that some seem to forget that we continue to struggle with. The realization, that unbeknownst to us, last year was Mike’s last Christmas and then the reality that this will be our first Christmas without him. No doubt, the kids and I will survive. Our faith has carried us this far and I know it will continue to carry us through whatever God’s plan is for us. Mike’s love will remain with us and his spirit will never leave us. And whether that song from my radio was a sign from Mike or not, we will do our best to honor his love of Christmas and everything it means.

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)