My daughter wrote this for an interview. I felt it should be shared...


Growing up my life was perfect. I lived with my Mom, Dad, and little sister. We had a cozy little house in the heart of town, and a big family with an unconditional love for one another. As I grew older I watched some of my friend's parents get divorced and even some parent's pass away. I prayed each night that my family would always stay together, just as perfect as we had been. When I was about eight years old, however, my perfect life began to change.

When you are eight years old, you don't know any better. You see things for what they are and can not yet understand why certain things have to happen. What I had begun to notice was something about my Mom. I couldn't quite put my finger on it but she was not the same. She had trouble keeping her balance and she was constantly moving around. Her speech was slowly becoming a task difficult to conquer. At such a young age I could not comprehend how serious the matter was becoming, until one night when I overheard my father talking to her. He told her that he was taking her driver's license away because she was no longer well enough to drive my sister or I around. At that moment I knew that something was really wrong.

That night I learned what was slowly taking my mother away from me; Huntington's disease. I learned that this disease runs in my family. My grandfather had suffered from it and now my mom and my two aunts were showing signs of the illness as well. Huntington's disease is a genetic disorder which makes physical activities, such as balancing and speaking, very difficult. Symptoms generally start to develop in late 20's, early 30's, and worsen over time. It is now 8 years later. My mom can not really communicate with me, only simple words like yes or no. She needs help with daily tasks such as eating and drinking, and she needs the support of someone to help her move around our house. My Grandmother has moved in with us so she can be home with my Mother all day while my Dad is at work and my sister and I are at school.

Although it is difficult having an ill parent, I believe my Mother's sickness has made a very positive impact on my life. I do not feel sorry for myself or my family. Rather than hang my head for the poor fate that has occurred, I smile because my mother is right here with me and millions of people would give anything to still have their mother by their side. I am fortunate enough to see her and be with her every day, and although her life is not so easy, she's watching my sister and I grow, which I'm sure is her only wish.

My strength as a person has come along so far since I learned about my mother's sickness. I am now a leader. I make sure I'm available to be at home with my mom when my grandmother has plans. I help my dad with anything I can and try to be the best role model for my younger sister. I give her my full support as her sister and sometimes even help her as I believe my mother would like to. My strength carries on outside of my household as well. This year I was named a captain of the Varsity cheerleading team, something that I have dreamed about since the day I went to my first cheer practice. I help to guide 29 other girls on my team who all have their own hardships to face. It is a big commitment, it can get tough, and I know for sure that without the strength I've gotten from my mother, I wouldn't be able to support myself or any of my teammates through it.

I am the brave person I am today because of my mom. I always try my hardest to succeed. I help give strength to my family and friends. I remain positive when negative situations are thrown my way. It is not just myself I'm dedicated to being strong for. I am strong for my mother, father, sister, my family, friends, and teammates. Despite the unexpected change that occurred in my life 8 years ago, I still consider my family to be the perfect family for me.



Edited 1 time(s). Last edit at 07/17/2009 03:31PM by Jamie.

Thanks, that was a very inspiring post. I'm so glad to know that someone sees the positive in all this, I believe that your mom is very proud of you. I have two little boys who I dedicate myself to as their at-home mom and I'm also at risk, so this post gives me great inspiration, and congratulations on making captain, that is a great accomplishment, you seem like you will make a great role model for other young women. Your Mom did such a great job raising you!

oops Sorry RJ,
I should have clarified that it is (MY) daughters perspective.
It was her answer to an interview question. She is amazing!

Jamie(her dad)



Edited 1 time(s). Last edit at 07/17/2009 03:33PM by Jamie.

Hi Jamie,

I am so impressed at your maturity for a 16 year old. How lucky for your family they have you. Even though they may get caught up in the day to day tasks of taking care of your mother and may not remember to tell you enough how grateful they are for you and how important you are to them, always know that they cherish you. Your little sister is so lucky to have you in her life. As things get rougher she is going to need your strength and love.

Good for you.
Joan

Well then Jamie, congratulations on such a wonderful daughter. I don't know why things happen the way they do, but for some reason you were blessed with her.

okay, Jamie, you should also be proud because you and her mom have obviously done a great job. You are blessed!

Jamie, your daughter will do well in life with an attitude like that. I honestly think a positive attitude can make or break a life. Thanks for posting.

Patty

Jamie, thank you so much for sharing your daughter's essay with us.

Great optimism--not letting HD control her life.

Thank you Jamie, that was really really beautiful

Jamie-

What a beautiful compassionate daughter and human being you are.

Your family has to be so proud of you. You will go extremely far in life with your attitude.

Your post was extremely inspirational as well.

Life is beautiful and some is good and some not so good. We all deal with something and the way we chose to live our lives determines how rich they will or will not be. My own thought is sure I wish HD was not in our family but there is worse and it can be worse. I also feel those with HD are first persons and persons who live a life just as we all do. They can all do anything anyone else can do. They can live awesome lives as anyone can.

People with HD have an illness as many do, whether it be HD or someone thing else. That is how the cards have fallen and we must make the most of this one life we have to live on earth before we leave this earth.

All people need hope and there are so many avenues being looked at as far as medications/cures for HD.

My husband has HD. Thus, my daughter who has two beautiful granddaughters is at risk as well. She is very much like you and her daughters have one of the best lives a child can have due to her and her husband. They give the girls all that is important and spend much time with them giving them new experiences.

Sadly, they have a neighbor without HD and the parents have no time for their children. Those children go over to my daughters much just to have family time they see. They have even told my daughter and her husband how they wish they were part of their family. My daughter and her husband try to inlcude these children in as much as they can and let them know they can make a difference and inspire them as well.

Jamie, congratulations on being head of Cheerleading. That is not easy either.

Anyway, I had to post after reading your post. You are an awesome individual who is very compassionate and in tune with life and will go far.

God Bless you and your family.

Sharon

Your daughter's essay has really helped me tonight. I am new to this and struggling. My husband is at risk and I believe he may showing the first signs of Huntington's. We are 26 years old and I am currently pregnant with our second child. If he does carry the gene I hope our children will be as positive as your daughter.

Your daughter's essay has really helped me tonight. I am new to this and struggling. My husband is at risk and I believe he may showing the first signs of Huntington's. We are 26 years old and I am currently pregnant with our second child. If he does carry the gene I hope our children will be as positive as your daughter.

WOW! Lately I have been really wondering about the future, what it holds for me and my family. And I have been pondering the thoughts of, "would my children be better off at some point as the symptoms get worse if I were not living in the home with them. Then I read this, how beautiful!! I hope my kids can have the strength and understanding that your daughter has Jamie!! Please tell her how much her words have soothed my soul and at least put off my pondering for now!!!!

Thanks for sharing your daughters insight . db

Nice message Jamie, proud dad no doubt.

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