Cup of Java

Through My Lens

2009-01-01T19:30:00.000-08:00

The Family - It Doesn't Get Any Better Than This!

2009-01-01T19:28:00.000-08:00

Tuscan Door - I took this in Italy this past May 08

2008-07-01T10:49:00.000-07:00

This Day - A Reminder!

2008-07-01T10:40:00.000-07:00

Performed by Point of Grace
Words & music by Lowell Alexander

This day is fragile - soon it will end
And once it has vanished, it will not come again
So let us love with a love pure and strong
Before this day is gone
This day is fleeting when it slips away
Not all our money can buy back this day
So let us pray that we might be a friend
Before this day is gone
This day is fleeting when it slips away
Not all our money can buy back this day
So let us pray that we might be a friend
Before this day is spent
This day were given is golden
Let us show love
This day is ours for one moment
Let us sow love
This day is frail - it will pass by
So before its too late to recapture the time
Let us share love, let us share God
Before this day is gone
Before this day is gone

I want to talk about it!

2008-03-29T18:07:00.000-07:00

It was Christmas! I was talking to my mother-in-law telling her that I did not know why the Lord let my mom linger. Diagnosed with Huntington's Disease in 1995 it was almost 11 years later. Mom could not eat, talk, dress herself, go to the bathroom, walk, change herself. It was all done for her. What kind of existence was this? Why did she linger? Over the last couple of years she had pulled her feeding tube out twice but it had been a few years. We talked to her about it. Did she understand? The hospital kept putting the tube back in without calling us. Why call us? We had requested the tube in the first place. But that was back when she could eat herself. When she could talk. Mom would not talk about what she wanted when it came to end of life decisions. I will be okay. I won't die. Or at times, "I don't have HD." Denial Denial Denial. I hate denial. But to the dying perhaps denial is a form of living. It is not acceptance. Mom would never make end of life choices affecting her care or her wishes. WE WOULD!

So a hospice worker tells my sister that you cannot get the tube taken out without a court order but if she pulls it out again you can elect to not have it put back in.

Mom I don't want you to die. I don't want you to suffer either. If you think this is too much for you, you can pull this tube again and we won't put it back. I told her that once when it was just her and I. She seemed to respond as though it got her agitated. I felt bad. She could not tell me what she thought. I did not want her to go but I did not want her to suffer. I wanted her to make her own choice. Dam it, I didn't want to make it for her.

The day after Christmas mom pulled it out. My sister called. It happened. What will we do? We decided not to put it back in. The nursing home didn't get it. Why would we do that? Why wouldn't we? They got money for taking care of someone who basically laid in bed day after day. It was easy care for them. My sister who went and visited frequently with no response saw that her quality of life was next to nil. Would I want to live like that?

So we did not have them put it back in. Now we knew mom would die. I got on a plane. I knew I was going to see my mom die. We weren't close. I tried and tried but it wasn't to be. I don't know if it was the disease before we knew what it was or just who my mom was but I could not get close to her. She lived in her own reality and I could not find my way in. She used to tell me lies. Your family sees you as the black sheep because you won't drive 1500 miles with a newborn in your lap to visit family. Never mind that it isn't safe or that money might be an issue.

It was all lies. She was making it all up but at the time I believed it. I thought she might be manic and was calling medical facilities asking questions as to the diagnosis of her behavior. We all were. So then she is diagnosed. It is Huntington's Disease. There is no cure. She will die and you her children each have a 50/50% chance of inheriting the same thing. Talk about a shock.

Once she became ill and we knew why and what was causing this it was like there was an excuse for her behavior. It was awful but somehow explained away her mean remarks. I wanted to blame the disease. I did not want to think that she was capable of being this kind of person on her own.

I was able to love her through her illness. I could be there like I couldn't before. In sickness she would let me. I changed my own mothers diaper and I thought why not. she changed mine when I was a baby.

Mom had visitors when she was sick. She told us that one of my sister's came to visit and was right down the hall. Only she wasn't. She also said she was an accomplished pianist, only she wasn't. She never played the piano.

I used to worry that I would not be able to even hold her hand but in the end I was lying next to her on her bed making her laugh. She would hold my hand and not want to let go. I could not understand her words but I tried. I felt guilty when I would have to leave for the day. Or when I would fly home.

Then came that call. This was it. I was flying to say goodbye to my mom.

When I walked into her room and saw her lying there in hospice I was stunned. She had aged. She had sores on her tongue. How did they get there? I walked up to her bed and leaned in close. Mom it's me I am here. She responded. She tried to talk.
I love you mom. I dabbed her mouth with a wet q-tip. She was looking at me. I told her that I would stay with her all the next day and not leave her. She seemed to be trying to say something. "Leaf...leaf......was she telling me to go? To leave? It haunted me. Mom are you asking me to leave? Why would you do that? She fell asleep with her eyes open. I had taken hospice training but I still needed to be reminded that she was not in pain. She is asleep they said even though her eyes are open. You can go. We can never be certain but she will probably not die for a few more days.

I went to the chapel at the hospice. I cried and cried and cried. There was no tissue in the chapel. I could not believe it. Gathering myself I went back to a nurse who assured me my mom would be okay for us to leave for the night. She would be there and call us if there were any changes.

The next morning the phone rang at 5:30 am. I knew. I just knew. My sister came in and said mom took a turn for the worse. They want us to come now. My sister and brother and I threw on clothes and raced over. Walking to the front door we were met by that same nurse from the night before. She was walking towards us crying. I am so sorry she said. She is gone. We were with her and holding her hand and telling her you were all there and that you loved her.

She told us that sometimes patients don't want to die with family around. They want to spare them. Your mom died peacefully. We walked into her room. My sister later said that it felt anything but peaceful. My mom was lying in bed with a teddy bear the nurse placed in her arms. I walked to her bed and placed my arms on her chest. My sister said, "she's gone". I had to feel for heartbeat. She was gone. We sat there for about an hour. There was this Elvis poster hanging on her wall my sister had brought in. Did any of us want it? No! I took the bear she was holding and I have it today. I am sobbing as I type this.

I felt so much guilt for a year. I thanked God for taking her but I blamed myself. Would she still be alive if we had put the tube back in? What kind of life would she have? It was a kindness but it feels so bad. I tried drinking away the pain. It did not work. I tried to ignore it. It did not work. No matter how many times I told myself that she was not suffering anymore I still felt to blame.

In January of 2007 I realized that it wasn't my fault. It was as though the Lord said I could have kept her alive if I wanted to but I didn't. I ended her suffering not you. She is with me now and she isn't in pain. And she understands your love for her. Only then did I feel released.

It is 2008 and I am much better but thinking back on those days is painful. I still hurt when I think of her sores and her suffering. I could never make our relationship be what I thought it should when she was alive, certainly not in death.

But she isn't here. Sometimes I miss her. I miss the times when I accepted it wasn't her being mean but the disease because then everything was understandable.

I just needed to talk about it. I needed to cry.

I just missed her.

I Will Lift Up Your Hand

2008-03-11T15:59:00.000-07:00

There is a story about a man in battle. As long as he kept his hands raised towards God his army was victorious but when he grew tired and lowered his hands the enemy began to win. Knowing he was tired, his close friends came alongside and held his hands up for him. That act caused them to win the battle. That is actually a story from out of the bible. Why I love it so much is the picture it paints about friendship and the difference it can make in the heat of the battle. For this man it helped him stand and win.

We all need those people who come alongside us when we are in the battle to help hold us up and remind us we are not alone. Someone who sees the need and acts. Someone who just holds our hands for awhile.

This is not just who I want to be, but who I am at my deepest core. Am I perfect at it? No. Am I meant to be there for everyone? No. But who I am and want to be is the one who is ready when I see the need to take the time to stop and take another's hand. It also means, allowing others to take mine.

I would like to think that this blog is a place where for just a few minutes I get to hold your hand. I hope that when you go your just a bit stronger, a bit more hopeful and that you know you are not alone.

For in doing so, you hold my hand back too.

I don't want a porta potty!

2008-03-04T22:46:00.000-08:00

So last Thursday I had surgery! I was really excited to get this done as I was in a lot of pain. My left knee was out of a good part of cartilage and my right foot had a bunion. Sexy I know! So there I was Thursday getting into my bland, boring surgical gown, the one that makes everyone around look good because they have color and yours doesn't.

All the jewelry, the watch, clothes, glasses placed in a zipped up minature body bag. I told the doc if I died during surgery I forgave him. I knew I could not fit into this bag so it had to be for clothes. The nurse cheerily asked me to get on the weight scale. I told her it wasn't necessary. I have always believed there are speakers that run through out the other rooms that announce your weight.

Within 5 minutes I was out. I woke up and it was over. I was superwoman sort of.
My foot would remain numb for 24 hours and my knee was still numb as well.

Let me tell you trying to get to the bathroom on crutches is fun. Trying to sit on the toilet and bend your knee is not. I have gotten creative. So here I am on Tuesday and I have slept, read, slept, read and am I ever bored. I can't do much.

I tried taking the day off of pain meds to straighten out other things that were affected by pain meds. In the end of 12 hours the pain won and I took the meds.

I can think somewhat reasonably. My boss emailed me and suggested a porta potty for my bedroom. Okay so that is NOT going to happen. I can't do it. I would rather try by Braille to get to the bathroom holding on to anything than try to go in a porta potty. My post op is tomorrow. I don't know what he will say. I feel stuck. I want to get well fast. Waiting isn't a gift I was bestowed with from God.

So I thought I would just commiserate with you. Or just myself. As long as the doctor doesn't suggest a porta potty I think I will be okay.

Just getting there will be an experience. A friend is taking me.

Well if you ever end up with your body parts stitched up and need to talk I can listen. All I can do is listen. I would listen right now. Well I probably take my pain meds and sleep.

Good Night

Will You Teach Me?

2008-03-04T22:34:00.001-08:00

You come from all over the world. You stop by my blog and sometimes you write to me.
I wish I could ask you questions about who you are, where you are from. You see I know some of you are from Italy and Paris. I am going there this year. How I would love to hear about it before I go from you. From Asia to Hawaii. Hawaii being my favorite place on earth.

I talk about life and things I have learned. I try to write just for me but then one of you found me and then another. I worried about writing for you and I stopped. I have to write for me. I have to write about what touches my heart and then hope if you are touched by it, it is a bonus.

I want so much to be real and encourage. A place to just be "me". And I want to learn from you. What brings you here, what if anything makes you stay or come back?

I want you to teach me about you. Because we all bring so much to the table and time zones and cultures can be met here online whereas we might not have the opportunity any other way. So what will you teach me? What will you teach us!

Jva

When I Hear Your Name

2008-02-02T22:52:00.000-08:00

When I hear your name it immediately stops me. We have so much history, more than I ever imagined. You have been a part of my family for generations but I did not meet you until 1995. With just one phone call you changed my life.

I soon learned that you changed the lives of many others as well.

You wanted to move in and though related, you are not one that I want anything to do with. You are a taker. And you have taken far too much for far too long.

Your very presence like a thief. We who know you have fought against you. You are unrelenting. You have stolen precious years and brought pain and suffering.

You stole my mom from me. You stole all she had and you took a lot of what we had along with it. And you still seek to steal from others.

You did not move in with me but you got close enough. Too close.

One thing you did not steal...my hope. My faith and belief that you will one day be caught and destroyed for all generations to come including this one.

You also have not stolen my resolve or desire to help others fight you.

Your name? Huntington's Disease.

Your death? A future cure.

My family...My mom who died January 5, 2006 and all my family and friends who are impacted by this disease.

A Note In The Box

2008-01-30T19:21:00.000-08:00

I remember being a child and the unexpected joy of finding a card with my name on it in the mailbox. It made me feel so special. Over the years it seems I have gotten more into sending emails. My kids send text messages. What happened to the lost art of sitting down and writing a letter?

Even now when I pick up the mail there is still a part of me that hopes to see a card or letter just for me. One from someone who cares.When I was going through testing to find out if I inherited my mother's disease, (I did not) there was a friend I knew from church who would send me weekly notes filled with encouragement just when I needed it most. I will never forget her for it. They would help change the course of my day.

Perhaps you have done something like that for someone else. You may not know the impact your gesture had but this I do know...you felt good that you took the time to do it.

I work among the senior population in an independent retirement home. Do you know what I see each day? These precious folks live for their mail. They wait for it and love when they receive personal cards and letters.

Whatever our age, we all like to know someone thinks of us.

Therein lies my challenge. First to myself, and then to anyone who might read this.

Who do you know who could use a note from you?

I know for myself it is easy to put it off or feel that my words will somehow come out short of what is in my heart.

Where I work there are some residents who are experiencing their first Valentine's this year without their spouse. There are so many people amongst us who are going through diffult times due to illness, relationship and/or financial struggles.

Still others bring joy unspeakable to our lives and we take for granted that they know how we feel and how they impacted us. Perhaps we should tell them.

I have heard it said that the difference between failure and success is often determined in seconds. Maybe we can take that extra minute and go the one extra mile for someone else this year. Little rutters can change the course of great big ships..our actions can change a life, least of all, our own.

If you have read this note and decided to take me up on the challenge, please write me and tell me about it. Also let me know if it is okay to publish your experience on this post. I promise to respect everyones privacy.

Today it is Janaury 30th 2008. I hope that by December 31, 2008 I have a lot of stories to share. I promise to share some of my own.

May God Bless You

Jva

Lisa

2008-01-29T20:24:00.001-08:00

Dear Lisa,

Happy Belated Birthday! November 24 or 26th right? That makes us both 45. Can you believe it 45? The older I get the more I raise the bar as to what old is. Right now 99 is the new old. I like it that way. I won't need to raise the bar for awhile. I think that is a good thing because I don't think I can raise it much more than 99 so now I hope we are both feeling young. Considering you and I met at 14 and 31 years have gone by, oh wait, now I feel old again.

It has been several years and I decided to let you know that I have indeed never forgotten you. You once told me that you had described me to someone else as an angel God placed in your life. I wanted you to remember that God doesn't and did not go back on his word because imperfect me never has forgotten you.

I guess there was a point where each of us through the years tried to change one another. You in high school, me later on. If growing older and hopefully more mature has taught me anything that would be how important it is to accept one another where we are. Please accept my apologies for the times I did not live up to that.

Lisa, you will always be a sister to me and I will always be here for you. I will always be that angel on your shoulder. If by chance the both of us are alive at age 99 then I will say it again.

Love Jul

It's a Wrap!

2008-01-15T20:36:00.000-08:00

Goodbye 2007
Hello 2008

I was thinking yesterday about how fast my teenagers are growing up. I thought about how we get one chance to raise them. There is no going back to newborn, to their first steps or first day of school. You get the idea. It's the same for life. We can't go back and redo 2007. It's done.

For the most part I feel good about 2007. Sure I would love to have a do-over now and again. But since I can't, I can learn from things I did well, things I would like to have done better and make adjustments. I can say things I should like "I love you" or "I am sorry". Better yet, I can show it. I can go back and do these kinds of things but I cannot replay the day. It's done!

I can also refuse to learn from the past. I have a choice. I can be bitter or better about hurts and injustices that have befallen me. I can also do something that I never felt I could. Something fun or challenging like my dream of learning to fly a small plane, or the challenge of running in a race. I could take that photography class or explore a change in careers. I can face that hard or perhaps frightening task. I can let go off things or relationships that are poison to me.

We have twelve months this year until it's a wrap again. But not one of us has the promise of each of those days. Each day that I awake and can take a breath is a gift. That I can take another one after is another gift. What will I do with that gift. How will I live my day?

What if "It's a Wrap" was for me the end of this day instead of December 31, 2008?

What would I do different? Would I cower paralyzed by fear? Would I live each minute for all it's worth? What would my legacy be?

So whether it's a day, an hour or a year how can I live it knowing there is no do-overs?

I think about that now and again. I want to think about it. I want to care. I want to live today not just go through the motions.

How can I impact others? How can I make a difference!

BEFORE..."It's a Wrap" is said on my life!

Jvabean

2007-11-04T17:43:00.001-08:00

Well this is who I am! Wait, it is a picture of who I am.

I think I am much more than a picture. I hope I am at least.

I attended a memorial service for a young man I posted about earlier.

He was only 18 and was shot and killed trying to help break up a fight.

I ended up comforting several young men who were his friends and co-workers where I work. As they shared their stories and the memories of the friend he was I found myself feeling very maternal. I have boys that are both older and younger than these. No, I am not old. I inherited the oldest who is 21 and my own oldest is almost 17. Somehow though I see them as son's.

How would I respond? I would listen, listen some more and offer arms to hold onto or wrap them in a hug. There is no need for many words. Watching his mother, father and brothers was difficult. I could not imagine their grief and each time I tried it hurt too much. I don't want to imagine.

What is it within me that has this pull or calling to bring comfort to others? I have been this way since I was a little girl. I can't fix things or people. I can't fix most all of the problems. I am not supposed to. I just know that I have a deep compassion for others. A compassion that has boundaries and knows when to step forward and when to stay still. A compassion that knows the difference between helping and hindering. One that accepts it may be this moment I am privileged to share or sometimes days, months and years. I am okay with that because I have no agenda.

I can hug these kids and bring comfort and never see them again. I am fine with that. I feel good about being what I felt I was supposed to be for that time and those moments. I don't need the attention or any recognition. That isn't what it is about.

You know we are so privileged to have these moments where for just a time our lives intersect with another and if we are really fortunate we come away with much more than what we gave in the sense that our giving meant more than anything we could receive. It's the joy and peace, sometimes the pain and sadness that come with risking.

Sometimes in daring to care and love we lose. Like losing Chris. It hurts to care sometimes.

I know that my sadness today will not hinder me from living and caring in the future. On the contrary it is what life really is about. That's a part of me. A part of the Lord in me. And it's a part that I doubt will ever go away.

I don't even know if anyone will ever read or see this. I kind of feel like this is my place to just toss around idea's and lessons learned. Writing it just helps me process. Today I needed to process.

Jva

Something Good!

2007-10-30T21:01:00.001-07:00

After the last couple of posts I need to talk about something a little more uplifting.

So I will talk about Maui!

Next week my husband I are going to leave and spend eight days on my beloved Island of Maui!

I am starting to get excited. I am going to my favorite web site (Google: Maui Web Cams) on this site I can go to a live web cam and see the weather and the beaches on my favorite vacation destination. Last night I went and looked and here is some of what I saw.

For me when I am stressed I imagine myself on a beach like this. I imagine the sand between my toes. I have always loved the water and the sound of the ocean is like a lullaby to me. I think of floating in the ocean and my body being weightless. I just relax. I grew up on the ocean and it still is such a part of me

I look forward to the sunshine because we haven't exactly had a summer here in Washington State. Now it is just a day away from November and I wonder where when summer will get here. I have been waiting since last winter. I am also looking forward to having my husband to myself. He has worked so many late nights in his job. This will be nice to just get away.

No cooking, no schedule, no planning meals, clothes, chores, or anything other than how we want to spend a lazy day.

I can hardly wait.

I am a Maui freak. When I land in Maui I feel like I am home. My body begins to relax.

Okay so I have over a week to go. But I had to share my excitement. I will report from Maui as I will be taking my camera and my laptop. Photography is a love of mine. I hope to post some great shots.

For now I have work tomorrow. I best close.

God willing, Maui here we come!

ALOHA!

Jva

More Perspective

2007-10-30T20:15:00.001-07:00

Perspective!

I work with an elderly independent population. These are folks who average in age of 85. They are not in a nursing home and maintain a good degree of independence. They are wonderful folks with stories that history is made of. It is such a privilege to know and hear their stories. It is a privilege to know, love and be with them on a daily basis.

Then there are people like my mom, like my best friends mom and another dear friends mom who died earlier than expected due to illness. My mom was 64. What would 21 more years meant to her and to us her family? What would it have meant to her grandchildren? We were fortunate in that while she suffered an awful disease we had at least had time to talk and prepare (if you ever really can do that). Things were not left undone or unsaid.

Finally, there are people who are taken in an instant. People like Chris who died this last Sunday of a gunshot wound while trying to break up a fight. People like my friend and boss D. whose husband fell in an accident at work and died a few weeks later. He never woke up. There was no goodbye.

The last two scenarios happen to people of all ages. They happen to infants, to children, teens and adults. How strange it felt to talk to some of the residents where I work who would be certain they would never outlive those of us on staff, only to be talking Monday about this incredible tragedy and loss of one of our employees. He was just 18!

Time isn't promised to anyone. It isn't just for the good or perfect people. Pain and death happen to everyone young and old alike.

So why am I still stuck on this? Because there is a verse in the Bible that says, "Lord show me the number of my days". Another words, let me not take for granted this day.

I have thought a lot about this verse since I first learned I was at risk for Huntington's Disease in 1995. Tomorrow isn't promised to any of us. One day I am standing side by side with a boy that would be hours from death.

What would he have done different with his day? What would I have done if I knew it was my last day? I don't think we are to live in fear like today we might die but at the same time I think it really brings to mind how important it is to live with the knowledge of how fragile life is.

I want my loved ones to know how precious they are to me. That right this moment there is no one I am angry at or harboring unforgiveness towards. I love so many with all of my imperfect heart and I hope and pray that before I die, way before I die, they know of that love.

We can't take life for granted. We can't think because we are young that we have years ahead.
We can't live in fear for the day but we can conduct ourselves in a manner that says I have this sense of the frailty of life and I am not going to miss this chance to love another or to forgive or to reach out and touch a life.

I don't know...maybe it's just me. I thought about this on my way to receiving my test results for HD. That day I was to learn if I would live or die of HD. I saw so many people on the road rushing to work. I wondered if things would be different if they knew their very life was on the line. What would change for them that day? Would they be so worried about traffic and schedules? Would they see how valuable life is?

Every time someone survives cancer or something like Huntington's Disease I know we all know what it feels like to face death. We don't think we have life in our palm. We know that at any time something else could take us. We just know that for right now it isn't the cancer or disease.

We learn what matters and what doesn't. Things that used to irritate us no longer do so to the same degree. We wouldn't want to be in this place again yet it gave us a perspective we would not have had otherwise.

We take soooo much for granted. This next Sunday I will accompany a number of our residents where I work to a funeral for a boy that was just becoming a man. A boy who lived 18 years. Someone who thought he would perhaps have a lifetime ahead of him just like these folks we worked amongst.

It wasn't to be.

It makes me think. How would we live differently?

How would you live? When will you start?

TODAY! Because tomorrow isn't promised.

TODAY! This moment, this breath, this is what we have now. What will we do with it?

Good Tear's!

2007-10-29T21:20:00.000-07:00

The following was forwarded to me. Reading it made me smile and it brought tears to my eyes.
I had no idea that anything I shared made the impact it has. Thank You for your kind words and Thank You God for using this imperfect child. You made my day!

Date: Thu, 18 Oct 2007 09:54:20 -0400From: "Jean E. Miller"

Subject: HD Blog - Cup of Java [Julie Sando where are you?]

Many of us remember our friend, Julie Sando, who was a member of this list for many, many years. Through Julie's beautiful messages, we learned about how HD entered her life when her Mom was diagnosed. Then through all the difficult decision time, when Julie decided to get tested only to get the joyous news that she tested negative which left her with the deepest feelings of survivor's guilt. Through the years we held Julie's hand and heart as she went through the later-stages of HD with her beloved Mom and the struggles she faced within her immediate family from devoting so much time to her Mom's care. Julie's strength has always come from God and He has given her a gift of not only a deep compassion, but one of expression through writing as well. Imagine my surprise this morning, when searching for something on HD [that's not a surprise], one Google entry took me to a new blog called Cup of Java.

Well I remember Julie's on-line name of Jvabean and wondered "could this be Julie's blog?" The article on that link I was taken to was "Even If". As I quickly glanced over that entry I see a picture of myself and Kelly, [one of the HDSA Time awareness ads], then I knew.....YES this was our Julie's blog!! It looks like Julie started her blog earlier this year and I'm sure she'll have a lot more articles, poems and other items to add to it as time goes by. But, for now, for those new to our HD family, reading Julie's articles on being at-risk for HD and what she and her family have been through, will not only validate some of your own feelings, but provide you a little insight to Julie's heart. Julie - if you're still out there, THANK YOU! I can not express my own words of deep appreciation to you for your entry "Even If" in your blog where you talk about me and my precious Kelly. Between October and November of each year is when I go into a period of deep self-evaluation. This time of the year is always difficult for me, between my passing years [65 this birthday] and the anniversary of Kelly's death next month [9 years November 15th], so to read your entry this morning truly lifted my heart and spirits! Like you're entry "Why?" I have learned we need to focus more on the whats we have, the gifts we've been given and those we can and should look forward to. Love you Julie!

Jean

Source: Cup of Javehttp://wwwjvabeans.blogspot.com/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! 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. Even Ifhttp://wwwjvabeans.blogspot.com/2007/03/even-if.htmlIn this article Julie describes what it was like first learning about HD when her Mom was diagnosed and how hard it was facing that not only she, but her children and siblings were at risk. This is a wonderful article describing how, for Julie [and many of us], it was through her on-line HD family where she received the most love and support.

The Cliff and the Choicehttp://wwwjvabeans.blogspot.com/2007/03/cliff-and-choice.htmlJulie's poem about the difficulties and soul searching she went through about testing for Huntington's Disease and how, after testing negative, the sense of "Survivor's Guilt" she felt.

The Burning Househttp://wwwjvabeans.blogspot.com/search/label/HD%20Huntingtons%20DiseaseIn this article talking about her guilt of testing negative Julie uses a burning house scenario to describe what it's like to have tested negative for HD [to have survived a burning fire] yet not feeling any joy because there are still so many people still in that house suffering.

Why?http://wwwjvabeans.blogspot.com/search/label/Why%3FIn this short article Julie, like us all, asks the familiar questions we all have, "Why me?", "Why not me? and writes how God is not to blame. It's not the whys, its the whats; how the hardest thing is walking through the tough stuff and embracing them.

Only 18!

2007-10-29T19:50:00.000-07:00

He was only 18. I worked with him on Saturday at Madison House Retirement. I am the Activity Director at MH and he was on staff as a waiter in the Dinning Room. It was my turn to work on a Saturday as Manager on Duty at the facility.

They had been short on staff in the Dinning Room that week due to illness. I helped out during the lunch hour. Chris was working. He was in a good mood and I recall him talking about his classes at the Vo-Tech School he was attending.

He wasn't someone I knew well but someone I had contact with on a regular basis. One of the many young people who come and work in the Dinning Room. The picture doesn't look like him except in his smile and eyes. He looked younger here. Perhaps his hair being a bit longer made him seem more like in his 20's. Not 18.

Who would have guessed that within hours he would be killed while trying to stop a fight?

He was leaving a party early Sunday morning. He did not drink and was the designated driver. It had been a Halloween Party. As he was driving a short distance from the home of the party he noticed a fight in the street. Stopping the car he stepped out to intervene. A shot was fired and from what I know it went right into his heart. He died instantly.

The boy I worked alongside and talked to would be dead and it just seems so unreal to me that it happened. I am stunned and numb.

It was so useless. It's all over the news today. The staff and residents are saddened. It's pretty quiet at work today as we all grapple with our emotions and the realization that he won't be back...ever!

My son is just over a year younger than Chris. How many other kids would have tried to stop the fight? And shouldn't they? Should we walk away or do we try to help?

Why did this other kid carry a gun? They were all from the party. So I watch on the news and see flashes of his vehicle in the road. I remember that car in the parking lot next to mine on occasion.

Well I don't know the point of this post other than to say I am sad and I am sorry for him, for his family and for the one who will have to live with this guilt on his conscience. May something good come out of this very bad tragedy.

God's Speed Chris! The rest of you out there....be careful...you matter!

My Other Kidney!

2007-10-24T21:09:00.000-07:00

I first met Carla in 1980. She was being the kind of friend to my friend Susie that I should have been and once was. For that, I did not like her.

In 1980 I graduated High School and my parents decided to get divorced. I felt like a ship without a rudder. Like a rug had been pulled out from under me.

Susie had been my camp counselor during the summer of 1979. We bonded quickly and she became a great big sister, mama hen and Godly influence in my life. I wanted to be just like her.
Unfortunately not long after summer camp my parents informed me we were moving to another state.

Carla who lived close to Susie and attended the same church became the friend that I no longer could. During that year in Washington State while my parents marriage fell apart, Susie became ill and was diagnosed with Lupus. It was so difficult to be so far away.

As soon as I graduated High School I moved back to Fresno, California. In the midst of this time I was struggling emotionally. I had nothing to give to Susie. I was in so much pain myself that all I could think about was how to rid myself of the pain inside. There was no room for Sue no matter how much I loved her.

After months and months of pleading for me to attend church with her or to just get together and my constant excuses she gave me the space to do my own thing. When a singing group I had loved was scheduled to come to town she called and I agreed to go. Waiting in line outside the church I saw so many families and people that were happy. I was miserable. I wanted to run. Carla who was with us began sharing her testimony. I pretended not to listen. She talked about her alcoholic father and how her brother accidentally shot himself to death. I was stunned. I would not show it. I remember at one point she stopped and took a hold of my arms and looked me in the eye while saying she understood. It shook me like nothing before. I didn't want anything to get past this wall I erected around my heart.

During the concert my heart continued to be softened. I still remember the words to one of the songs. "Why should I worry, why should I fret? I've got a mansion builder who ain't through with me yet." I thought to myself, you mean God could still do something with my messed up life? I had already tried suicide and drugs. Did He still care? I wrote a note and passed it to Carla. "Would you pray with me? I wrote". During intermission we got on our knees and I asked Jesus to forgive my sins and be my Lord and Saviour. When we finished and sat back on the seat I saw Sue sobbing tears of joy. I know her prayers paved the way.

Carla began to be someone I could confide in. I adored Sue but saw her as somewhat of a saint. Carla was more open and transparent. I felt I could be real with her. I related to her.

For the next few weeks I learned as much as I could in our time together. She was to be moving soon and I wanted to grow so much in my new walk with Christ. Often in my childlike exuberance Carla would be smiling with a chuckle. "Oh Julie" she would often say.

She was also quick to point out that anything good I saw in her was the Lord. She did not want credit for anything.

After she moved away I cried. My big sister was gone. I would end up moving back up to Washington State within a few months and where I have remained to this day.

Over the years we would all keep in touch. Usually with Carla I was the one hunting her down.

One day in 1993 our friend Sue called me in Washington State. Her Lupus had gotten quite bad and she was needing a serious operation. If they paid for my flight would I come to Fresno to be with her? I had just had my second son Alex. I agreed to go and carried Alex on my lap.

During the visit I had such a good time with Sue. I also saw another mutual friend Cheryl. I had yet to see Carla and it had been a few years. One night after Sue got home we all got together at her house. As we shared our stories and caught up it was so special. Something seemed sad with Carla. She was struggling in her marriage. Walking her to the car to say goodbye I gave her a hug and she broke down and cried. I prayed with her and said goodbye.

All that night and the next day as Alex and I flew home I had her on my heart. The next day I called her and asked if we could study a book together. She was hesitant but agreed. I truly believe that was the start or continuation of a friendship that would last forever.

The book was called "Lord Heal My Hurts". I sent her a copy and we began to share notes each week on what we were learning. Little by little as we prayed for and held each other accountable, things in our life were changing.

Not long after her family flew to Washington to be with my family for a week. Our children being the same ages was a blessing.

I am skipping so much in here. How do I write all this?

One day I asked Carla what Co-dependence meant. As she read off the definition I realized it was me. That began a journey into healing of my past which included sexual, physical and emotional abuse. It included counseling and working through the hurts of my past. It meant me walking through truth and pain. All the while we practiced boundaries in our friendship.

She would not fix me. She would not let me depend upon her more than God. God was who I needed to turn to. I learned to grow in such healthy ways.

In 1995 I learned I was at risk for a fatal genetic disease. For five years I did not test. All this time my friend walked with me respecting my need to not talk about it yet asking often how I was. We shared so much.

I walked with her through struggles in her marriage and she with me. After five years I tested and she and her husband flew to Washington to be with us for the results. I did not carry the fatal gene for this disease. My mother would later die from it.

Within a year my husband would inform me that he did not love me anymore and wanted a divorce. Still my friend remained steadfast. Her truth and love kept me anchored in the Lord and His promises. Her allowing me to be "real, imperfect and human assisted me in my healing.

Now as I am happily remarried we keep walking. Our kids are teens. Almost out of the house. She has lost her mom recently. She struggles in her marriage. She turns to the Lord and finds her strength in his promises. We walk the road honestly and humanly together.

I believe in hope for her. I believe in God in her. Her husband once said you two must share a kidney. I believe it. I have lost a great many people in my life including Susie who passed away from Lupus several years ago. Carla and I were two of the ones asked to speak at her funeral.
And my mother two years ago. Carla lost her mom a few months back. It has been a long, hard road. There have been other trials as our kids have grown and faced the challenges that go along with it.

Through it all we have been there allowing each other to be normal, real, imperfect and yet always pressing each other toward the Lord.

I love my friend more than words can say. It is a love that is Godly. Not like this world. It's not physical or sexual. It's like she is my twin. I love her like she is a part of me. She is my sister and she knows me like a book. She is my mensch.

For her I would die. I have a friend who has been with me for 27 years. I was 17 and she was 20. We are now 45 and 48 respectively. We are each married with children. We live two states away and yet just by the sound of her voice I can tell how she is.

We have a friendship that is healthy and good. One that uplifts and encourages. One that understands, forgives and has grace.

I can't imagine making it this far with out her. Nor can I imagine not ever having her in my life.

I am so blessed to have this gift. Of all the people in this whole wide world I was blessed and gifted with her friendship. And I am better because of it. Better as a friend to others, as a wife, a mom, a sister, a friend. I am richer.

No, my chum is not perfect. Just a perfect friend for me.

I love you my lil big sis.

Jewel

Laney's Mom

2007-10-24T20:50:00.000-07:00

I just received the email from Laney. Better known as Sunshine Cindy. Her mom is in a hospice in Maryland and about to meet the Lord. She asks for prayer especially for the the grand kids who will really miss grandma. Nothing once again for herself.

Laney loved her mom. This road right now is difficult. I remember getting on the plane that would take me to my mom in her final days and hours. I remember thinking, this is really it.
How do I walk this road? How do I smile right here and now when inside I am so afraid? How do I board this plane and wait out this flight knowing what is ahead. How do I go to it when I want in part to run from it.

I am not strong enough and yet I must. I want to be there. What will I say? What will I do? What will it be like? Can I do this? How can I not?

Walking into the hospice room this was it. It wasn't a dream. It was now and it was happening and all the years of growing up. All the good and bad were now culminating in this final few moments. The strong woman was breathing her last. The body showed the battle scars.

I know Laney. She will get in her moms face and whisper words of love while praying prayers of comfort. She will stroke her moms face and touch her hand while her mom grabs onto the hand of Jesus. She will cry, she will mourn. She will celebrate what her heart knows even though the pain is there. For many moments she will wish this was a dream and wish her health. But in the end she will be happy and wish her peace and wholeness.

Laney knows this close up. Laney has this disease. What Laney knows up front we only can guess at and that is just that one day we all will die of something. Life is precious.

I can go before Laney does. Laney just knows that right now there is something within her that won't heal. But she also knows she carries the one within her who can heal. Who can heal on this earth or in heaven. She knows the ultimate healer.

I ache for my friend. I ache for the road she must walk. I know this road. She will walk her own road and I pray she escapes some of the pain that I did. Still, it will hurt.

I am so thankful that this life is not the end. That someday we will see our loved ones again.

HD can take a lot but it can't take eternity.

In honor of my friends journey I offer this tribute. Another HD angel is about to gain her wings and in the process may God bring the ultimate comfort to her loved ones.

I love you Laney. We who know you love you too.

My Hunt-Dis Friends

2007-10-24T19:17:00.000-07:00

Where to begin. I don't know where you all are but I hope that somehow this gets to you.
I miss you so much. I had no idea that there were a number of you who missed me. I remember posting quite a bit some years back when I was at risk and going through testing for HD. I felt like I belonged then. In my way I was a part...I was the at risk part. Everyone I met became like family to me. I cried, I prayed for and loved so many of you. And I know you did the same for me.

When I got my negative results it was like I didn't quite fit in the same. I was the free one. I was also still someone who's mom was battling the disease and who's siblings had yet to test.

I went through burn-out trying to pay off that debt of being negative. I was into every one's life but my own. My own life became enmeshed in others and the people near me felt neglected. My whole identify was changed by HD.

Backing off and seeking counseling helped so much. I never stopped caring. I just had to take care of me before I became completely impotent to be of any use to anyone else. That was difficult to do and I know some did not understand.

My marriage dissolved I became a full time single mom and worker. I also got healthy.

In the midst of this I never forgot my HD family. I was afraid if I jumped back in I would fall back into neglecting my family. My divorce did not occur because of HD or the community. It occurred because of an affair that he chose to have.

My mom passed away two years ago last January. I took it hard. I was there. It took me a year not to blame myself for her death. She pulled her feeding tube out yet again and this time because she had no quality of life left that we could see, we told them not to put it back in. But for a year the what if's kept coming. In my mind since her death I could see her lying there on her death bed. Did I cause this I would think?

Nothing could take the pain away. Not alcohol, not any form of distraction. After one year of this I was tired. I woke up one morning toward the beginning of 2007 and prayed. God I am so tired of this pain. I feel so bad. But it was like something was different. It was as if I could hear God saying that He was and is bigger than all my efforts or doctors or whatever. That He took her when He wanted and not before. That He could have kept her going without feeding tubes if he wanted. But He didn't. And He didn't want her to suffer anymore. And so He took her home and made her whole. I didn't do it. He allowed it out of love.

Once that really sunk in I stopped blaming myself. It still hurts but I feel much better. The Survivor guilt is minimal. I have spent 2007 healing and back to myself.

This disease takes a toll on everyone in some form or another. I wanted to be super woman but I am just human. Maybe that is why I have this blog. It's a place to just be me.

If I can in my own imperfections be of some encouragement to another than that is a God thing because I know in and of myself I fail.

It's okay to do that. I accept that in myself.

So what do I have to offer now? Well, I walked the road of being at risk. I walked the road of testing. I have been a spokesperson for HD through the media and on a local level. I have also learned my own humanity and shortcomings. I have lost someone I love to this disease and I still have three siblings and a niece and nephew at risk. So, it didn't leave me when I tested negative.

It is still here. And as always, I pray for a cure and will love with a love that can't be explained my fellow soldiers in this fight.

I am here. I am so not perfect. But I am here.

If you have read to this point....thanks. We all still need each other right?

This is from my heart to you.

Jva

PS. I remarried two years ago in July. I am so happy. It is a huge gift in my life.

Actions Speak Louder Than Words

2007-09-20T21:12:00.000-07:00

Sometimes, despite my best intentions I fail. I promised someone we would go to a baseball game. It was something we used to do once a year. It didn't matter if our team won or lost it was the ritual that we enjoyed that made it so special.

First we would park and stop at the Kettle Corn stand just outside the stadium where I would pick up a back to eat during the game. There would always be a pretty full bag left over after the game but it was still a necessity just the same.

Once we entered the stadium we would locate our seats and then we would walk the perimeter of the stadium checking out the various food vendors. At some point we would stop and watch one of the pitchers practicing through the chain link fence.

After completing the full circle around the stadium we would head off in various directions to pick up our dinner. Meeting back at our seats we would settle in and enjoy dinner and anticipate the start of the game.

The rule was always the same. If a ball flew up into the stands I would duck and he would catch it. Then he would give me the ball. I still don't have a ball.

As the game began and the innings passed we would cheer, critique and he would advise me of various aspects of baseball . I will never forget our first game. He told me that I was his favorite person to watch games with. That I was a lot of fun. I loved that.

When the game ended and the crowds headed out I would place my arm in his and he would safely guide me out of the throng and back to the car.

It's been a few years since that time and we have some catching up to do. Several weeks ago I mentioned to him that we should go to a game again. He told me to pick one and we would go.

I said I would and promptly forgot. He didn't say anything. Not until today that is.

He said my actions did not match my words and that it has happened more than once. He reminded me of my promise and how that affected him. He didn't put a guilt trip on me or take it out on me in anger. He just told me how he felt.

You know what? He was right. I could make excuses, I could blame this or that. I could say how busy I was but in doing nothing I said he wasn't important. I told him that I am not a woman of my word.

In the end we all fail. We all make mistakes. I apologized and he forgave me. I needed to apologize. I needed to acknowledge his feelings. I needed to not brush them off.

I am a person of integrity. My word is my bond so to speak. When I don't live up to that I care. I never want to come to a place where it doesn't matter to me when my choices affect others.

Because in the end I want to be a wife, mother, daughter, sister, friend and worker that everyone can count on.

Right now I need to get some tickets to a baseball game. I'm going to spend some time with my dad.

Prayer for David

2007-03-20T14:58:00.000-07:00

My brother in law David is in Afghanistan as part of the International Police Force. Right now they are in a very dangerous area. This is his most recent email to his wife (my husband's sister). David is the one standing in the back row, second from right. We pray for their safety and the safety of all those serving over there.

Tuesday morning here. We came to do reports. When we were in Takhar yesterday, the border police came in and said they stopped a bus and found four IED devices on board. It was found about two miles from our compound. They just came in and said one of the checkpoints we went through yesterday was attacked, and all the local police officers were killed. So things seem to be heating up. Some probably because their new year starts in three days.
Miss talking to you and the girls everyday. They are saying they are trying to get wireless to our hooch's in about ten days to two weeks. Only problem with that is that my wireless doesn't work to good. Just wanted to say hey.

Letter from my sister in law regarding her husband Dave. This was dated 3/19/07

I just wanted to ask you-all to say an extra prayer for David. They have sent David and three other Dyncorp guys to live at the German base, which is just a half a mile from where he was. They are going out in Humvees, which is better as far as safety, but they are more of a target being with the military.

With this move, he is unable to communicate like before as the German base is not equipped with Internet access at this time. I have talked to him just one time for about 2 minutes the last three days. He was fine when I heard from him late last night. They were getting ready to leave on a convoy. He didn't specify where, but to an area where they were having problems.

I saw on the news that they had one of their convoys hit today in Kabul. I haven't not heard from David today and assume that he is okay, but it is a emotionally draining not knowing 100 percent that he is okay.

Please say a special prayer for him and the men he is serving with in the Army that the Lord will keep them safe.

Thanks

When I Am Sorry

2007-03-19T16:12:00.000-07:00

I am not the kind of person who is content to go along my merry way when something is wrong. If I have offended someone I usually want to make it right without wasting time! Granted, there is something to be said for taking the time you need to sort things out in your head and to that end I am not opposed. But for me, to leave something hanging out there for hours or days on end does not sit well with my insides. I am not happy when things aren't right and I really shouldn't be. It shouldn't be easy to live in my skin when I have caused a grievance. I have more trouble sometimes forgiving myself than accepting the forgiveness of another. I don't want to fail!

I remember once saying this to my dearest friend. Her response shocked me, "How dare you think so much of yourself that you think you could even "be" perfect". Now, wait just a minute I thought but then I stopped because she was right. I was speechless!

So why am I writing about this today? Well as it turns out I needed to ask my husband's forgiveness on this fine day! I grumped at him yesterday (after church of all things). I wanted something actually a few somethings and I really did not want to wait. I felt that I had been waiting and I just didn't want to do it anymore. That's always a good excuse right? Wrong!

So I was frustrated because he being of sound mind thought we should save for these items and not just charge them on our credit card. Me being of delusional mind thought he was being a bit frugal. So I just got quiet. Not to punish him but because I didn't know what to say and thought it best to say nothing. Well this was unfair to him but I couldn't shake it or reason it away. The more that time passed the angrier I got. I ended up a bit snippy. Snippy is not pretty on anyone and certainly not on me. I don't even like me when I get that way.

This morning as I awoke I knew that I was wrong and owed him an apology. Not just that but also a huge thank you for being the steadfast man that he is. He could have caved (I'm so glad he didn't because I wouldn't have been able to take advantage of that if I could - which made me madder). I opened my bible and began reading from Philippians 2:1-5.

Before I go any further.....I have to tell you that God got me right between the eyes. It says,

"be like minded, having the same love, being one in spirit and purpose. Do nothing out of selfish ambition or vain conceit, but in humility consider others better than yourselves. Each of you should look not only to your own interests, but also the interests of others. Your attitude should be the same as that of Christ Jesus."

So now I am really seeing the error of my ways and I immediately ask God's forgiveness. Second, I asked for Rod's. I told him how sorry I was and how I so valued his wisdom and love for me. I know he would give me the world.

I am happy to report that he has forgiven me as I knew he would. He also said that I never get like that and that he feels like he does it more than me. (I never noticed with him).

So we go on and I not only did the right thing but I intend to follow it up with the right actions. What is that? Not repeating that behavior.

You know I debated whether or not to put this on my blog. I know that more people are reading it now and I want so much to be an encourager. I am so human and I fail. I don't like it. But I live with it and I learn from it. Perhaps, in my sharing someone will learn from me and not make the same mistakes.

I'm sorry, two words.....so important!

I Saw Jesus (Author Unknown)

2007-03-19T09:50:00.000-07:00

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.

I saw Jesus last Sunday. He was teaching a Bible class. He didn't talk real loud or use long words, but you could tell he believed what he said. For just a minute, he looked like my Sunday school teacher, but it was Jesus, I could tell by his loving voice.

I saw Jesus yesterday. He was at the hospital visiting a friend who was sick. They prayed together quietly. For just a minute he looked like our pastor, but it was Jesus, I could tell by the tears in his eyes. I saw Jesus this morning. He was in my kitchen making my breakfast. He then fixed me a special lunch to take with me. For just a minute he looked like my Mom, but it was Jesus; I could feel the love from his heart.

I saw Jesus today. He was praying on his knees all alone. He then began to cry for those he prayed for. For just a minute he looked like a lady from our church, but it was Jesus; I could hear the compassion poured out in his prayer.

I saw Jesus the other day. He was at the grocery store talking to a friend. He then put his arms around them to comfort them. For just a minute he looked like a young mother in our ladies class, but it was Jesus; I could see the concern for others who hurt.

I see Jesus everywhere. Taking food to the sick, welcoming others to his home, being friendly to a newcomer, And for just a minute I think he's someone I know, but it's always Jesus; I can tell by the way he serves.

May someone see Jesus in you and me today!

The Cliff and the Choice

2007-03-14T09:57:00.000-07:00

The Cliff and the Choice

From 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 would 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.

It takes courage to be a part of HD. We cry, we get mad, we are afraid, we laugh, we risk, we are weak, we are strong, we make choices, we live and we die ALL OF US...but we get to do something that some people will never do when we step off that fork in the road...We get to soar!
*****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: Since writing this I have journeyed through many emotions. Survivor guilt being one of them. Through time and understanding and mostly prayer, I have come full circle. I am becoming whole inside again. This past June I attended my first HDSA conference in Arlington Va. I loved every part of it. What a joy to go and learn and to be able to come home and use that knowledge in my care of my mom and in helping the HD community at large. The other highlight was meeting a number of our online community. All I can say is these wonderful people are part of my heart. Lastly I recently had the privilege of being asked to be Co-President of our area HD chapter here in Seattle. I am humbled and excited to be a part of something that touches so many. It is my privilege to be an ambassador for the cause of HD. I give a lot of credit to the family here online. I am who I am because of you being a part of my life. I love you.

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

2007-03-14T09:47:00.000-07:00

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)

Even If

2007-03-13T16:39:00.000-07:00

"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?

Within a few weeks time we would purchase our first home computer. As soon as we had this hooked up and connected to the Internet I found all the information I was lacking and then some. Right away I located an online chat for people who were interested in or involved with Huntington's Disease. It was on AOL. (It has since been discontinued). I began to read anything and everything I could get my hands (or in my case - eyes) on. While there is something to being informed I think at the time that I digested a bit too much information. It was overwhelming to say the least. I had so many questions. I wanted to know more than just medical jargon, I wanted to hear from people who had experience in dealing with HD from day to day.

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.

Jean was a woman who was lovingly caring for a daughter who was positive for HD and in the thick of the disease. Kelly was her only child and Jean worked tirelessly to find ways to assist in the care and cure for Kelly. There are not enough words to adequately express what their relationship was like. We all felt like we knew and cared about Kelly because she was such a part of Jean. When Kelly passed away before age 30 it was a life lost far too young. It was also evidence that there are cases of Juvenile Huntington's that proves it doesn't only impact those who are in their 30's and older. In honor of Kelly, Jean would share their story and continue on to help raise awareness and support for a cure. I will share the link to that site here.

http://huntingtondisease.tripod.com/hdlinks/id7.html

When you get to this site make sure to look at the options on the left of the page and click on Jean and Kelly's story.

I would highly encourage you to check out this site. It will touch your heart beyond measure. More than that it will give you an idea of what those with HD and caregivers go through. It also is a story of the incredible love of a mother and daughter. Jean is one of my heroes.

Dearest Jean, I have never forgotten and I shall never forget you and precious Kelly. Love Jva

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

2007-03-13T15:23:00.000-07:00

I am both humbled and touched by the response to The Burning House that I wrote and posted on this site. I went to the HDAC web site and was very touched by the responses that it generated. It is frightening to put your heart and experiences out there for others to read and perhaps judge. If in doing so you have been encouraged in some way then it is worth the risk. We all just walk this road of life together. If we are very fortunate we can help another along the way. Thanks!

A Cherished Photo ~ My Mom and I in 2004

2007-03-12T13:23:00.000-07:00

Goodbye For Now by Kathy Troccoli

2007-03-09T15:05:00.000-08:00

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

2007-03-09T14:59:00.000-08:00

I found this photo with the caption below it in a store several years ago. It means so much to me. Here is this little girl standing in the rain and she is standing there taking it all in. She is playing and laughing. This really was how I saw myself. There had been so much rain in my life at that point so to speak that it would have seemed normal to run inside and seek shelter.

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!

Life Comes Back

2007-03-09T14:24:00.000-08:00

Why?

2007-03-08T16:39:00.000-08:00

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!

The Burning House

2007-03-07T16:14:00.000-08:00

I was in this burning house! It was so hot and it burned my eyes and singed my skin. I wasn't alone. There were numerous others inside with me. I could hear their screams, see their fear and understand their terror. It was my terror too!

We tried to get out but just couldn't find the way. It seemed we tried for so long. Some voices grew silent while others in desperation tried to break free.

Some worked together hoping, praying, begging, crying, pleading. Some were alone choosing to fight by themselves seemingly oblivious to the others around them. We all wanted out. It was hot, it became difficult to breathe. We couldn't see our eyes felt the sting and the burn.

Something grabs a hold of me and pulls. It is now dark and cold. I stumble to the ground. I have been rescued. I am shocked. I cannot seem to shake this stunning change of events. I hear a voice in the crowd, "thank God you are free", thank God you are alive", you should shout for joy, dance, celebrate. I think to myself, perhaps I should but somehow I cannot.

I can hardly stand. I get to my feet and as I catch my first full breathe of air I begin to walk. Step by step I walk back toward the burning house. I want back in. I want to, I need to, I must try to bring the others out. I am almost to the blazing door, I am reaching, I'm here, I'm coming I yell.

Hands are pulling me back, away. They won't let me go. Arms surround me pulling me farther and farther away.

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.

So here I am and the house it still burns. It never stops burning and more people are inside, trapped. There is no hose, no water, no amount of effort that can stop it from burning. Until they come up with what will finally put that fire out I will always remember and I will always know what it's like and I will be in pain for those who remain.

That is what it is like to test negative for Huntington's Disease for me. Traumatic, indescribable and life changing. And all I dream about is someone handing me the hose so I can help put it out.

The Pebble

2007-02-27T16:21:00.000-08:00

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!

Some of the photo's I have taken in 2006

2007-02-08T16:49:00.000-08:00

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!

2007-02-08T16:38:00.000-08:00

I love this photograph! An incredible beach in Maui all set for a romantic dinner for two!

This is something that really speaks to the heart of the island. Great landscape, very romantic, and incredible food. The sound of the waves and the smell of gorgeous flowers....MMMMMNN!

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

2007-02-08T16:31:00.000-08:00

There are so many ideas swirling around in my head.

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!

Jvabean's Blog

2007-01-23T16:40:00.000-08:00

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!