Saundra Blankenship

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.