Saundra Blankenship

Happy Birthday Beth!

Happy Birthday Sweet Daughter.

Celebration is in the air she is the big 24 with 24 of her closet family and friends the party started at the Bella Italian in Cape last evening. Table for 24 please with a "Hot Stuff" musical theme to boot.

Yes it is her Birthday and she will SMILE if she wants too. She is having a wonderful dinner party to boot.  As you can see many of have come out to celebrate this special day with their friend and loved one. Ain't she beautiful and happy, it does my heart good to see and feel her excitement on her birthday. 

You know the electrifying feeling that a girl gets when her girls friends all show up "oh yea", this is first arrivals looking for a good time with the party girl. Nothing like girl power no matter what age we are just more powerful when we become woman and they have all grown up and are beautiful woman. Our Beth is all about her girlfriends she loves to throw parties and go to parties of all kinds with the girls. Hey girls spa party next week. Beth not again.

With husband Mark at her side and party planner to boot. Wow he did good. "LOL"  We are so proud of her and Mark and they make a beautiful couple when God gave her Mark he gave us all a wonderful blessing. Love you Mark. He hates that but oh well that's why I am the mother in law and he is the son in law, I get to say what I want and oh how he tries. Yea I let him win once a year very balanced. HA! HA! Little inside humor. Once again he pulls off a awesome birthday party for his lovely wife and lover the "Hot Stuff" birthday girl his Elizabeth now that she is a woman she prefers her full name. The world may conform but Momma never will she is and always will be my BESSY. Had to get that in somewhere. Love you Bessy.

  As always she shared and spent time with everyone and as always found her way to her Momma. She is the greatest gift that God has given me and I truly love, honor and respect her with all my heart and soul. Beth you make me proud and the choices you have made in life have all brought you to this moment and you stand true and be proud of who you are and where you are taking your life. Remember that your birthday is has exciting for me as it is for you because it was on this day that I too experienced that wonderful surprise of pure joy when you took your first breath and life filled you up to say hi with a cry and the warmth and beating of your heart next to mine at 7:07 a.m. on this very morning is when my life became whole because of you.

Beth's Birthday Party Photo album click on the link below:

http://saundrablankenship.typepad.com/photos/beths_birthda/index.html

Facing Life With a Lethal Gene - New York Times Article

This is an article (see link below), that was shared through the Huntington's support group that I belong to on yahoo. It is a must read for all who have friends or family that are affected by Huntington's. The article expresses the true sense of what it is like for anyone at risk or positive of the Huntington's gene.

I truly believe the title is exceptionally true of how I am feeling right now knowing that I am positive and my own CAG is 42 and signs are already set into my own life. I had to laugh a little about the forgetfulness of not being able to respond or comprehend jokes as that has been happening for several years with me and today I just got the reason why it is happening. A few things that I can recognize is that I drift away longer for example when talking on the phone or in conversation people say are you there as if I left the conversation and the truth is yes I do and I actually drift in thought and takes longer for me to return to the present task and also when I am talking with people I talk all over the place and can not stay focused on what is at hand. These are small for you but big for me when I at 42 must recognize and come to terms with the fact that Huntington's is destroying my brain every second, every minute, every hour, every day and forever so think about that for moment and now how did that feel? That is the same feeling magnified for me and anyone facing this disease. I am not trying to get you to feel bad for us just to make you prepared for what is to come in my future and my family and we are just like you we love each other so much we are searching for a greater understanding to help each family member that will face this terrible disease. All this information is so helpful and I just don't feel like I am all alone in this battle and a waging battle it is to fight for our life to be cured from this disease.

When I first realized that I could have this thing called Huntington's was in October 2006 when my mother was diagnosed and tested positive. Reading this article and others that I have read about what it has been like to grow up with a parent with Huntington's is like deja vu for me and my siblings. It's okay though we now know we are loved and we are waging our own war to fight and be strong enough for all our family and friends to gain a deeper understanding at what our family and many around the world is facing every day of there life. I am growing in knowledge and fear is turning into strength with every new day that I face with Huntington's. I can now say with a thread of hope comes an awakening a powerful boost of spiritual awareness and an invigorating sense that I and the many thousands of people facing this horrific disease is laying the foundation for the cure to come. I find that quit rewarding that even though we are facing death on a more profound level of awareness that there are some positives things that will come to a generation through our fight to help bring people to a greater awareness and to help support the Huntington's Foundation Society of America for a cure.

I feel that by testing and knowing that I can now have peace and create a place of refuge for me and my family as we learn how to overcome the stigma and and make becoming caregivers for all our loved ones that has this lethal gene. Our children are watching us and they need us more than you can imagine. We must be strong now for all and not one we are now all melted together in this melting pot to see who will be able to form and create a beautiful ending to such a ugly mutation. For my daughter now that I am positive means she must decide also to test or not test and how can she bring children into this world without the Huntington's gene she is also 23 years old. As the tears flow down my cheeks as her mother a great sense of hurt and quilt that if I could of known then what I know now that her father and I would of at least had the chance to give her life with out the Huntington's gene. When I think of our own children having to face such difficult choices that will actually literally change the life of her unborn child. Yes this is just a few horrible things that this disease brings into her young beautiful life to make life and death decisions at the time that she decides to have a baby. Tough no incomprehensible and down right surreal.   

I am very aware right now of my weakness and the inevitable changes that have taken place and forth coming but sometimes as I have learned though the vast number of illnesses that I have personally faced that I am unique and quite frankly no one else like me will ever pass this way again when my live as come to its final end.

I truly wonder what will you really remember Me or HD?  I choose ME!

Click on the link below:       

     http://www.nytimes.com/2007/03/18/health/18huntington.html?ex=1332043200&en=d069bf5f035ca08a&ei=5124&partner=permalink&exprod=permalink

Mother's Love!

As I look into the future all I can wonder is how are we going to handle this thing called HD. I look into her beautiful eyes and see the light of happiness and living her life carefree and then I wonder once again how are we going to deal with HD.I can't stop praying for this disease to find a cure for all our loved ones, yours and mine. This is my daughter Beth's Family, Mark, Beth and Ryan, I am so blessed to have such a wonderful daughter and son in law and step grand son Ryan with whom I love with all my heart and soul. I want to go into the future and make it whole so that nothing could affect there life, has I have had in mine. Beth has already been through more sickness with me than most go through in a lifetime. In 1990 I was diagnosed with endometriosis and ovarian problems that caused me to have to have a hysterectomy and in 1995 had gallbladder removed and 1996 acute pancreatitis and on investigatory drug 19 months then 1999 diagnosed with Non Hodgkin's Lymphoma it seems as though fighting for my life is all I have been doing for the last decade of my life. So when I hear yes, you have Huntington's Disease can I just say; I think I am numb at this point. I am a fighter and it was Jesus blood that saved me from the Cancer, you see I got saved in the spirit in my  home and believed that Jesus died on the cross for me and I was to forgive and receive the gift of healing the bible says "by his stripes we are healed" yes Jesus bore the strips for us and we can receive this gift through Christ, I did and so can you. Now more than ever I must stand and no he is GOD and healing will come.

I long for the cure for your family and mine. When I think about our family and so many that are affected and those at risk it's overwhelming. That is the difference in this disease than the others I faced, those were about me and not others and not my daughter and grand children. I think of all the family's across this world and I must continue to pray for a cure.

This is my daughter and her family and Beth is at risk and has had no children at this time and is facing some of the hardest decisions she will be faced with in her lifetime. I am so proud of her. She has brought a great peace into my life she is the sunshine and the air that I breath is filled with her energy. She has been though a lot over the years with all the sickness in my life that has affected her and she looks at Huntington's with Momma you are a fighter and so am I and we are going to get through this and things are going to be ok, she says I am going to pray and look on the brighter side. Wow that is my Bessy the little girl that once brought her piggy bank to me to help pay the bills, the little girl that was a magician she loved to put on magic shows, the little girl that every night says momma I love you. I am proud of her and her family they give me great strength and bring great joy into my life. There are no words that could or can describe how much I LOVE YOU, but the greatest gift in my life is you.

I want to encourage you when times are harder than others, when I struggle from moment to moment and you feel tattered and worn. I want you to return her in these words I have said I love you and you are the greatest gift the sunshine of my life is you. Return to the memories we had not the ones HD wants to bring upon us and not the ones that have altered our life. Stay strong my sweet daughter and family for it is your love that gets me though each and every day. I am blessed to have shared my life with you and Ricky, very very blessed.

Tammie's Obituary

Tammie K. Shubert                                                                                                    

Tammie K. Shubert, 45, of Clinton, died Friday, Aug. 4, 2006, at her home.

Funeral services were held Tuesday Aug. 8, at the Pape Funeral Home with Connie Beck officiating.

Burial was in the Clinton Lawn Cemetery. Casket bearers were Brett Mueller, Tim, Mark, Jeff and Scott Kohl and Tim Kohl Jr.

Tammie was born Nov. 10, 1960, in Clinton to Alvin and Ardith Engelkens Kohl.

She was a produce manager at Barnes Foodland in DeWitt.

Tammie enjoyed bowling, cooking, baking, deserts and making everyone happy.

Surviving are her fiancé, Tim Graves with whom she made her home; a son, Brian Melvin of Clinton; her father of Clinton; and brothers, Jeff, Mark and Scott Kohl, all of Clinton, and Tim Kohl of Morrison, Ill.

Tammie was preceded in death by her mother, her grandparents and two infant sons.

Iowa Trip (Tammie's Death)

Ricky and I was so excited to get to return to Clinton, Iowa and see our friends we had not seen in several years. Our long time friends Larry and Linda was moving to Florida and needed help and we jumped at the chance to go so we could see all our friends. We arrive on Monday and arrive at Larry and Linda's where we helped out and left to get our hotel and ate supper with their family. I had been anxious all day knowing tonight I was going to surprise my best girl friend. I had been searching for and had not been able to get into contact with her to let her know we were coming so it was even more exciting knowing how surprised she would be when she opened the door and there I stood. Longing all day to see her and there was no way I was going to wait another day to see her my expections where on a high and I was out of patience already. I went looking for her parents home and finally found it but to me it looked like no one was at home, so I decided to go to Moe's place the place we met and worked the beginning of our friendship. When we arrived we went inside we ask to talk to Moe and the workers said he was in the city with his son and I asked if they knew Tammie and they said a slow yes we think so but if your talking about the girl that used to work here she passed away. Let me say right here thank God no one was in the restaurant at this time, I lost it and my excited emotions turned to great grief and shock. I wanted this to be a dream not reality so now I said No you must be wrong and Moe was finally reached by phone and on the other end I could barely hold the phone and ask and his confirmation was more than I could bare right here in the very place I met my best girl friend, is the very place I receive the news of her death. She is gone no longer with us this is unbelievable and heart retching. I am now searching for her brothers to find her son only to find that her mom passed in Dec, 2006 from breast cancer. The last I knew she had made it through her treatment and things looked well for her too. I knew I had to talk to Brian her son, I have to hear it from him that this is real. Imagine him consoling me instead of me consoling him, now I learn the real fate of my friend and how he tried to find me  for her and how I learn how life events kept me from being with my best friend. We have lived in the same place for over 14 years and had the same numbers for many years the numbers Tammie had both had been changed my cell phone was changed due to the death of my nephew Dylan who we had put the number on missing posters and I had gotten some prank calls so we decided to change it for safety reasons and then in July 2006 we move into our new home and our home number changes and at the same time my friend receives a diagnosis of breast cancer retuning and nothing they can do for her. She is looking for me and I for her as the number I had for her no longer worked and that is the reason I felt she had moved but I knew without a doubt that was still all okay because I would be able to find her through other means. So never did I feel that I would not be with my best friend all week and just be us, best friends and love we shared for each other we were like family not friends. She had come to visit me when I was fighting for my own life and I was not the same at that time and that so saddens me now when you are so sick changes are inevitable. Even more why I was so excited to see her again because more of me had returned but now I would have to let her know what HD was doing to me and now I am even more convinced that HD had changed me so much that I was always in contact with her and then a gap came and that was not us and life has thrown us a curve. I am so distraught over the lose of Tammie it has taken me days to write on the blog. HD does change us and slowly it makes us remember things in different order as to how things really are my family is constantly correcting me dates and events and how they took place and this is what I am saying today that HD has a hold on me. I (Saundra) can dig deep to grasp hold of my memories and try to remember my life has it was and not how HD wants me too. I feel like a puppet a third person in a way in this disease and I am so sad about all this and how this turned out for me and Tammie whom I loved and respected and always wanted more and more missing her so much that it had built a higher expectation to see her that the news of her death deeply shaken my entire being the inner most part of me my soul. We were to stay all week that was the plan Ricky to help move and I to find Jeremiah's grave who was the first son of my late brother (Ricky) and to finally have peace and take pictures home for the family. I am on a mission to find all my brothers children to let them know about HD so we can fight and be closer and that our family is with them and here for them and that we love them and need them and pray for them to have peace and love and hope and faith through this life no matter what it brings upon us we are family and we want all our family to know we are with them always. My brothers oldest Joshua lives in IL and I got to visit and talk to him and his family about HD and most of all to let him know he is loved and we are here for him just call on us when he needs us.  I could not stay all week I became exhausted from the lose of my friend we returned home.

Momma's Day Out!

   My Momma       Yes today was our day out and we sure had a great day. It is a beautiful warm day  today with lots of good ole sun shine and mom sure does not like the cold and I was praying for a pretty day and it was. After I arrived she got ready in her pretty new blue outfit  and she was ready to go out. I told her she was exceptionally beautiful today and got to take a picture of her before we left. I even noticed that she was wearing her wedding rings that she had not worn for a long time since the death of my father at age 55 in 1993 many years has come and passed in her life- time some harder and more difficult than others not only did she bury her husband but a son at age 42 also in 2000 from a boating accident. She has fought to stay strong and independent and I am proud of her for that strength, she has done a great job of taking care of herself through it all.

We have come to notice her good days verses the more difficult ones so much easier now that we understand what is happening. Today was a more difficult day of walking and balance, even though we did not do lots of it today.

Our first stop was for some petrol and off to the city we went she has never seen Beth's house so off we went to go and take a look. She was happy to see the kids in a nice home with a nice neighbor hood, a mother is always a mother the surroundings are important for her to know her grandchild is in a safe place and doing well. Then we went to Jackson to see Ricky and say hi to him. We went to see if one of our family members new car lot was getting built. Then we drove to my home that she has seen from the outside but had never been inside and she was giddy to see such a nice big house and just happy about it. I was taken in by her looking through the house with me and she even had to go up stairs and her balance was not good and this was the first time we have experienced stairs together so I told her that her son in-law would put in an electric chair for the stairs, she laughed said yea that would be good.

Awe I am having such a wonderful time with my mom that I feel like I should pinch myself to see if I'm still alive. Wow this is awesome and my dad and Rick must be dancing in the heaven-lies about this wonderful place of being more at peace right now, she deserves to have this time. Sure she gets kicked up but now we can help her come down with love and understanding and patience. It is so good to finally know how to help her it is great for us we have talked about the change and how we are working so well with her we are just elated and excited we are getting to share and build new memories with our momma. I know she had a great day we stayed here at the house and waited to take Ricky out to eat with us and she had been gone a good six hours from her home but she had a wonderful day. We have recognized that we all can't go at the same time with her but we can each take a day and spend time and she enjoys it even more because the less stressful it is, makes such a remarkable difference for her and us. I feel that now that we know what we are dealing with, we can now help her through and us too. It just feels like a new beginning for us all.

I showed momma the blog today and some of the postings and ask her if she would mind if I posted her picture and she was so taken with the Internet today and what all someone could do and the fact we could make a site about our family and talk and share and she said it was ok to let me share her with you.   

Momma, We Love You

Momma Loves Pizza

It is so wonderful to be able to send flowers and pizza to mom for Valentine's Day and her to enjoy them.

We have been talking how much her mood has changed and she has gained some weight now and we are so thrilled and feel so blessed that she is doing so well. It is remarkable the change it is like a new person, for years she has suffered for so long with great emotional ups and downs and Jesus is on the thrown looking down and blessing her with peace and love. We have prayed our hearts out for this and have received a miracle. Thank you to all who have prayed for our family. Words can not describe how deeply this moves us. We have not had our mom like this for many many years and now she is coming around to us in the time we thought she could have gone farther away but joy cometh in the morning that's what leaps in my heart joy has come and we will enjoy every moment we can.

Our mom has suffered from HD for years and has had horrible emotional and physical affects. We were trying to remember how many times we have been able to take her out to a restaurant and in 20 years plus we can only remember 1 time she would go out to eat. We can't remember a time that she enjoyed a family gathering with out any drama happening. Lately we have been able to enjoy dinner out and helping out around the house and just allowing her children to step up and help take care of her this is so different we are astounded. We send the best "Pizza" several times a week she lovesssssssssssssssssssssssssssssss pizza she will sit right at the window just to catch a glimpse of the delivery guy and with great excitement she opens the door and for a split moment she feels like she is in 7th heaven it is so cool that now when we are going and coming we have noticed that she is waiting for us to come and we have not ever seen her do that and it is just exciting to know she is waiting, yes we feel her love we know she loved us even in the roughest times but it has been very difficult to understand. What she must think of all this stuff and the changes and all the things that she's went through with out help and understanding and support because we did not know what truly had a hold of our momma. We do now and HD all I can say we are stronger and going to fight this disease with every ounce of strength we have as a FAMILY.

HD is not us it has it's own character and we do not accept it and will not let it have it's way against us we are stronger everyday is a new day and we are going to love and encourage and stand beside our family and see them through with great dignity and love.

I am so honored to be her daughter the courage she has shown against this disease and not even know what she was fighting just that she was fighting for her life. We think we know things and see things we don't and what we think is not close to how she must truly feel. I wonder how she has gotten this far almost all alone and to come and find out that it is HD. Thank you momma for giving me the courage to recognize HD in me and for your courages spirit that is alive inside of me to help me fight the good fight against this disease. What we do know is that this disease alters who our loved ones where and little by little steals them away and now that we know how it affects us we are not going to allow this disease to take one more moment from our family. We are forging forward with daily visits to care for her and say we love you mom. Wow we shall never miss another precious moment with our momma.

The Bible says that where to or three gather together and believe it shall be so and I believe what my Father God says. "There'll be no more peas taken from our pea patch, no more."

Huntington's Dance Project

I encourage all to visit the Huntington's Dance Project under My Links or click the link below. My mom has suffered from HD for years and she has the dance but not like what I saw in the reel. It took my breath away so be prepared to see the real life experience of one family's fight against HD.Being able to visualize the affects has opened up a new meaning of HD for me.I have never witnessed someone in full progression of HD and I do realize each person is different. I truly had no idea of what could come in the future for my family. Wow, Chris Furbee when I think of the courage it took for you to want to make this documentary of your mother and your family with HD. I'm in awe, the documentary is so needed and so real it has given me a new insight to my own family's fight and it has empowered me to search out and find all the information and knowledge to know what my family is facing. When I think of my momma having the dance I never knew what could lie ahead for her or any of us with HD.

I say Thank You, Please follow the link and donate to help complete the Huntington's Dance Project for the world to see and bring greater understanding to all.

Just knowing what could lie ahead and being better prepared is better for me because knowledge is empowering and I want to be empowered against this disease called Huntington's.

http://www.huntingtonsdance.org/projects.html

Flowers For ME?

Valentines Day has just begun, as the delivery man started his retreat to the door all I could see was that beautiful arrangement and my heart leaps with excitement has I get to the door to open a beautiful feeling of being loved came over me and a peace that he really does love me. And to top it off he even ordered from the link on my own blog and helped the HD foundation in the fight to find a cure for all of us with HD. Oh my God he didn't yessssssss, he did and that man is mine. I must say that all memories and special moments from this time on are even more special than words can describe for me and my family. I hope and pray that each of you and your family have a blessed Valentines Day.

And my Momma's got a surprise coming also on Mondayyyyyy. I wonder what it could be?

The Awesome Power of Prayer

From the moment this began and I received the positive result of HD. I've struggled to keep my faith up and to see the awesome hand of God upon me. After-wards I tried to stay up, but my human nature is real and being scared and not knowing what lies ahead or in this case what does lie ahead that is the huge difference here the experience I have gone through with my own momma. I feel so sad for the end result that I am trying to face or conclude it now. I can tell you that I cannot begin to understand all the sickness and disease only our father in heaven knows those things. I tried to go to church and continue on like everything was great but the reality check came in and I've struggled for months with this and stayed away from church because I was feeling that why would God want someone with HD teaching his children and being full of uncertainty of my future. God I prayed for him to clear the path of all these things causing me to feel this way and to not let me hurt anyone like I have experienced in the battle with HD. I don't want to be false or weak or misunderstood about this horrific disease the Bible says our ignorance is not a valid excuse to our heavenly father, we are to arm ourselves with wisdom and to seek out knowledge to overcome and conquer just has David did with Goliath he had to go to the river bed and chose those stones and place them in his bag and bless them with prayer and down came Goliath because he let God ordain his life, and David fell many times, but he would always come back through the power of prayer. There has been many saints praying for me and I can tell that the storm clouds or fading and my faith is rising. Tonight I am turning back to the house of the Lord with hope and faith that no matter what lies ahead, Jesus has already been through for me and you. Be encouraged and build your faith with me through our fight against HD.

Thank you Christian Mission the ordained place Jesus has placed me to be, I've felt your prayers and many others. I stand in awe of how God never for sakes you and me in our time of need.

Hallelujah, MY GOD IS AN AWESOME GOD.

Tribute to Jennifer Ireland

It was Jen's Blog that so inspired me to create a place for me to launch my own battle against Huntington's Disease.

From the moment I started reading the first excerpt it was so expressive and filled with love that it moved me deeply and I couldn't think of a greater way for a husband to share his most intimate and difficult time with us. The words literally are so expressive of his Love for his Jen, that you feel as if you have known them personally just as a friend would feel reading the celebrated live and death of Jen and her courageous battle against cancer.

To all your family Jen we say celebrate with your Jesus now and we will dance with you in heaven someday.

Thank you for touching all our lives through the blog.

http://jenniferireland.blogs.com/weblog/

Is It Me or HD?

Recently, I have had to ask myself that question, so much of me is changing and I can't stop it nor can  I grasp hold and hang on and things will get better, no not this time, things will only get worse. Oh my head hurts, legs jerk, drop things all the time, fall for no reason, have bruises and don't know why. I can no longer keep check book, do chores, cook very little, can't finish reading a book and to top it all off I am so confused about all this and what to do. But people don't understand this HD stuff we look normal on the outside but if only they could be on the inside they would see a disease slowly damaging our brain in such a way it's like a thief that comes to kill, steal and destroy us. It does not care who we are and it destroys the person we thought we were to an emotionless shell of a being. I have never experienced so many relationship problems has I have in the past few years and all the time I thought it was them and not me, how wrong I've been and it is still happening it's like HD as no love it's cold and deliberate and it's raging a war against the people who love and care for us. This is not me, :( I don't want to say things to hurt you or make you feel that I don't love you or care for you or to run away from you because I can't reason things out like you. Can't you please understand that HD took over me some time ago and it's not Saundra the one you remember, she is being altered every moment, every breath I breath is taken away slowly by this horrific disease called HD. When I look at my momma I see me and this disease eating away at her and now me. I can't think of anything nice I can say about HD. I am so sad right now and it is testing my faith to the core. I want to overcome I want to win this battle, but the facts are in and it's HD it's genetic and my whole family is at risk. Did you get that a whole family, my family. It just doesn't stop with one it wants us all and it goes on and on until there's no one left. I remember Me, I know deep down who I truly was. Now who am I? This is scary for me, almost like a night mare full of terror. How hard to deal with mom and I and now my child you say at risk, NOOOOOOOOOOO I just can't accept this and my future grand children. Somebody please hit rewind and take me back to the good ole day where I was happy and carefree the place that the memories are made from the real ME. When I was diagnosed with cancer I thought that was the ultimate battle but I was wrong again it's HD the one that wants to kill me in the end. I know this sounds so raw and it is but it is what's churning inside of me. So please bare with me through this horrible disease.

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