Saturday, September 27, 2008

Sacrifice and the Things I Thought I Knew

Last night I was sitting on our large front porch thinking about sacrifice and how it relates to PD and our situation. I always go back and forth on this one. Some people, I know, feel I am sacrificing a lot to be the wife of a PWP. Do I feel that way? Well, yes and no. Last night while sitting on the porch I was specifically thinking about the porch itself, and how much I love it. I love that huge, covered, wrap-around porch. I love the house attached to the porch, and I really love the view from the porch. It is a fact that one day we will have to give it all up. Financially there is no way for us to pay off the house and build an addition. We need a larger house, but we also need a paid-for house. Not going to happen here. While there are several other options available to us, we know with certainty that the first house we purchased together, the house our daughter was born in, we will have to give up. Our house has fallen victim to PD.

Sacrifice. We will sacrifice our house, our home, to ease the financial burden of the future. I will be sad to leave the home I so dearly love, but as always, I will be okay. We will be okay. But it's just a house. I can make any house a home for us. What about all the other sacrifices made in the name of PD? Can I list them all, one by one? And if so, would it be a wise thing to do? Would it embitter me and make me angry? Would it make me sad and depressed? I don't think so . . . .

See, here's the thing about sacrifice - it's not always about what you've lost. I have found that sacrifice is much more about what you gain. In Mitch Albom's book The Five People You Meet In Heaven, the character named Captain says this of sacrifice -

" . . . Sacrifice is a part of life. It's supposed to be. It's not something to regret. It's something to aspire to. Little sacrifices. Big sacrifices. A mother works so her son can go to school. A daughter moves home to take care of her sick father. . . . That's the thing. Sometimes when you sacrifice something precious, you're not really losing it. You're just passing it on to someone else."

So listing all the sacrifices I have personally made for PD wouldn't necessarily be a bad thing. Certainly not if they are supposed to happen, as a normal part of life. But there is a big problem in listing all my sacrifices. I don't really feel as if I am sacrificing anything, except for my home. So many people have pointed them all out to me -
I am sacrificing my youth.
I am sacrificing the large family I have always wanted to have.
I am sacrificing my financial security and my retirement.
I am sacrificing my children having a young and healthy father.
I am sacrificing my emotional and spiritual well being.
I am sacrificing my home.
Over and over again I hear it all, from family and friends with the best of intentions, to nosy strangers in the checkout line at Walmart. Everyone is wrought with sorrow and regret and an opinion about what I am sacrificing in my marriage to a middle aged man with PD.
But what about my choices? Where does choice and decision come into play? I agree that technically I may be sacrificing all of the above, but if sacrifice is a part of life and something to aspire to, and if I willingly made these choices and decided to live this life, then all these sacrifices have become noble rather than regretful.

I knew from day one there was a very high probability of Keith being diagnosed with PD. I saw the tremors on our first date. The writing was on the wall, so to speak. I decided to enter into a relationship with a man that in all likelihood, would be diagnosed with PD. I decided to marry that same man, and have his children. All the things that go along with loving and being married to a PWP have been choices and decisions I have made, WE have made, together. It really takes the edge off sacrifice when it becomes a choice.

It's all the things I didn't know that ring true of sacrifice now. For instance, I knew that one day our daughter would be too heavy for Keith to pick up and hold. What I didn't know was how disappointing it would be when that day came much sooner than expected. I knew that when my son recently bought his first guitar he would want Keith to show him how to play and that Keith would have a difficult time doing so. What I didn't know was how my heart would leap into my throat with pride at my son's loving, thoughtful and understanding reaction to Keith's inability to play guitar with him. I knew that the symptoms of PD include facial masking and apathy. What I didn't know was how difficult it would be to no longer read my husband's emotions and thoughts in his face. I knew that stress and excitement would cause Keith's tremors to become more pronounced. What I didn't know was that simply telling a story about a stressful event that took place more than five years ago could still cause his tremors to worsen. I didn't know how angry I would become at total strangers getting impatient with Keith for walking slowly in front of them at the grocery store. I didn't know that feeling Keith's tremors in the middle of the night would be gut wrenching and deeply comforting all at the same time. I didn't know that I would hate his hobby for robbing me of time with him, but still be grateful to it for keeping him happy and motivated. I didn't know that I would be so willing to sacrifice nearly every single thing I have to keep Keith healthy. I didn't know it would become so important to me to have children with this man for reasons no one else seems to understand. I didn't know I would get so little support and understanding from those closest to me. I didn't know that an elderly PWP sitting in a wheelchair could teach me so much without ever saying a word. I didn't know how much I would enjoy attending a PD support group. I didn't know I could love someone other than my children so completely and unconditionally. I didn't know that my biggest fears and greatest dreams could coincide and happen all at the same time. I didn't know that I would be given so much more than I ever hoped for.

What is sacrifice without the choice and decision that precedes it? I made the choice to live this life, sacrifices and all. Yes, there were many, many things I did not know would materialize when I made that choice. Perhaps you could call that sacrifice. On paper, or this blog, maybe it doesn't always look so good. Hell, some people could get depressed just by reading this post. But regardless of how it all looks, regardless of all the sacrifices being made, in my heart I truly feel as if I have it all. These are not sacrifices made because of PD. They are decisions made in the name of love. I have a good man who loves me dearly and adores our children, who would move heaven and earth to make us happy. I have great kids who make me proud everyday. I have a nice home in a nice neighborhood. I have the proverbial life - the little house with the white picket fence. I have a wonderful life of which no sacrifice is too great. That I do know.

Wednesday, September 17, 2008

So Here's Where We Are -

Activism is very important to me, especially when it comes to PD. And quite frankly, even with all the celebrity buzz surrounding Michael J. Fox and Muhammad Ali, there just isn't enough out there. Most of the information I've gathered over the past few years is the same stuff written over and over again. And what about the kids of the YO patients? There is less for them. Yeah, there are a few books (Ali's daughter, Rasheda Ali, actually has a wonderful book for kids titled I'll Hold Your Hand So You Won't Fall) but not enough. Most of them deal with grandparents, not mom and dad. And forget it if your kid has and aunt or uncle with YOPD! So that has been one of my many projects I've been working on this year. I've been writing a series of children's books dealing with the issue. There is one for each - mommy, daddy, aunt and uncle. I have not been able to work on it everyday because I've been sooooo busy with everything else, but I should have the entire series finished by the end of the year. WooHoo!!!!

Another project I've thrown myself into full throttle is planning and organizing a formal charity Christmas ball for 2009. It's just in the very beginning stages right now, and by that I mean I am currently getting all my ducks in a row and networking, getting together all the people who are willing to help pull this off and tell me just exactly what in the hell I'm doing!!!! A very nice lady named Melissa, who runs the new YOPD group Keith recently started attending, has experience with this sort of thing, so she will actually be my partner is this new venture, and together we will throw a party of the likes this town has never seen! Okay, so maybe it won't be quite that big, but it does look promising. Black tie, catered, lots of press coverage, all proceeds donated to the APDA. It will be a ton of work, but the result will be well worth it!

This Sunday we are all going to the annual "Young At Heart" Parkinson's Support Group Picnic. Keith and I will wear our matching Shaky/I'm With Shaky shirts, and because we are trying to generate as much buzz as possible about the Store, I've invited the local news to come and do a story. We'll see if they actually show up. Wish us luck on that!

I recently had one of the producers of a popular PD documentary show some interest in filming our family. Let's face it - we've got a lot going on! And with Project Baby (thanks for that term, Michelle!!) underway, we are looking forward to lots of exciting changes. It will be very fascinating to see how all of this will affect Keith and the disease, and in turn, it will be just as fascinating to see how Parkinson's affects us and what we have planned. But, I have not heard back from her in weeks, so I guess she wasn't all that interested. I'm thinking about doing it myself. There are some small production companies in the area that could do all the editing and whatnots, but I think Keith and I could do all the filming. Heck, our video camera stays loaded and ready to go anyway. So that will be a learning experience in its own right!

Well, gotta run - you know - in the name of Project Baby . . . . (wink!)

Tuesday, September 9, 2008

Don't Forget to Shop!

Just a quick heads up -

The holiday season is fast approaching, so don't forget to stock up on all your PD advocacy wear! I will be adding more fall and winter apparrel this week, as well as updating the site a bit.


Long Time No Blog!

It's been too long! How I have missed blogging!!
Between getting Hailey ready for middle school this year, a teething toddler, a very sick little Pierre, a wedding and trying to paint and redecorate Hailey's room, I haven't had time to do much blogging. But almost everything has finally settle down some and I've caught up on most of my housework. Hailey's room should be finished by the end of the week.

Hoping to blog more this week! I have a ton of stuff to write about, so check back soon!!!!!