A month or two ago, I was contacted by the Alzheimer's Association of Middle Tennessee, asking if they could send out my info and see if there were any takers interested in my story. Of course I said yes. Then when Fox News wanted to interview me for a special they are doing on High School Sports, Head Injuries and long term results, such as Early Onset Alzheimer's or Dementia, of course I said yes again. The day of the interview, my 13 year old asked if I was nervous. "Nope" I said. He wondered why not. And I explained to him that I felt that it was my duty to share my story, to try and help others. To make sure fewer people suffer as I have due to 2 decades of concussions. And at the moment I honestly felt that way. So why now, 1 hour away from airtime do I feel as if I am going to barf? Why do I feel like I want to scream "Just Kidding!!!" at the top of my lungs?
I know the importance of my story. I know people associated with Alzheimer's Association have heard me talk on myself 3 years running. But there really isn't a limit as to who will know my story now. If it airs, if it is placed on the web in their archives, there is no hiding it. There is no pretending what my future looks like. No, I don't want to hear, "I'm sure you will be okay", "The doctors may be wrong", or anything of that nature. You are only kidding yourself. I have a 2% chance of NOT getting Early Onset Alzheimer's in the next 2-12 years. Do you realize that means that I will more likely win the lottery or something crazy like that, than have my memory when I am 50 years old? Don't get me wrong, I am not angry at the disease, but I really don't enjoy people who minimize what the disease means to me and my family.
Maybe that is what I am afraid of, people seeing the special and telling me that "I'll be okay". In one way, they are right, I will be okay. As the old joke goes, Alzheimer's is the way you want to die, because you don't even remember you are sick. But I have done the research, I have read all there is to read. And I know that it is a horrible disease for my care giver(s). And that is the part that hurts me. Knowing how much trouble I will be for my family, that hurts me. Knowing how tight the budget already is, and how much tighter it will be, that hurts me. Knowing that I am sick, that doesn't hurt.
When I was pregnant my mother in law condemned me for getting pregnant while knowing that I may not make it and that I would leave her son alone as a father. I get where she is coming from, but what she missed is how crucial our sweet baby boy is to our family as a whole. There is no such thing as half-brother, step-sister, step-brother in our house. We are just one big family and we love and support each other as such. And if I become a burden, and my daughters think of walking away because I am only their step mom, I believe they will look at their little brother and get back in there to help in anyway they can. That is the bridge that my sweet baby boy has created. On the outside it may look as if I was selfish to have a baby while I have such a sad prognosis, but in reality, I think I have given my whole family the greatest blessing ever.
I will pass away pretty young, by typical standards. My husband and I have discussed that, and he knows that I expect him to remarry and enjoy the last 30 or so years of his life with someone else wonderful. But when it comes to keeping the kids together, that will be Andrew's role, and that is why I had a baby.
Recently I had what I call, a little talk with God. I did that a lot while I was on bed rest, but since then, most talks with God end up with me asleep! No offense to God, but mothers of newborns will pretty much sleep anywhere you let them! (or at least I will) Anyway, we had a little heart to heart, and I asked him if I was blowing this whole thing out of proportion, as I tend to do... But unfortunately this time he said no. He let me know it was time to follow through with all of the hints he has been dropping. It was time to focus on the book I started "All the things I want you to know, when I can't remember". It was time to get long-term care insurance in place. It is critical that my husband learn to carry the spiritual burden that has long since been mine. And it was time to tell my husband that his dreams of me being a big executive and making lots of money are over. It was time for me to enjoy each and every second with my children, my family and my husband. So that is what I have begun to do.
Lately I have heard "You sure do take a lot of vacations!" And I smile and say, "thank goodness for all of my husbands frequent flier
Now talk about airing my dirty laundry, that is it. I am not as smart as I used to be, but I am much more loving than I used to be! There are definitely pros and cons to every scenario, and I am looking for all of the pros there are! I am about as strong as a person can be. But I'm not blind to my situation. For that reason, I told my story to our Fox News affiliate. For that reason, I will continue to help the cause in anyway I can!