Thursday, May 23, 2013

Courtney's Graduation

This past Sunday, May 19, 2013 Courtney graduated from Hofstra University. She graduated Magna Cum Laude, with Honors and was selected for Phi Beta Kappa. I could not be more proud of her accomplishments and only wish that she felt just as proud of herself.
The weekend was filled with different ceremonies for each of her awards and while I knew Mike was with us in spirit celebrating the moment, I could not help but become emotional knowing he was not physically with us.  Courtney had mentioned that he had not been with us at other milestones, but I felt it very differently. Even though he had been unable to speak and could not attend functions, at the end of the day I was still able to go home to him and share the details. It kept him "involved" and allowed me to share the accomplishments of our children with my husband. On this very important day, I missed him terribly. I kept replaying the day of Courtney's birth in my mind and how SO very proud he was to be a father and how much he looked forward to seeing them both  grown up. Like other parents, we often wondered what our children would want to do when they "grew up", what profession they would choose and how they chose to live their lives. Mike had lost his parents at a reasonably young age (23 and 25) and he wanted to be THE BEST parent ever to his children. He wanted so desperately to be there for them. All this was running through my mind as I watched Courtney walk across the stage to graduate.
I could not have been more proud of her. Despite all the nights she spent at the hospital with Mike, all the time she helped care for him, all the time her mind was elsewhere as she watched Mike's health decline, she still excelled in college. She could have very easily gone down the "poor me" road and given up trying, but she didn't. I guess it was much like our attitude in caring for Mike at home. It could have been much easier had we made another decision, but that was a road we chose not to take. There were days when it was beyond anything we could have ever imagined, when we fought to hold it all together, but we continued to push forward and fight.
I am so proud of both my childen and can't wait to see what the future holds for them. 

Tuesday, April 9, 2013

Mike's Legacy

While it's easy for me to say that my children are one of Mike's most important legacies, I was touched today in the oddest of places to learn of another.
I went to my doctor for my yearly check-up (yeah 52 pounds lighter!). As I was checking out, the receptionist asked me how my husband was doing. She quickly reminded me that she had remembered our story when it appeared in Newsday. I do remember her talking to me about it right after it came out. It was the usual conversation about how shocked she was about Mike's age when diagnosed and how touched she was by the care the kids and I gave him. I made it through the sentence when I told her that Mike had passed away last February. She offered her condolences and proceeded to tell me about a friend of theirs who was just diagnosed at the age of 46! (It still amazes me to this day that not enough attention is being paid to the increase in number of people being diagnosed with Young Onset Alzheimer's Disease. I won't go into that here, but I will save my frustration for our annual visit to Washington DC in 2 weeks. This is when I vent to our Senators and Congresspeople).
The receptionist started to tell me about a wonderful day program this woman's husband takes her to. She said they play basketball and dance. It's geared toward younger people with Alzheimer's. Here is where I choked up.
I explained to her that this program was inspired by Mike. When Mike originally went to the regular day program at the JCC in East Hills, he did not fit in. Most patients were older, so they watched Lawrence Welk and played word games. Needless to say, Mike resisted going, and after only a short time, the program director knew something had to be done to help all the "Mikes". Fast forward a few years and Let's Do Lunch came into being. Mike's illness progressed very quickly and he was never able to take full advantage of the new program, but he was the inspiration. It comforts me to know that Mike's suffering was not in vain. Now other families can rest easy knowing their loved ones are in a day program specifically developed for them.
I am so humbled knowing that another family's life has been made a little because of Mike. He will ALWAYS be our hero.

Friday, February 22, 2013

Genuine Happiness for Others

For the 11 years Mike was sick, we very often heard about friends and family taking trips, or even doing what seemed like mundane things to them, but would have been treats for us, that we were never able to do. We were always very happy for them. Just because we weren't able to do things, didn't mean that we begrudged others from doing fun things. In fact, we often lived vicariously through them. I can honestly say that I was always happy when people close to me, true friends and family, were able to have fun and enjoy themselves.

Unfortunately, we are finding that not everyone feels the same way for us. Since Mike passed,  the kids and I have been able to do things we were unable to do for 11 years. I would like to know that those around us can be genuinely happy for us, but this is not always the case. For years Courtney would hear all about her friend's trips, cruises all over the world and she would be a true friend and be happy for them. Now every time we have the opprtunity to go somewhere or do something, they make comments or even just ignore her excitement.

I try to tell her not to worry about what others think or say, but sometimes I can't follow my own advise.
A few weeks ago, Courtney put her name in to win/get tickets to the Live! with Kelly and Michael After Oscar Show in LA. Last Thursday she found out she was chosen. At first we thought it would be  impossible to go. She needed to take 2 days off from school and work, I needed to take two days off from work -  and then there was the cost. Courtney even tried to reach out to her friends to see whether any of them wanted to go with her. They all declined. Even after being asked, and had the opportunity to go with Courtney, they cannot stand the fact that Courtney will be in CA the day of the Oscars and attending a TV show that showcases Oscar winners. Instead of being good friends and being happy for her, they are jealous. Yes I understand this is a normal emotion, but when they KNOW that Courtney was always happy for them, despite years of her not being able to do so much  - SHAME ON THEM.

I also often get the hesitated reactions when I share exciting news. Truthfully.... it hurts. I'm not sure they  realize it when they react this way, but just once I would love for people to say , "Good for you. Enjoy yourselves" and have them really mean it. Normally what comes next is, "we haven't been away in years", "I wish I could do that" "maybe next year I'LL be able to go away".

Shame on anyone for begrudging my children the opportunity to do anything. More than most people, they deserve to be happy. Their future is unknown due to the genetics of Alzhiemer's Disease. They deserve happiness and those around us who love us and care about us should know that. We were always happy for you, please now be happy for us.


Friday, January 18, 2013

Daily Struggles

The kids and I got through the holidays as well as I expected. Christmas was quiet as it was just us. It's times like this when I wish I would have been born into a larger family - or that our extended family stayed in touch. I miss the days when I was younger when we would visit each side of the family - one side on Christmas Eve, the other on Christmas Day. This year, our Christmas Eve was like any other night. We did get to go Midnight Mass for the first time, which was really nice. New Year's was a different story. My sister and her family came in, as they usually do, for our annual New Year's bash. I use that term loosely, but we have so much fun nonetheless. Even though it's just us, we plan our menu and activities very carefully and come midnight you wouldn't want to live near us. We are loud and usually covered in silly string. The craziness did not take away the emotional aspect of the clock striking midnight. Every year, for 11 years, the kids and I would quietly go into Mike's room, give him a kiss and gently wish him a Happy New Year. Our night felt incomplete without this routine.

As it nears the one year anniversary of Mike’s passing, I have become understandably more melancholy. Mike was ill for so long, but I now find myself missing the “well” Mike more than I ever have. I think so much about his strength, his smile, his laugh and the way he always seemed to calm my fears. Honestly, I’m getting tired of doing everything on my own. I have been so stressed lately with “life” stuff and wish so much that I had someone to help me. I need to continue to make important decisions on my own: handle all the finances, managing all the paperwork for the kids education, the house repairs/problems and upkeep, and the car to name a few. Right now I am juggling so many major issues that I have been losing sleep each night.

Financially, we were in bad shape when Mike was alive, and that was WITH his social security disability. Without it, I am forced with live off his Life Insurance Policy. When we opened our policies, the amount seemed like so much to us. After all we had just gotten married, we had no children and had no idea what our future would hold. Now, as I take money out each month to pays my bills and see the balance going down I am beginning to panic. Just this weekend, I purchased a new “used” car. I was driving a 2001 Chevy Venture with 108,000 miles on it. It had treated us very well through the years, but I have been having a problem with the “check engine” light and it would not have passed inspection. Added to that the bearings needed to be replaced and my transmission was going. I could not see putting a few thousand dollars into this car when I could put it toward a newer car (My pleas to Ellen DeGeneres fell on deaf ears (LOL) All logic told me that buying this car was the right decision and my beautiful children constantly reassured me that I was doing the right thing. After two months of researching on line and pulling my BIL in for his expertise, I gave in and visited car dealerships last week. After test driving three cars and comparing all the important info (Mileage being the #1), I decided on a car. I know I should be enjoying the excitement that a new car brings, but I have been nothing but stressed. This car took a big chunk out of our savings and that’s all I can think about. I know in the long run it will (hopefully) save me so much in repairs, but as with any car, new or used, NOTHING IS GUARANTEED. Beside the financial impact, the kids and I are strangely dealing with an emotional loss. Whereas most people tend to lease cars and keep them 3-4 years before trading in for something new, our van was with us for 12 years!! It was an extension of us. Mike and I bought it together immediately after he was diagnosed. There were so many fun memories as well as sad memories in that Venture: A 10 hour trip to PA (that should have been 3) that left 6 of us giddy, to bringing Mike into the car when he got agitated while we were out. So many trips back and forth to the hospital and the car ride to pick up our new puppy at the time - Gizmo. The kids each learned how to drive in it. It sounds silly we know, but we will miss that Venture. I decided to donate it to a Veterans Group.

Along with dealing with the car issues, I’m still dealing with my homeowners insurance company about my claim for roof damage from Hurricane Sandy. Between going back and forth with the adjuster as well as the roofer, I feel totally out of my element. The insurance company wants to give me only enough money to cover the BACK of the house (since that was where all the damage happened), while the roofer said the house would look ridiculous being ½ and ½ - since they don’t even make the shingles that are currently on my roof now. Adding insult to injury, the original claim check that the insurance company sent out was made payable to Mike and I (even though my local insurance agent was notified when he passed away) - so I had to fax his Death Certificate to them in order for them to reissue a new check. Another reminder of all that I lost! Bottom line, I am still waiting on the insurance company to decide whether they will cover the replacement of my entire roof.

It’s also that time of year when Financial Aid forms need to be filled out for college. This reminds me of my credit report that I needed to work on that I never did. If I had a spouse to share some of the responsibilities, I would not feel so overwhelmed. There just seems to be so many major issues that I am trying to work on right now. My sadness comes from the fact this is my reality now.

Still, I remain steadfast in my FAITH. When I think about all that we have been through and how God has been with us every step of the way, I remain hopeful. Surely there were times when I didn’t think I could make it through one more day, but the fact of the matter is that I did.