So, today was my annual eye doctor visit. For most of the world this is EASY PEASY! If you are living “at risk” for Huntington’s Disease this may mean something entirely different. Most people in this world go to the Optometrist for contacts or eyeglasses. Eye doctor visits are normally not much of a dreaded event. If you are “at risk” for HD you know that they say many doctors can look at your eyes and they know whether you have the disease or not. This is enough to send me over my daily allotment of anxiety for the entire week.
From my personal research I know that eye movements are abnormal in most HD patients and can be one of the earliest symptoms for the “at risk” category. I know that REM (Rapid Eye Movement) can be abnormal. I know that vertical and horizontal saccades are slow. A saccade is a fast movement of the eye. Saccades are quick, simultaneous movements of both eyes in the same direction. Vertical is up and down and horizontal is side to side. So, with this information I always ask the doctor if he sees anything abnormal from his standpoint. So far, I have never been told that I do.
I go to the eye doctor because in the past few years my “up close” vision keeps getting blurrier and blurrier. I have to wear eyeglasses when reading, working on the computer, or wanting to see anything up close. I have also noticed lately that my “far away” vision has been getting a bit worse. My “far away” vision has always been spot on. This whole eye thing drives me crazy in general because I have never needed glasses and always had spot-on vision. So, the fact I have to go the eye doctor at all just drives me batty!
I know, I know. Let’s get me back to the fact that I said I went to the eye doctor today. As I went back all I knew was that I needed glasses but more than that I wanted her to do the test to look at my eye movements. How strange is this? I should’ve been more focused on picking out my new glasses but I was more focused on getting called back and talking to her about my other “concern.” She was very nice. As soon as I mentioned the Huntington’s Disease she wanted to tell me that she rarely gets people in with it or at risk for it. She said she has a cousin, who is not blood-related, that is currently battling HD. Needless to say, we hit it off quickly. I told her what I knew about the saccades being slow and she tested me three different times. She wanted to assure me that there are machines that can pick up the very beginnings of this but she could definitely tell me if she saw a “gross” eye movement problem. I followed her pen left, up, right, down, left, right, up, down. We repeated it. Then we repeated it again. She looked at me and said she saw nothing at this time. Whew, bullet dodged this year! A small HD victory in my mind. Yes! She then said let’s talk about your prescription. Oh, I almost forgot I came here for glasses!
So, all in all it was a pretty good day. Only one more year until eye doctor anxiety repeats itself!!
Today started off like any other day and then WHAM! I found myself in a boxing match and my opponent was “guilt.” I don’t like guilt because he always defeats me. Mom 0 Guilt 15,042
Today started out like most normal mornings. I got out of bed at 5:00 AM to get DD2 and DS2 up for school. I was making waffles for breakfast because DS2 had a long day of school-wide testing today. I know he loves waffles and I wanted him to get off on the right foot. Well….
DS2 has never dealt with change very well. He is ADD/w anxiety and struggles with change of any kind. I have been telling him that today would be the day he would have to start taking the bus to Grandma’s in the afternoon. I have been picking him up this entire school year since we don’t live in the area for that particular school. He has never been a fan of the bus but he hasn’t seemed to squawk about it too much. After breakfast I reminded him to get on the bus and gave him a note for his teacher so she would help remind him in case he forgot. That is when the morning turned interesting. He got upset and kept telling me how much he hated the bus and kept asking, “Why are you doing this to me?” This continued all the way to school. When he got out of the car he put on his backpack and just walked into the building with his head down. (He always waves and says goodbye normally.) The guilt just smashed me right in the face. I know this is a very reasonable request. I know I am not abusing this child by making him ride the bus. Why does it bother me so much? Why do I feel so bad?
After coming home and thinking about it I realized that guilt is such a normal parenting emotion. Guilt can be the result of many things. When we don’t feel like we had enough time with a child, raise our voice or tell our children “No.” That is just the tip of the iceberg. Kid’s know how to push our guilt triggers. You have to be strong when you are a parent and not let them see you crumble. My brain knows that I am doing the right thing for the kids but sometimes my heart doesn’t. When they are sad or upset you just want to take it away and make everything good. Unfortunately I know the world doesn’t work this way and kids have to learn to do things they don’t want to do. I know what I am doing is in their best interest even if they don’t. Right? 😉
Today really got me thinking. A normal parent is able to stop there and not think much more about guilt, but for me it is a whole different ballgame. If something like what happened this morning with DS2 can cause me this much guilt, how will I feel if I have HD and pass this gene on to my kids? Now guilt seems to take on a whole new meaning. What went from a simple everyday parenting guilt trip has given me a mountain instead of a hill to conquer. I have thought this way for years whenever I feel the slightest guilty over something so small. Guilt could be a terrible issue in my future.
Since I have told you a little about me and I have explained HD and explained how it affects my family, I thought I would take some time to tell you about my personal family.
I am happily married with a very supportive husband. For all future posts I will refer to him as DH (Dear Hubby). We have an amazing blended family. We both were previously married and we both have a child from our previous marriages. From my first marriage when I was very young I had my first child. She is almost 21 and just gave me my first granddaughter. I will call her DD1 for (Dear Daughter 1). From my husbands first marriage I have a wonderful step-son who is also almost 21. He is in the Air Force and we had custody of him for most of his upbringing. He is the only one of my children who doesn’t have to worry about HD affecting him since he is not my “biological” child. I will call him DS1 for (Dear Son 1). DH and I have been together since 1996 and have two children together. Our third child is our daughter. She is a freshman in high school and a great kid with a wonderful personality. I will call her DD2 (Dear Daughter 2). Our last child is our baby (well not really a baby). He is our son who is in middle school. He is 13 and just another great kid. I will call him DS2 (Dear Son 2). Oh and last but not least we have two great dogs! We have a miniature schnauzer who I will call “Maddie” and a Beagle Harrier who I will call “Domino”.
As far as family goes I feel like I hit the “family lottery!” I am very blessed. The support I get from DH is absolutely amazing. He came into my life when my Dad was into the beginning stages of HD. He learned along the way and he never chose to walk away. I have had so many breakdowns over the years where I have just told him he should leave. He never does. I remember when I knew he was meant for me. I was having a “mental breakdown” so to speak. I had been taking care of my Dad (I used to live with my parents to help take care of him) and I just lost it. I was looking at my “maybe future.” I remember crying to my husband and saying, “You aren’t going to want to go places with me dancing all around and not making sense.” (not that my Dad was ever a burden to me) I remember DH looking into my eyes and saying “Yes I am going to be with you. Do you want to know what I am going to do when everyone is looking at you? I am going to dance right along with you forever!” That sealed the deal. I knew then he was in this for the long haul. This wasn’t just about me. We have 3 children (2 of them his) also threatened by this disease if it affects me. This became a crusade for us. That was the last time I told him he could leave. I know anything can happen but I don’t think he will ever walk away from me. For that reason right there I am so very blessed. There are so many people who don’t have that lifeline. I am thankful everyday for DH. He gets me through the bad days and is right there with me on all of the good days.🙂
My children are the blood in my veins. They are my pulse. They are the reason I get up out of my bed everyday. I can’t explain how much I love these four amazing creatures I was blessed with. They also lived and watched my Dad deteriorate for quite a few years. They watched their “Papaw” go from a man they could speak to into a man who couldn’t speak a word. They struggled to still understand him most days. My dad could be in the worst moods ever and when one of his grandchildren walked in his face would brighten. He lived for his grandchildren. I wish they would have all known him “before HD” but I am thankful that the man they knew was still a very sweet and loving man to them. I don’t think they will ever really know how much they meant to him. I pray that they don’t ever have to be a caregiver to me. It isn’t so much for the fact it means I am free of the disease as it means they won’t ever have to see what I had to see with my Dad. Not to mention, it would mean they were free of the disease. I always pray, “God please give me one thing. Please don’t allow HD to progress to my kids. Please.” I want them to live an HD free life. I think that is another reason I don’t want to test. I don’t want them living my daily life of, “Do I or Don’t I?” I have thought of testing and if it is positive not telling them but that would be very hard to do I would think. It is just something I change my mind on all the time. I just want to protect them from everything. It’s just the mom in me.
Then there is my new very precious addition. I will call her GD1 (granddaughter 1). She is only a month old and she has turned my world upside down with joy. DD1 and her boyfriend live together in an apartment with GD1. They live across the city but I still get to see her about 1 or 2 times per week. This is beyond perfect for me. I am trying to learn my boundaries. I want to be helpful but I don’t want to be overbearing and telling them they aren’t doing things right. Parenting is a learning experience and I think DD1 and her boyfriend are doing a fabulous job for being so young! Grandchildren are truly an absolute gift.
If there is one thing I have learned in my over 23 years of marriage and parenting it is this: No one is a perfect spouse. No one is a perfect parent. We all make decisions in life and sometimes they are great and sometimes they are not-so-great. Take the great decisions and repeat them with consistency. Take the not-so-great decisions and learn from them. Turn them into great decisions. Life is a learning experience everyday.
Well, I just wanted to take a moment to explain a bit more in-depth about my wonderful family and support system. Some days are wonderful and some days are bad. Some days are pull your hair out nutty! Every day is a blessing and I don’t take these days for granted.
I know the disease has been in my family far longer than I can trace back. For my tracing purposes I can go as far back as my great-grandmother on my paternal side. She had HD and had 4 children, 2 boys and 2 girls. One of the girls had HD (late onset in her eighties) and one of the boys (my grandfather). My other great-aunt lived a normal life and my great-uncle died young of a heart attack. My grandfather developed the disease and died when I was about 17 years old. I wasn’t around him much growing up. My dad was never very close to my Grandfather due to a violent upbringing and alcohol abuse. Looking back I think my dad always wondered how much of it was truly my grandfather and how much of it was HD. I did go to my grandfather’s funeral and I remember that being very hard for my dad. My grandmother and grandfather had 4 living children. Out of those four (3 boys and 1 girl) only one was lucky enough to escape the disease. My dad died this past July (7/14/11) and my Aunt is currently in Hospice and not doing well. My affected uncle is currently incarcerated. I was never close with him but I have to wonder if some of his bad choice weren’t due to HD. My uncle who was lucky enough to escape this horrible disease lives a normal life. Out of my dad and his siblings there are a few of us “at risk” kiddos. I have cousins who are all living the same life I am living. We talk when we can and hope we all escape the evil future we are threatened with. Then there is my sister (my lifeline in this world). We are in this boat together. Paddling, paddling, paddling….
This is just my families story. I didn’t want to make anyone dizzy reading this and NO there is not a test ;) All HD family stories are different and this is just mine.
Hello to the internet world! I am so happy you found me! Let me introduce myself. My name is Kim. I am a 39 (and holding dearly) year-old married woman. I have four beautiful kids and was blessed with my first granddaughter about 3 weeks ago. I am living a life at-risk for Huntington’s Disease. I am sure some of you are wondering what in the world this Huntington’s Disease is and some of you know EXACTLY the demon I am talking about. Life is a daily struggle to live at-risk for this disease. Many people judge you for not being tested and others judge you for being tested. I have decided to live my life without testing at this time. I do struggle each day with wondering if every little thing is an “early symptom.” For example, I will be laying in bed at night and get a knee jerk, or my body will jerk, or during the day my memory will slip. Is this Huntington’s or is this a normal life? Everyday is like this. Some days are better than others. It feels like being between a rock and a hard place. By not testing for the gene I live a life with an unforeseen and hard to plan future. By testing I could get the fantastic result of “negative” or I find out my life will also be taken short by this evil disease. By finding out I am positive it also now puts my children living the “at-risk” life I am now living. I guess I’m not ready to put them where I am right now. It can be a very lonely and scary life that so few understand. On the other hand I realize I need to see each day as a blessing and try and live life to maximum enjoyment. Some days are much easier than others. This is a personal journal I guess you would say. A personal journal of my ups, downs, changes, etc. I will forewarn you if you are looking for a grammar specialist you have stumbled upon the wrong blog. I have never been good at knowing where the comma’s go or wondering if I should’ve started a new paragraph. If you want to read about the struggles of living with HD in your life you are at the right place. I will talk about my husband, my children and my new precious granddaughter. I will talk a lot about my parents and my amazing sister. I will talk about my extended family. I will talk about trying to lose weight and my passion for simplifying my life so that I can spend more time with my family. I will write about my hobbies and my friends. I have a wonderful life and I consider myself to be very blessed. I also live a life with a huge question mark. Every decision I make in life always seems to come back to Do I have Huntington’s Disease?
I hope you enjoy reading my blog and look forward to getting to know new people. If you are new to Huntington’s Disease I will be posting more soon about the disease itself. I just wanted this first post to be a look inside my world🙂