
Monday, March 19, 2007
When I Am Sorry

I Saw Jesus (Author Unknown)
I Saw Jesus I saw Jesus this week. He was wearing blue jeans and an old shirt. He was up at the church building, He was alone and working hard. For just a minute he looked a little like one of our church members, but it was Jesus, I could tell by his smile.Wednesday, March 14, 2007
The Cliff and the Choice
The Cliff and the ChoiceFrom the Summer 1999 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.
This poem was submitted by Julie Sando, a woman who recently went in for HD testing. Her words VIVIDLY describe the "testing process" and some feelings one might have! The Illinois Chapter has received permission to reprint this poem.
Walking a path there are no signs, no direction, I am alone. I walked through crowds and still the sense that I am somewhere else and cannot fit in like I used to overwhelms me.
I come to a fork in the road. To the left is the unknown road called "What If", to the right the sign says "Test Ahead." At the end of each road is a cliff.
I walk to the edge of each one. To the one at the left I ask myself, "What if I test? What if I don't? What is best? What is worse? What if I have it? What if I don't? What are my choices? What are the risks, being at risk?To the one on the right I ask myself, "What will I find? What will I do? Positive, negative or the unknown in between. Will I step off the edge and fall from the cliff? or will I take off and soar to the heights?
I walk back and forth at the fork in the road turning back so often I have worn a path of its own. Sometimes I think I know and I take off in one way only to stop in my tracks my resolve in pieces on the ground and my soul weary from the journey.
There are even days when I almost forget and I do not go to the fork in the road. I am alive for now and I am going to live today for all it's worth. I am going to tell someone I love them, I am going to cherish this family, this day, this job, this house, these friends, the things I have taken for granted. I sort out what matters and I smell the roses along the way. I feel I have aged and at times I feel like a child -- vulnerable.
One day I take off at the fork in the road. Only I do not stop I go to the right and the test I take... realizing that the test began long before this time and place only I did not know it. I begin to walk toward the cliff wondering what lies ahead.
It is just me and the Lord and I am trusting completely in Him. I cannot look back and I cannot stop I am compelled to go on, it is my time. As I get to the edge I can barely move my feet, my heart is racing, I know I am going to step off.
I hear the words I did not know I would hear. Negative! Negative! Was I meant to soar? As I run off the edge I am hitting a wall, I fall smack dab down on the edge and land with a thump. I do not understand why I cannot fly? I meet shock, then grief comes to visit, I am thankful, I am happy but I am crying.
I am feeling so much emotion that I have buried down deep. Emotions for my mother who is in mid to late stages of HD. Emotions about this whole journey and process that I have not allowed myself to feel. They come floating up calling my name. Time to take attendance no more tardies they say. You can't put us off. I am so confused. What is this I am feeling?
Others say you can now be the person you wanted to be. I will never be the person I was and I don't even want to be. I like me better now. I was more the me I was meant to be in this journey than I ever was before. I lived in it, I did not wait for some result to dictate my life. I will continue to change because I am a part of HD. My family, my mom, my sib's who are still on their own walk through the fork in the road. My friends in the HD community, Positive, Negative, At risk, Caregivers, loved ones and friends of those impacted by HD. We are family. I will always be a part and I will always live now, and I will grow and I will love and receive. And I will give back.
Slowly I get up and step off the cliff and I see something I never saw before until now. I was never alone, the Lord was and is with me. And with those who tested positive, and at risk and with the caregivers. He never left one. And all my curiosity of whether or not I woul
d fall off the cliff or soar from the heights was also answered. WE ALL GET TO SOAR. No one falls down...we soar closer to heaven and we taste it. And we are changed.*****Author's Notes*****
I recently tested negative for HD after being at risk for a number of years. My mother has tested positive in mid-late stages. I have siblings who have not tested. I would never tell someone whether they should test or not test. It is a personal choice.
HD has affected me profoundly. I have made some very special friends in this community and I am so much richer for it. We are family and I am deeply indebted to them for not just being there before but during and after this testing process. I will always have it in my life, in my family for now. I care passionately about this disease and am going to pray and fight for a cure. We all can do the same, "One Voice At a Time."
Update: I am working on a book of sorts called "Even If". It is about my life of which Huntington's Disease is a part. In fact, the knowledge of HD kicked this whole book off. I hope it touches someone right where they are at.
A Dog Named Katie
I wrote this back in 1999. Since it has been used at other sites I thought I might as well include it in my own.Mom always named our pets people names. I hated that. We hat a cat named Snoopy once. But that was it. All the other animals had to suffer. A cat named Ethel was first. I guess that was okay because mom named it after her mom. And you don't name a family pet after someone you don't like right?
Then came our dog Patrick. He was with us for such a long time. Then about six years ago mom got Katie. I remember when she was trying to decide what to name her. Though I was grown and with a family of my own I truly felt I had to steer my mom away from another people named animal. Why not something like Itchy or Sunny or Boston or something creative? But not Katie.
Well, shortly after this point in time mom moved back down to Southern California with Katie in tow. For six years actually I think it is closer to 7, Katie has led a sedate life sharing a home in Laguna Hills Retirement Community with Mom, Grandma and grandma's little miniature poodle Alfie. Now Alfie is cool. He looks more like a tiny, tiny black sheep than a dog and he is a real instigator of both fun and trouble. I guess he is kind of like me. Except don't tell me I look like a sheep.
As the story goes Mom becomes very ill and no longer can live with grandma. We her kids need to find her a new home where she can get the kind of help she needs. That means no dog's. No Katie. Katie was all mom had each day. Her own little baby. A fuzzy female Shizu (I am sure I am spelling it wrong and if I spelled it like I think it sounds it would come out more like a bad word). Though I love mom, I do not, did not, would not take the dog. In fact we have had such a bad time with dogs (we used to do cats just fine until our son was found to be highly allergic to them. Now we just have a long beloved outside cat named Buzzy - notice it is not a people name?) Anyway my husband and I had a rule about the next person to bring a dog home unannounced. Shoot on site. Not the dog but the person who brought the dog home, meaning Steve or I. This was a hard and fast rule. Okay so we wouldn't really shoot the person but we wanted to emphasize how strongly we were not going to do this again.
As I write this today there sitting on the floor across the room is a pile of fur. Yes, fir. Not a stuffed animal, not a cat, not a rabbit but A DOG and not just any dog but a dog named KATIE. Seems the people who were going to take her had a change of heart. So poor Katie has been shipped on an airplane to an unfamiliar place and given two homes in about two weeks. I get a call last Thursday begging me to take Katie. Or she would be shipped to a pound. Eeeek. I can't do that. But I don't want a dog.
My brother already has two dogs. He is gone all day at work. So because this isn't just any dog but my mom's dog I feel compelled out of some sense of family obligation to take Katie in. She is beautiful, doesn't error on the carpet, is a lazy lying around dog who loves to be loved. She only has one bad habit. She barks when someone knocks on the door. That's it. And usually it is when I am least expecting it and whatever is in my hand seems to shoot straight out as soon as the shriek fills the room.
At first I thought about changing her name. Maybe calling her "T." Short for Katie. I thought it would be okay. But then I figured it wasn't her fault she had a people name and I probably shouldn't make life any more traumatic. She is a good dog I must confess. How did I get into this mess? Why does having this dog bother me so much? She is great. Then why?
Because, she reminds me of something very unhappy for me. She reminds me of my mom. She reminds me each time I look at her whose she is. Who raised and loved her. Who petted her and took her everywhere. I begin to realize that this dog, this fuzzy little cute thing had more of a relationship with my mom than I did. In seven years she beat my 37. She was close to my mom. They shared a closeness I never had and will never have. She also reminds me that mom is no longer able to take care of herself.
That Katie is here because mom can no longer take care of her. And mom is no longer able to take care of me. She cannot go places with me. She can't offer me advice when I need someone to talk to. She cannot teach me how to sew. She can't baby-sit her grand kids or come to their Birthdays or things at school. She cannot be the parent. She is becoming the child. And if I didn't realize already that I am grown up, I feel it profoundly now. I also feel the little girl in me calling out once more for my mom. Only, she isn't there. I didn't get mom. I got her dog.
Maybe instead of being a sad reminder to me this dog will be a good one. Maybe in time she will remind me that like mom she is innocent of what has happened to her. That she didn't ask for this lot in life. Mom did not ask for Huntington's Disease and neither did Katie ask to be moved. She loved my mom. Maybe this is a way I can honor my mother. By taking care of what is precious to her. You see my siblings can't do it. They are at risk and the pain of what this dog represents is too much to look at. That's how it is sometimes isn't it? We want to push aside what is uncomfortable and causes pain. We don't think about the person we ignore or push aside because all we can think about is our own pain.
Maybe this is my duty since I tested negative and do not have this disease. Maybe I owe this to her. I would like to think that just maybe I am mature enough to do this not because of some sort of obligation but merely because I love my mom and want to give to her in ways that will mean something. She doesn't seem to want or need my gifts of "things" but she would love it that I have her dog.
Maybe Katie is already teaching me how to really give and love. How to accept just as I desire acceptance. Maybe the one who got the best of my mom was her dog. But instead of running away maybe I can face this and thank God that I even have a chance to find a way to be close to her (my mom) in a way that speaks her language. Because in the end that is all that matters. It isn't loving like we want to be loved, but loving in the way that speaks love to the other person while still respecting our own boundaries.
You never know what life will bring. Sometimes it's a dog, even one with a people name.
(Update: Katie continues to thrive and do well as Queen of the Castle at my Uncle's home)
Tuesday, March 13, 2007
Even If

"Even If" is a story long in the making. If you read this blog I might as well tell you now that it will take time to both write it and read it. In the end I hope that "Even If" becomes part of your story and your life.
It began with a phone call. It was the fall of 1995. I was at home with two toddlers trying to run a home and keep them entertained while their father was at work. I can still remember it like it was just yesterday. Looking back I don't recall who was on the other end of the phone just what was said. My mother was diagnosed with Huntington's Disease. There was no more information just a diagnosis. I remember thinking that if I had never heard of it, it couldn't be that bad.The next day with my boys in tow we went to the public library.
I asked for anything and everything they had on Huntington's Disease. At that time, there wasn't much. I pulled out some big Medical Book and leafed through until I found the name. In order to make this easier to write I will refer to Huntington's Disease as HD. In this book was a fairly short and jarring description. What I read next had me running to the ladies room physically sick. In that moment I learned that Huntington's Disease is incurable, it is fatal and it is genetic.I learned that my mother would die, that we her adult children each had a 50/50% chance of having it passed on genetically from her and that any of our children were also at 50/50% risk as well. Between my siblings and I that immediately put the four of us and four children between us at risk. The good news if there was to be any would be that if one or all of us did not inherit the gene for HD that it meant our children were not at risk as it does not skip a generation. The bad news aside from the obvious was that it would take getting tested to find out. Easy enough right? Wrong? There was so much to consider.

Immediately I felt different. I walked into the library feeling a part of the world as a whole. Suddenly, I felt as though I were in a bubble so-to-speak, that was not of my making. I felt alone in this new found knowledge. It was so frightening. How do you function with this kind of news? How do you keep it together?
One of the very first, if not the first person I met was a kind woman named Jean Miller. Jean listened to my concerns, helped to answer questions and guide me to more places that would serve to be a support and literally become a lifeline to me over the next years.

I met others,Laney, Marcia (Lynn), Pat, Lou, Jerry, Red, and so many others. We became a family. Each of us in different roles. Some at risk, some caregivers and others who tested positive. We helped each other understand a different perspective.
A Humble Thank You

Monday, March 12, 2007
Friday, March 09, 2007
Goodbye For Now by Kathy Troccoli

I can't believe that you're really gone now, seems like it's all just a dream
how can it be that the world would go on, when something has died within me
Leaves will turn, my heart will burn with colors of you
snow will fall, but I'll recall your warmth
summer wind, breathing in your memory I'll miss you
But there will be a time when I'll see your face
and I'll hear your voice and there we will laugh again
And there will come a day when I'll hold you close
no more tears to cry 'cause we'll have forever
but I'll say goodbye for now
I can't imagine my life without you,
you held a place all your own
just knowing you were beneath the same sky
Oh what a joy I have known on rainy days,
in many ways, you'll water my heart on starry nights
I'll glimpse the light of your smile
never far from my heart
You'll stay with me
So I'll wait...for now
Life Comes Back II
This little girl can finally embrace the rain. She can laugh in the midst of it.
That has been my journey. I too am that little girl!
Thursday, March 08, 2007
Why?

It is a familiar question! Why? Why me? Why not me? When tragedy strikes we are often left searching for answers, for a reason, a solution, an acceptable understanding. Sometimes it is hard to accept that there are times when there is no answer forthcoming.
Sometimes we blame others, ourselves or God. If God loved us He wouldn't allow this thing to have happened? You know I have had a lot of things happen that I still don't understand but one thing is clear for me. God did not cause those things. God can get me through them but He did not cause them.
I think for me it comes down to not so much the why anymore as to the what. What will I do with what is before me? What will I do when I don't know why? What will I do when it makes no sense? Will I give up, crawl in my bed and pull the covers over my head and stop living? Will I drown my sorrows in alcohol? Will I pretend they don't exist and deny my own feelings even to myself?
Sometimes the hardest thing is walking through the tough stuff. Feeling it, facing it and continuing on. I know, I have been there. I still have my whys but I am okay. For now it's enough!
Wednesday, March 07, 2007
The Burning House

You don't understand I cry. I know those people, I was in that fire. I smelled the smoke, I felt the burn. I was there. I want to get them out but I can't. So I don't dance. I don't sing and I don't forget. With just a word it all comes back and I am there.Tuesday, February 27, 2007
The Pebble


A man was given a task by his master. He was handed a pebble and told to carry it to the top of a hill. The man went on his way when he was stopped by a friend who asked what he was doing. The man replied, "I am carrying this pebble to the top of the hill." The friend told him that he too had a pebble and since he was already heading up the hill would it be okay if he carried his pebble for him. The man agreed and on he went now carrying two pebbles. Soon an elderly woman stopped him and claiming to be weak and tired asked if he would also carry her pebble.
Before long he could no longer walk up the hill with ease. Each step became a struggle as he carried the pebbles of so many others. Stuck part way up the hill his master said, "what is wrong?" to which the man replied, I can't walk any further for I am carrying too many pebbles that are weighing me down. His master then asked, "Who told you to carry those pebbles? Did I not give you only one to carry? Why then are carrying these others? Those pebbles are not for you to carry or I would have given them to you. They are for those to whom I gave them.
And so it is with us. God gives us a pebble and somehow we end up with a burden that is more than we could or are intended to bear. We mistake our efforts for love or kindness never realizing that it isn't our load to carry. In the bible the prodigal son leaves his father and takes his inheritance to go and spend it as he likes. The father in this story does not chase after nor stop his son. He lets him go. The son learns that he must hit bottom before he can truly learn.
Did not that father care? Of course, he let him go but he waited and he waited for him to return. Eventually his son did return and he had learned his lesson. When you or I carry anothers load we may be keeping them from the lessons that God has for them. Not only that but we are keeping ourselves from that which God has for us. We labor under burdens that were never ours to carry.

Whose pebbles are you carrying today? What pebbles do you need to let go of?
For me I knew that the pebble I was carrying was the worry and responsibility of a 40 something year old sister of mine who has never been able to sustain herself on her own. When it is your family it is very difficult. Where is the fine line between helping and hindering? When is enough - enough? What priority does my own marriage, children and personal well being fit in to all of this? How do I let go? It makes you think!
Thursday, February 08, 2007
Some of the photo's I have taken in 2006

Beverly Hills, California in July of 2006

The Space Needle in Seattle, Washington in August of 2006

I went to a nursery and practiced

Snoqualmie Falls, Washington in August of 2006

Veteran's Day of 2006

Another picture I took at a nursery in 2006
This is Heaven on Earth ~ Maui!
I love this photograph! An incredible beach in Maui all set for a romantic dinner for two! What makes it all come together is sharing it with someone you love. For me, that would be my husband! He is the love of my life! And he doesn't wait until Maui to do these kinds of things! I am blessed!
An Introduction of Sorts
Some of the topics I will write about are:
Growing up
Faith
Friendship
Huntington's Disease
My Mom (s)
My Family
My Great Joys
My Loves
Photographs
Whatever flows!
It is a place for some serious reflection!
Perhaps a place for a good conversation!
Let's just grab that coffee and talk!
Tuesday, January 23, 2007
Jvabean's Blog

Welcome to my blog! My online moniker is Jvabean. I don't think you will have any questions as to why. Good coffee and great conversation seem to go together. Here is a cup of Jva for you!


