No! You can’t.

Redskins game, Dec. 2012.

Redskins game, Dec. 2012.

If Alzheimer’s was contagious, there would be millions of people running around scared and demanding that a cure be found. There would be such a great demand for more answers and better care that change would happen. Quickly.

But it isn’t contagious, so we must fight for every single penny that is given towards finding a remedy.

I sometimes wonder if each of the people who would be diagnosed at some point in their life knew they would be the one out of every 3 seniors who would die from dementia would they quickly take up the cause?  What if their beloved children were more susceptible and more likely to inherit this death sentence? Would they stroke a check? Would they march in the streets? Would they scream and yell and curse and fight like their life depended on it?

October 2006. Brad was 2.

October 2006. Brad was 2.

What if you were told EACH of your children has a 50/50 chance of developing the first signs while you will be alive to witness their decline? And when you search the doctor for answers, begging with your tone, body language and questions for a way to keep the inevitable from happening, you are simply told there is nothing you can do. You can keep them from football, boxing and soccer. That is it.

So, you do the one thing the doctor has told you. You break your athletic sons’ heart and forbid him from participating in soccer, even though he really wants to. You forbid him the pleasure of holding a pigskin in his clutches and running for dear life towards the goal line . Even though he has told you time and time again how much he loves playing football and soccer, you hold steadfast, with your belief that this is the one only thing you can do at this stage of the game to possibly make a difference.

Brad having some fun in Dec. 2009.

Brad having some fun in Dec. 2009.

 

Two years ago we were able to attend a Washington Redskins game. They were playing the Baltimore Ravens so it was a big game. I had gotten tickets because Brad loves watching football. He was so excited to attend a NFL game. The fans. The chants. The chill in the air. It was a great family memory making event for us. During the game, Brad struck up a lively conversation with some gentlemen sitting behind him. One of them coached youth football in Maryland. He was impressed with the excitement and knowledge of the game Brad displayed. He asked him if he played.

“No.”

“Why not? I bet you would be good.”

“My Mom won’t let me.”

“Momma, you need to let this boy play some ball. Let him come up here and play for me. I will teach him how to play.”

Yes, this perfect stranger, meaning no harm, still stings my heart and soul with his innocent remarks. Even recently,  a father of a teammate on Brads’ baseball team, whose son also plays football, he told me I should let Brad play. He educated me on how well made the helmets are now and how safe it is. It took all of my self control to remain calm and collected when I really just wanted to ask him how he would feel if the only thing he had been told by the doctor to help stave off a disease that is killing his father would be to prevent him from participating in the very thing he was demanding I let my son do? How dare them. How dare they, albeit with no ill intent, call me out as a bad Mom for not letting Brad play a sport? How dare they tell me what I should do for my son? How do you fight a society that doesn’t listen? Doesn’t look too far down the road? If this disease afflicted children or even teens, would we not have our funds for research?

Brad playing soccer before Jim was diagnosed and I was told not to let him play. Sept. 2010.

Brad playing soccer before Jim was diagnosed and I was told not to let him play. Sept. 2010.

Let me be clear here; I LOVE football. I used to love playing it in the backyard with my brother and his friends and I loved watching it. Jim and I would sit each Sunday and watch game after game. (Before kids) But as his disease has progressed and news reports have surfaced linking the sport to dementia, I have lost the thrill. I now cannot see the excitement in a great tackle but I can only envision the damage being done. I can picture the brain rattling in the helmet and wonder if it is worth it. Then I will turn to look at Jim and see the dimness in his eyes and lack of expression on his face and I know it isn’t. It isn’t worth the pain and suffering for either the player or the people who love them.

I know what it feels like to love a game . When I think back to my days playing basketball, I can still feel the thrill of running up and down the court with my teammates. I can recall how exciting it was to hear the fans, make a play and to be part of the game. It is exhilarating. It is challenging. Being a member of the team is a feeling of security and family that you don’t get anywhere else. Whether it be basketball, football, baseball, or soccer, being part of the squad is a great privilege and teaches life lessons on teamwork and hard work. Who am I to deny my precious son this opportunity? Yes, he gets to play baseball and basketball. We all know, though, that the thing you want the most is the thing you can’t have. So, while he is a great joy to watch on the diamond and the court, he longs to run the gridiron and the field.

I will stay strong in my steadfast denial of his joy, but it will continue to break my spirit one comment at a time.

Brad at the Duke/Carolina football game, Nov. 2013

Brad at the Duke/Carolina football game, Nov. 2013

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (4)

Do I have to YELL?

Bradley's 2nd Birthday.  I love this picture of us.

Bradley’s 2nd Birthday. I love this picture of us.

Today was our son Brad’s 9th birthday. It is AMAZING how children change your life.  You go through this world concerned about tons of things.  Most of them revolve around you. I believe it is called self-centeredness.  Then you have this little, breathing creature that you are responsible for.  This beautiful, warm, fragile being that looks at you with the most loving eyes that say “thank you for having me” as you hold them in your arms.

Brad loves sports.  He loves being outside.  He loves being active and has a great sense of humor.  He makes me proud, frustrated, entertained and worried all in the same beat.

I have asked every neurologist that might have an answer the same question: “What can we do now to help prevent the kids from getting Alzheimer’s when they are older?”

Since it seems to run in Jim’s family, this is a huge concern.  Wait, it is more than a huge concern.  It is with me every waking moment of my life. Sometimes, the thought of the 50/50 odds my two children have takes every ounce of breath out of my lungs. With two kids having  50/50 odds, my odds of missing that bandwagon are very, very slim. It is one of the driving forces behind my desire to start this blog, raise awareness and raise money for research.

Back to how we can prevent this or maybe lessen the odds; no boxing, no football, no soccer and no hitting their heads.  What does Brad want to play?  Football and soccer. But that is another blog post. As luck (which I seem to have used up when I married Jim) would have it, Brad finds a way to hit his head EVERY week.  Without fail.  At school, at a friends’ home, playing in the yard, playing in his room, it doesn’t matter.  Stitches, bruises, scratches, bumps and lumps. We’ve seen them all. Each time it is as if I have hit my own head but a hundred times worse.

Tonight, he was jumping around the living room excited about his birthday. He jumped onto the couch and wacked his head on the arm of the couch.  Ice on it.  Bump coming up.  Tears on my sleeve. Worry in my heart.

Last week, when he somehow managed to almost give himself a concussion on my knee, I snapped.  As his tears were welling, I was yelling.  “Brad, STOP hitting your head!!!  Please! STOP HITTING YOUR HEAD!!” What mother in her right mind yells at her child for hitting his head when he is obviously in pain and hurting?  First, I don’t think I am in my right mind.  Second, a mother that is aiming to protect her child from something that may or may not be in the stars. Yet there is a feeling of a meteor that is constantly orbiting around our universe. Will it fall and hit us?

Brad's 3rd Birthday.

Brad’s 3rd Birthday.

When Brad was in first grade, there were two poles in the middle of his classroom.  Sure enough, he hit one, not once, but twice. Each time he ended up with a huge bump.  It was so frustrating knowing I need to keep him from hitting his head, speaking with the school to remedy two large metal poles in the middle of his classroom; but not seeing any action until months later when another parent complained and came up with a solution. At the time, I wasn’t ready to speak out loud that the more he hits his head, the greater his chances are of….  OF…

I still knot up trying to put it all into a sentence.

I remember not only the frustration, but the insane desire to just yell.  Yell that his father has Alzheimer’s Disease and my beautiful baby boy that is so smart and so fun and full of life might one day follow in his father’s footsteps and they needed to fix the damn poles!

Why shouldn’t the school immediately put foam around poles in a first grade classroom without me having to explain to them “our situation” ? It isn’t just the school dealing with the poles.  It is society in general expecting passivity, while I feel the tremendous pull of a mother’s love guiding me in a completely different direction. The path of standing up and being heard and making people listen and understand.

When I still let him play soccer....

When I still let him play soccer….

In the meantime,  he is out on the playground, smashing into another kid and going to get stitches.

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