Life Goes On

Mike has been restless at night. I am concerned that he is uncomfortable and not sure what's bothering him. He keeps me up with this because when he shakes, it shakes the whole bed. I try to calm him, but I'm not sure if it helps. I spoke with the hospice nurse, and she said the watch it for a few days.
Brandon turned his ankle again on Wednesday night. I had to take him back to the ortho because he thought he broke it AGAIN. It swelled almost immediately. Thankfully, there was no break, "only" a sprain. Now we hope that it recovers in enough time for his surgery on Nov. 24th. He will not be able to particpate in sports or anything else that could harm him until the surgery.
I continue to be amazed at the outpouring of letters and cards, e-mails and FB posts. This disease has alienated us from our oldest, dearest friends (and some family), yet total strangers have reached out to us in so many ways. Their support means the world to me. Right before the Newsday article appeared, I was probably at the lowest I have been since Mike was diagnosed. I felt so alone and lonely. People I had thought I could count on had disappeared. I thought if THESE people couldn't be bothered, why would anyone else? I prayed everyday for strength and guidance. I prayed that some burdens would be lifted.
God heard my prayers and sent me some new friends. People that before this article, were strangers to me and my family. People that struggle themselves, had reached out to us. Some sent donations, yet others sent cards and letters and words of encouragement. I NEEDED this SO MUCH. I know there will come a day when the mail will stop and dinners will no longer be delivered. Life takes over and people fall into their own routine. But that's OK. I KNOW that my family and I have touched many people, we've given hope to some people and a renewed faith to others. We've raised the awareness for this hideous disease, which is EXACTLY what we wanted. In return, I know I have many people praying for us and I know we are not alone.

THANK YOU EVERYONE....

Extreme Validation

Back in 2004, my family was nominated for the show, Extreme Make-Over Home Edition. I didn't know it until I received a call from one of the producers. They called a few times, came to our house a few times (we had to scramble, often at the last minute, to NOT be at home, all the while we had Mike who was sick). They spoke on the phone to Courtney and Brandon and asked: what they would like done, how the would like their rooms and where they would love to go. As fast as they came into or lives, they were gone. No explanation. I never got over that, not for me, but for my children. How could the producers take a family in such turmoil and heartache, give them hope, and then just dump them?? I was SO ANGRY about what they did to Courtney and Brandon. They were so devastated from losing a little of their dad each and every day, and then they thought they were going to get a new house. The excitement brought a new hope to them....... then nothing. I never had anything against the other families that DID get a make-over, but it was the way in which my children were treated that made me angry. People who knew us, all knew we deserved it. It was something I could never get over and could never understand.
Fast forward 5 years and our story appears in Newsday. My friend gave our article to her cousin to read and this girl said, THAT'S THE FAMILY THAT DIDN'T GET PICKED FOR EXTREME MAKE-OVER???!!!!!
Strangely enough, I felt validated. All our friends knew we deserved it, but to have a stranger say it, after reading our story, I felt better. I can't explain it, but it was my "Extreme" validation. This person who didn't know us from anywhere, was just as confused as I was. I felt good.
Does that make sense? Who knows, but I finally feel better.
Mike is doing OK today and Brandon went back to school. I just found out that some parents from the grade school that Courtney and Brandon attended will be holding a garage sale this weekend with the proceeds coming to us. I only say this as another way to thank everyone. I may not know some of the people doing it, and even those I do, I may not get to see them. I just want to thank you ALL, from the bottom on my heart, for your kindness and caring.

Wish for Good Health

Everyone is sick today. Well almost everyone.....
Brandon's throat has been bothering him and I made him stay home from school today. He wanted to go so bad, but I made the parental decision, which believe it or not, he was not happy about. The last time his throat hurt this bad, I had him at the hospital with the swine flu (back in the spring). He's the ONLY one in the family that has not had the regular flu shot, so I am concerned.
My mom didn't come today because she is sick also. She has had some kind of bacterial infection for months that just does not seem to go away, despite antibiotics like Cipro. Her problem began last year when she somehow caught MRSA from Mike. Her arthritis is also been acting up, so she's miserable.
Mike woke up "stuffy" today, so I'm keeping an eye on that. I'm hoping it was just from the heat in the house, even though I DID keep the window open a little. All it takes is something little, so I always get nervous.
I'm exhausted. I attempted to go to bed early last night, but that didn't happen. They say to be careful what you wish for, but I just wish for one or two good night's sleep , as long as everyone remains healthy and my good night's rest isn't a result of an illness.

I Miss My Computer

I HATE not having a working home computer, especially since our story ran in Newsday. Many people have been e-mailing me, blogging me and posting on FB, but without a computer, I can only respond from work. Right now I am on my lunch hour trying to get many responses out. Sorry if you've contacted me and haven't heard back, but this is why. Just like everything else in the world, we don't know how much something means to us until we don't have it.

Last week, I was able to watch and read a few other stories in Newsday. As I read about poor Mr. Rowe and his daughter, I can remember all too well when Mike was at that stage of the illness. My heart broke for the daughter who just wanted to care for her dad, but like me, and all other caregivers in the home, she was met with obstacle upon obstacle. When I read about the Deckers, I watched in awe as Mrs. Decker's health declined. What amazes me to this day is that Mike's health has been like that numerous times, but each time, he rebounded - hence our name for him: The Energizer Bunny. While it's our cute pet name for Mike, I often wonder what God's plan is. It is apparent that Mike is still needed here for something. He has bounced back, when so many others were ready to throw in the towel. Why is that? I look into his eyes and wonder what lesson will he be teaching us that has not yet been taught.

My sister also helped solve a mystery today. Since the story ran, I was getting mail at home, from some very kind people, but I could NOT figure out how they were gtting my home address. It appears that when you go onto the White Pages and put in a person's name and town, their full address comes up. Who knew - but that explains alot.

Another Crazy Day

Mike's friend Tom came over tonight to visit with him. He's Mike's ONLY friend that has kept visiting Mike all these years. He's our angel. My mom isn't feeling well even though she's been on Cipro for multiple infections as per her dermatologist. I fear she may need IV antibiotics. She's been sick for so long. Courtney came home today to help me with Mike because Brandon was out with his friends and my brother is sick with his CVS (cyclical vomiting syndrome. NOT fun). I had to have help getting Mike into bed. The problem arose when Brandon called to say that he decided to stay at his friend's house for the night. I called out a favor to my good friend Mary. Her and her son came to sit with Mike so I could get Courtney back to school. On one hand I'm upset with Brandon for making these last minute plans, on the other hand I am happy he's getting out.

Calls continue to come in from old friends as well as people we've never met. I'm THRILLED that our story made the impact it did. The Alzheimer organizations here on LI have been getting more calls from people for help and resources. I am happy that we have been able to help people, who otherwise may have never reached out. For those of my "blog family" here on LI, look for the 2nd part of the series this Sunday. For those not in the area, you can still check it out at www.Newsday.com.

Meet Mike

Before I begin writing about the subject I intended, I must share my morning "emergency". My mom and Walter had just gotten here around 7:15 am. Brandon was leaving to catch his bus and as usual, we let Gizmo out into the backyard. Two minutes later, he comes running into the house sneezing uncontrollably. I knew it was trouble when he came right up to me. While wiping his nose, I saw blood. Just 5 mins earlier, I had been upset with my mom for coming over this morning (she didn't feel well), but now I was thankful to have 2 extra sets of hands. As Walter held Gizmo's body and my mom held his head, I found the culprit. I proceeded to pull a 4 inch long piece of bush out of his nose. His agitation almost stopped immediately, but it took me another 1/2 hour to calm him down. Times like this that I think - what if I had to take Gizmo somewhere as an emergency and my mom was not around?

On to my main thoughts-
After reading so many e-mails and posts, I was thankful for all your words of encouragement and support, but at the same time, I don't want anyone to forget the person at the core of this story.....Mike. Mike is the most caring, unselfish and loving person I have ever met. This disease robbed him of everything he loved and all you wonderful people will never know the real Mike. Let me share some thoughts with you -
Mike's favorite baseball team is the Yankees (a troubling situation, since I am a BIG Mets fan), his favorite football team is the Pittsburgh Steelers - Why you ask? He told me that becaue when he ws younger, he loved the color of the uniform. He loves Led Zeppelin, Genesis, Cherry Poppin Daddies, The Dave Matthews Band and Blues Travellers. He drank coffee all day long. He was a great bowler, he loved to go bike riding and play baseball/softball. In his quiet time, it was rare to see him without a crossword puzzle. He loved Tom Clancy books and his grandmother's cheesecake was THE BEST, in his eyes. He would do anything or go anywhere for anyone at any time of day or night - no questions asked. When his mom was in a nursing home with EOAD, he would go almost everyday after classes at St. John's to visit his mother, and we would go every weekend. He adored his mom and missed both his parents terribly. He was a good "doodler" and when he was young, he played the accordian. This gave him the uncanny habit of playing the piano one handed. He always dreamed of owning a 1965 black Corvette. He worked REALLY hard and was very conscientous and dedicated. His favorite restaurant was Koenig's in Floral Park where he loved the Yaeger Schnitzel with a Spaten.

I love Mike and miss him everyday. I just wanted to share with you the Mike I fell in love with BEFORE this disease took over.

Donations

This is a difficult post for me to write (since the main reason I decided to take part in this story to raise awareness) , but I am ONLY doing it because many people have asked how they can help, and where they can send donations. I have a VERY difficult time accepting help. I don't want any of you to think I am being rude by not getting back to you, but I have been in touch with Newsday because it appears that they have also been getting requests on where to send donations. I am waiting to hear back from the reporter as to what they plan on doing. As soon as a plan is set in motion, I will advise. God Bless you all.