Let the best team win.

 

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I have tears streaming down my face. Not because I am frustrated, upset with Jim or the kids.

Because I feel the support and love and caring of others.

Tonight I was actually just wasting time. Time I usually don’t have. I was scrolling through Facebook, catching up on absolutely nothing important. It was a guilty moment of pleasure that I seldom get these days.

And I saw a post that went to my core. A post that caught me off guard.

Flashback a few days. A couple of mom’s from Brad’s baseball team, which just came together in August, told me they wanted to do a team for the upcoming Walk to End Alzheimer’s. They asked when it was. They said they wanted the boys to be involved because we didn’t have games that weekend. They said they would look into it. I told them I would send them some info. (I haven’t).

Flash forward to tonight. There was a brand new team to our local walk. Brad’s team. 10 and under. Mom’s I know and Mom’s I don’t really know. People I have just met.

People who have lives. Busy lives just like mine with multiple kids doing multiple activities. Kids on teams that are selling stuff to raise money to participate in tournaments. To have a weekend off from games is a luxury. Why would they commit themselves to ANOTHER event? And one they have to FUNDRAISE for? Between schools and ball teams, I feel like I all do is ask people to buy stuff, and then I have my requests for donations to the Alzheimer’s Association. I have a team for the Walk to End Alzheimer’s. A team that I have not done one thing with. They are friends that support me no matter what and who are not getting any guidance from their leader. They are on their own. I had just been thinking earlier today that I need to send out an e-mail. I need to get on the ball and raise some money and get it together.

And, instead. I trolled through Facebook for a good 30 minutes. Mind numbing. At 10 o’clock at night.  Awake by myself. And then I saw the post that changed my whole day. I had had a good day. Now I have had a great day. And so have you. Because…

As my Dad keeps telling me, “there are good, kind, caring people out there. You are finding them.”

Yes. I am. When I find them, I am always stunned and amazed. And then the tears come. But it is a good cry. Not a painful cry. Not a “what the Hell am I going to do” cry. Not a feel sorry for myself cry. Not a feel sorry for the kids cry. These are tears of pure amazement and joy.

I wanted to donate to them. And I have a team that I am trying to raise money for. But I don’t mind if they beat my team. It all goes in the same pot, and I kind of think I like the idea of 10 year old baseball players raising the most money for our walk. I don’t mind losing to a bunch of boys. May the best team win….

Click here to donate.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have No Comments

What comes our way, comes our way.

Brad pitching. Fall 2012.

Brad pitching. Fall 2012. Thank you Kim McCaffrey for this photo.

 

Last night Brad had a baseball game. But this wasn’t just any baseball game. This was the championship game. Brad’s team had beat this team earlier in the week and the boys were pretty confident they would be able to do the same. I was too.

At the end of the first inning, the score was 12-3. Them. I walked over to the dugout and gave Brad the drink I had for him. He told me, “We are gonna lose this game. There is no way.” I quickly told him I didn’t want to hear him talk like that, it was only the second inning and they could come back and win this game. (I am not sure I believed those words, but as a Mom, I had to say them.)

At the end of the 3rd inning it was 14-5, after one of their players hit a two run homer.  Our boys were looking pretty down. The parents were cheering and trying to get them psyched, but you could tell their self confidence was shot.

I know the feeling. There are so many times that I take an outsiders look at our situation and I think to myself : What the Hell am I going to do? I am going to lose the house and have to file bankruptcy and still not be able to take care of Jim AND the kids. Let alone me. How am I going to keep the kids on the right path through all of this? How am I going to make their childhood a good memory and not just a memory of Alzheimer’s and all that goes with that?

I talk to a lot of people in the Alzheimer’s world. Others that are care partners, doctors, friends of those that have a parent or spouse that are afflicted. I hear the same stories. I KNOW what is coming. Sometimes I think this makes this journey that much harder. I hear about the incontinence and the repeating of stories and questions. I hear the walking out of the house naked tales and about the yelling and arguing episodes. I have been told by many that I will not be able to afford his care and will probably lose everything.

When I tell you how I feel, please understand, I am telling you my journey, but there are MILLIONS out there that are walking this road with me.

Jim and I have always taken a lot of pride in always paying bills.We have really good credit and it has never been a problem getting credit of any kind. Not too long ago I had a long conversation with a woman whose husband also has Younger Onset Alzheimer’s and he is now in a facility. They have a young daughter Brad’s age. She told me how much money they used to have. (A lot more than Jim and I ever did). Then she proceeded to inform me that her house was now in foreclosure and she has barely kept her car from being repossessed. I told her I didn’t want to mess up my credit and that would really bother me. She quickly replied,”You won’t care. It won’t matter.” I couldn’t believe what I was hearing. How could I not care?

Flash forward just a few months. I am starting to not care. I am just able to focus on the here and now. Planning and worrying about our future past this year just isn’t viable. I know what is coming and unless I stumble upon some kind of miracle, she is right. It won’t matter.

Talk about depressing. Not only am I losing my best friend and living in a home that is emotionally void (sans the kids) while trying to keep up with everything, I also have that nagging in the back of my mind about losing our savings, losing our home and at the same time not being able to find $5,000 – $9,000 a month extra to pay for care for Jim (figures vary depending on what type of care and where he will be). Yep, that is enough to make this really strong, hard-headed woman just want to stay in bed. Or just give up. I am not a quitter, but I have to admit, there isn’t a lot to look forward to or  live for. Jim seems happier to be around than I am. I used to worry about saving each month for college for the kids. That now seems like just a cruel joke.

Back to the game. Last inning. They got the score up to 15-7. Then it was 15-10. 15-11. 15-12 with 1 out. 15-14! Then another hit and it was 15-15 and by the time the game finished it was 15-19, us. Our boys won the game!

As I sat and watched them getting more and more excited and I watched the other teams players look more and more defeated, I thought of our life. Our depressing life and what we have ahead of us. Or what I think we have ahead of us. Most days I don’t see anything to be excited, happy or joyous about. Then I realize that I have two fantastic kids that need me and I have a husband that needs me and parents that need me and friends that need me and a world that I have yet to see. I have a mission yet to be fulfilled. I have a purpose that goes along with the suffering and heartache we will yet endure. I am not looking forward to this journey. I am not excited or happy about becoming a spokesperson for this cause. But I will. I will and do the best I can. I will and make a difference to many. I will and it will help me too. It will help me keep putting one foot in front of the other. It will force me out of bed each day and give me a higher purpose. It will keep me smiling and finding a reason to live. I am in a game too; a game of big consequences if I don’t win. Winning means there will be a cure and a better way to fund care for Alzheimer’s patients. Winning will be changing the face of Alzheimer’s from someone who is old and “going to die soon anyway” to someone who is contributing to society and still has many more years to live. I need a team to help me win.

Brad's championship trophy!

Brad’s championship trophy!

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (2)

The glass IS half full.

Brad and Jim enjoying the ball game.

Brad and Jim enjoying the ball game.

I want to share a very quick story with you. This story perfectly illustrates how my two children not only teach me life lessons everyday, they help me become a better person.

Last night Jim, Brad and I went to see a local minor league baseball game. It had been raining and we weren’t even sure the game would get played. Luckily, it did. During the first couple of innings we sat in the drizzle of rain, Brad and I sharing an umbrella while Jim decided he was fine without anything other than his hat.

As most 9 year old boys do, Brad REALLY wanted a foul ball. We were sitting behind the netting behind homeplate and would not be getting a foul ball. Not too long after we sat down, the usher that had wiped the rain out of our seats came past us, walked over to the dug out and said something to the ball boy. The ball boy proceeded to hand over 2 baseballs. As the usher walked past, I asked him what the secret was. He smiled and said it helps to work there. He also mentioned he gives them to kids in his section. Wait. Aren’t WE in his section? I look around. There are literally 4 kids in his section. The rain has kept most at bay tonight.

So I told Brad to go over and ask for a ball. After much prodding over the course of an inning or two, he finally did. IMMEDIATELY, that same usher came down and told him he needed to return to his seat and that those bat boys were working and he was disturbing them. Well! Being the Mama Bear that I am, I was…..let’s say, a little unhappy. I didn’t say anything to Brad, but in my mind I was saying a few words.

By the 7th inning, it is apparent the home team isn’t going to win, but thankfully it isn’t raining and it is an enjoyable night to watch some ball. Also in the 7th inning, the very same usher comes down to Brad and asks him if he really wants a baseball. Brad says, “Yes sir.”  The usher prods him a little more. “Are you sure you do?” “Yes sir.”

From his tattered, red vest pocket he produces the elusive  baseball that lights up my son’s face. “Since you really want one. I like to give them to kids that really want a ball.”

I make sure Brad tells him “thank you.” Then I thank him myself and I let him know the little boy sitting behind us really would like a ball too. Sure enough, the usher walks over to the dugout, waits a moment and gets the other boy a ball too.

This is all confusing. Instead of switching my thoughts, I try to figure out his motives and why he had a huge change of heart. It was nice, but why?. I am learning just how cynical I am. Much to my dismay. First impressions are the hardest to change.

Fast forward to our 20 minute ride home. It is late and dark. I am lost in my own thoughts planning for the next day at work. Out of the blue Brad sets me straight.

“Mom!”

“Yes Brad.”

“I know why that man told me not to ask for a ball.”

“Oh really? Why?”

“He had planned all along to give me one. He just wanted to surprise me. He waited until almost the end of the game and then he wanted to make sure I got one from him. He knew he was going to give it to me when he told me not to ask for one. You noticed he didn’t tell anyone else that came over to leave the bat boys alone?”

“Yes, I had noticed that.” (and had sat steaming in my seat)

“He is a nice man. He wanted to give me the ball himself.”

So, I continue driving, letting his thoughts, his simple way of seeing the glass IS half full sink into my mind.

And again, I am ashamed. I am ashamed that I preach everyday to my children to be positive and to not judge others and to let things go. But I am guilty of not practicing what I preach.

Thank you Brad for teaching me.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (3)