Memory Walk Events

This coming Saturday, we will be walking for the 3rd time in the Alzheimer Association's Memory Walk. My goal was to raise $1,000.00 (we raised $650.00 last year). To date, we have $1,300.00. I am THRILLED.

Courtney recruited her friends to walk with us this year. They came by on Saturday and tie-dyed shirts so we will all have our official team shirt. We decided on the tie-dye theme a few years ago because we thought it was appropriate for Mike. He's young and he should be represented as such. Before we tie-dyed, Courtney and her friend set up a "Refreshment Stand" on our corner to raise more money. I was hoping to raise $100.00. Much to our surprise, people were very generous and we raised $258.00. After all that hard work, I BBQ'd for Courtney and her friends. For dessert, we had cookies, brownies and a surprise birthday cake for Courtney's 16th birthday. It was 9/5 and I felt so bad that I couldn't give her a party that she deserved. She always wanted a cake with her picture on it, and that's what she got. She was excited and surprised and I was happy that her friends were there to enjoy the moment with her.

Pray for good weather on Saturday. Instead of the 7 people that walked last year, this year we will have close to 20. We wanted to make a statement and we hope we succeed.

I hope to walk every year until a cure is found. Thank you to all of those that helped us exceed our goal. Your love and support is what keeps us strong.

Time

It's hard to believe that next week Brandon will start his orientation for 9th grade. Where does time go?

Courtney was 9 and Brandon was 7 when Mike was diagnosed. They are now 14 and 15. Their entire life has been dealing with Alzheimer's Disease. I will ALWAYS wonder if I did the right thing in keeping Mike at home with us. Did I take too much time and attention away from the kids? Could I have done more, had Mike's 24/7 care not been in my hands? I question this always, but the kids always tell me they would have had it no other way.

We have been so busy around the house this summer, I felt like I haven't seen Mike alot. We have spent many hours in the back and front yard, trying to make our property not only look nice, but REALY nice. We all need something to feel good about. We are also painting Courtney's room (Brandon's was re-done earlier this year). Actually, Courtney has so far done all the priming on her own and I'm VERY proud of her. We have also been blessed to receive a "gift" of carpeting, but before it can be installed, we've had to rip out the existing carpeting. My hands have the bruises and cuts to prove it. It very difficult to remove carpeting from stairs :(

I found out today that our weekend aide will not be in on Sunday and we will have someone else for only 1/2 the time. It's supposed to be Mike's aide from 2 years ago and if he does show up, it will be interesting to see Mike's reaction to him. Because the aide will only be working until 2pm (instead of to 7pm) I will have to care for Mike. Of course it will be difficult because the weekend is the only time I have to do everything, but at the same time, it will be my much needed re-connection with Mike. Since I feel I haven't been spending much time with him these past weeks, it will give me the one on one time I need. I hope he will enjoy it as much as I do.

Summer Update

I am relieved to say that all remains "status quo" with Mike. I recently took a week to do some day trips with the kids. We went to Splish Splash (a water park), into NYC, to the beach, to the movies and lunch and got their uniforms and books and supplies for school. All pretty everyday things, but we all enjoyed this much needed time away. Each time we went somewhere, I would have an overwhleming sense of sadness. Mike should have been there with us. He LOVED the water and the city. It just isn't fair that he could not be a part of our lives doing the things I know he loves. I very rarely say that things are "unfair" because who am I to think I'm above everyone else? Who would this disease be fair to? Exactly. But recently, I have been having a difficult time emotionally. I guess as the kids are getting older, and I see the young adults they have become, my heart aches that Mike does not fully understand. His children were his life and he would have done anything for them. They were his VERY FIRST concern when he was diagnosed. Now here they are in High School, maturing into beautiful, caring human beings, and he cannot appreciate all that they are. I pray that he knows, somehow, how proud he would be of them. They have not let him down, and for that I couldn't be prouder.

We are gearing up for our annual walk in the Alzheimer Association's Memory Walk which will be in Sept. Courtney has recruited a bunch of her friends to walk with us so we can make a bigger statement. We hope to match our goal of $1,000.00.

That Special Smile

This picture was taken of Mike 2 weeks ago. It was a beautiful sunny Saturday and we decided to take him outside. It's somewhat of a project that requires perfect timing - it has to be in between meals, when he's awake, when it's nice outside (not too hot, not too cold). It was a perfect day and we took advantage. It was evident by his smile that he loved it also.

It's amazing what we all take for granted.

We appreciate EVERY smile we get from him. His smile lights up the room, wherever he may be.

Everyday is a gift that we truly appreciate.

Summer

The kids have been working at a summer camp in the grade school that they graduated from. Courtney has kids going into 2nd grade and Brandon has 4th graders. Let's just say, the kids keep them very busy. There are about 20 kids in each group and 2 counselors. When it's hot and humid, it's difficult, but otherwise they do different activities and crafts throughout the day. Camp is only for the month of July and it ends at 1pm, so it gives them a chance to relax the rest of the day. Of course, the pay at the end of each week, however small it may be, doesn't hurt either.

Courtney went for her orientation for being a hospital volunteer already, but today she has her "interview" to determine in what area of the hospital she will work. She wants to request the floor that Mike was on for a month because the nurses and aides were all so wonderful. I hope she gets it.

I will be taking a week off in August to do things with Courtney and Brandon. Our vacation days are over at this point (with Mike's health so unpredictable) but I thought I could do "day trips" with them. We have a few things lined up and they should have a good time - hopefully.

Life in Limbo

I was talking to a friend the other day about the fact that Courtney will be turning 16 in September and will be able to get her learner's permit for driving. The realization that it will be ME that has to teach her to drive, hit a nerve. I mentioned to my friend that since I was a "single" parent, it was just one of the experiences I would get to share with my children. Then it hit me, I am NOT a single parent. My husband's "body" is here with us, but his "person" is not. It was then that I realized that for the last 6 years, the children and I have lived in limbo.

We cannot and will not mourn the loss of Mike, because Mike is very much with us. Yet, we do not get the chance to share all our special moments with him either. My children have gone through confirmations, graduations, birthdays etc. with their dad, but at the same time WITHOUT their dad. We can never be quite sure what emotion to show, because our lives are in constant limbo. We are happy in the moment, but sad when we realize that Mike is not with us.

Don't Give Up

It's truly amazing to me how God works. Just when I think I can't do this anymore, he gives me signs.

One of my favorite singers is Josh Groban. His songs always give me renewed strength. My past favorites of his are: You Raise Me Up and You're Still You. I found a new favorite just when I needed it..... You Are Loved (Don't Give Up). The kids got me tickets to see him on July 25th and I look forward to that night (although I still don't know how I will manage it with Mike). I share the words to that song with you today.
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Don't give up, It's just the weight of the world. When your heart's heavy I will lift it for you
Don't give up, Because you want to be heard, If silence keeps you I, I will break it for you.

Everbody wants to be understood, Well I can hear you
Everybody wants to be loved, Don't give up - Because you are loved

Don't give up, It's just the hurt that you hide, When you're lost inside, I, I'll be there to find you

Don't give up Because you want to burn bright, If darkness blinds you I, I will shine to guide you.

Everyrbody wants to be understood, Well I can hear you.

Everybody neeeds to be loved, Don't give up.

Because....you are loved.

Don't give up, It's just the weight of the world
Don't give up, Everybody needs to be loved.

You are loved.

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As I was listening to this song on my way to work, a truck passed by. A regular delivery truck, but what was weird about it, was that on the back, for no apparant reason, it was written, "The Lord is my light, the Lord is my strength". Isn't that weird? On the back of a regular delivery truck to see that written. Yes, he works in mysterious ways, it's nice to know that I am not alone.

YOU CAN HEAR THE SONG BY CLICKING THE LINK TO THE RIGHT. ENJOY.