Hi everyone...my name is Lauren Jones and I'm 23 years old. I lost my father Rick Jones to Huntington's 3 months ago at the end of November. He was diagnosed when I was 18, and had a 5 year battle with it. I feel lucky in a sense because many people suffer with this disease for much longer. I have to keep looking for the positive things; because with this disease, as you all know, there are few positives. My heart is broken, and I don't know who to talk to about it. I have my family obviously and my 3 other sisters, but I don't want to keep bringing it up to them because I know they're all trying to deal with it as well, and continuously bringing it up might make it harder for them.
This sounds biased and also cliche, but I couldn't have asked for a better father. He truly was the best. He was diagnosed with Behcets syndrome when I was a baby-which caused him to lose most of his sight. Then, he broke his back and it never healed right. So he was already blind and unable to walk properly. There were other effects from the Behcets syndrome, but I won't waste too much of your time talking about that. Then he was diagnosed with Huntington's. I was angry with God-I didn't understand why he would give this horrendous disease to my father when he had already been through so much. My father, whose faith in God could put most people to shame. Most days, he hardly had a penny to his name, but whenever any money came his way, he paid his bills and the rest was mailed straight to us girls. He never kept anything for himself. This is a man who would ride his bicycle 30+ miles each way to our soccer/basketball/cheerleading/volleyball games since he couldn't drive and we didn't live near him. Everyone warned him of how dangerous it was since he was legally blind, but he refused to miss out on the lives of his girls. Not a day went by where he didn't tell us how beautiful and amazing we were, and how proud he was of us. He wrote us poetry and handmade us cards for every birthday, holiday, and sometimes "just because". Everytime I told him I loved him, he would say "I know you do, and that's what gets me through the day. The love from you girls can get me through anything". He thanked God every day for making him such a "lucky man". He truly believed he was the most blessed man on earth, because God had given him "four beautiful daughters". Most people would turn their backs on God if they had gone through everything he had, but it just made his faith even stronger.
Then he was diagnosed. And since you are on this Huntington's forum, you are obviously familiar with how this devastating disease progresses. My sisters and I were fortunate enough that he was never so far gone that he didn't know who we were. Any one of us could come up from behind him and say "Hi Dad!" and he'd know exactly which one of us it was. Past that, he didn't know or understand much anymore. But I don't need to go into detail of that. You know how it goes.
I've had a hard time dealing with the grief, struggling through guilt, and wishing God would bring him back to me. It seems to just get worse, not better. Any thoughts or words of advice would be greatly appreciated. It feels good to be able to get this off my chest to people who understand and know what I'm going through.

-A poem my Dad wrote, called "My Eulogy" (I'm assuming it was written when he found out he had Huntington's)
"I lived a happy life.
Don't think bad thoughts of my dying, for in dying I'm free from pain. My soul has always been God's. I'll wait for you girls in eternity heavens.
My eyes aren't worth much, but I've seen beyond seeing and seen the love in the eyes of my beautiful girls God shared with me."



Edited 3 time(s). Last edit at 03/01/2009 04:38AM by RicksDaughter4.

Hi Lauren, and welcome to the forum! You are so young, but so mature and wise! You speak of your dad with so much love and admiration, and those precious memories are what will help you through this difficult time.

HD brings so many issues that affect your entire family and social network. You will need to work through each of these issues, one at a time, and it will be very overwhelming at times, and often when you least expect it. We are here for you whenever you need to share, but please also see a HD counsellor too!

Take care, Shy

HI Lauren, WOW! I just know your Dad is looking down and smiling at you with pride right now after reading how you honored him on this forum! He sounds sooooo very special, like every girl's dream Dad! I've googled Bechet's Syndrome and see he really did have a huge challange in life. It may have even sped up his progression of HD since it can affect swelling in the brain. Not sure if that is a good thing or not, but I think you're right at least he didn't suffer too very long with HD. Thank you so much for sharing your Dad with us, it was very special. Stay with us okay? Love, Pat

hi Lauren, welcome to the forum. You can tell that you really loved and admired your dad, and he loved you so much as well. Your dad gave you such a great gift.....an example of walking with God. I don't know why good people have to suffer as your dad, it's so hard to understand, but I feel like God is so very proud of him and tells him so now. Your dad seems like someone I would have loved to met. he was very dedicated to you girls and loved God despite his trials on this earth. I wish you the best.

loren,

listen, im going to repeat a story someone told at a memorial
i went to...
-----
a man was walking on the beach at sunset with God, as they walked along, two sets of footprints were left in the sand behind them...

the man talked to God about his life, and he said: God, see back there
20 years ago when i had that big catastrophe in my life, there is only one set of footprints, than again back there ten years ago, when i had that break down, there is only one set of footprints behind us.
and God last year when i thought i couldnt go on anymore, see? again there is only one set of footprints...
God why do you always leave me when i need you most?

GOD SAID: SON, YOU SEE THOSE PLACES WHERE THERE WERE ONLY ONE SET OF FOOTPRINTS?
THOSE ARE THE TIMES WHEN I WAS CARRYING YOU...
--------

it seems to me, your dad believed that god was carrying him...
maybe someday you will look back and see where god was carrying
you.

be strong, live your life and do all the things your dad dreamed
of you doing. be happy for every moment. god and your dad gave
you the gift of life, dont waste it.

one thing you know for sure, we all end up in the same place. so
in essence, we will all be together where ever that is. believeing
in something cant hurt you, it sure didnt hurt your dad.

its right to be angry at his death and everything that we've been
given, but you have a good gift right now, and thats your sisters
and your mom if she's still alive. and you should live wild and
free for your dad...

Thank you so much everyone for all of your kind words. You said a lot of things that I needed to hear. I've been fortunate with the support I've had from others...but they don't always know what to say since they've never been through it. I know you all have, and your support really means a lot. Please let me know if there's anything I can do to help any of you. I'm grateful to have found this forum.

Hi Lauren-

What a beautiful man your father was - we could all learn so much through how he lived his life - life is a gift and he treated it as such- we all have burdens whether it be HD or something else and he lived as God would want us to and as we all should.

He taught all of you so much and what he taught you were the truly important things in life. I even learned from him through your email here.

Your were truly blessed and I know you all were truly a blessing to him.

We are all very sorry for your loss but he left a wonderful legacy behind.

Shar

Your the kind of daughter I wish I was to my dad... he would be sooo proud of you, you speak of him with much love and admiration