WIFE + MOM +TEACHER
Erika Eiger is a winner. Not only because she won a surprise kitchen update from Charlotte, NC organization, Save Our Kitchen- which updates kitchens for deserving families with help from local business, community sponsors and donations. But more so because she is dealing daily with thoughts about her future as the wife of a husband battling with Huntington’s Disease (HD), a hereditary brain disorder affecting people all over the world, and the potential of the gene being passed on to her children. She is an example of why living today is so important when tomorrow is not promised. She is determined to live now no matter what lies ahead.
Tell us about your family?
My husband Jaya and I will be married 14 years this July 22nd. We have 2 children. Joey is 12 years and going into 8th grade. Olivia is 8 years old and going into 3rd grade. We are originally from Rochester, NY but relocated to Charlotte NC 10 years ago due to the fact that I couldn’t get a teaching job. I am a Charlotte Mecklenburg third grade teacher.
Tell us about where you were in your life when the diagnosis came?
Were there symptoms that were already affecting your day to day life with your husband beforehand?
Jaya and I didn’t even notice any signs of symptoms. We were in our early 30’s and our daughter, Olivia was just turning 1. My mother and aunt came to visit us from Rochester for Olivia’s birthday, when they noticed him showing signs of movement. He moved like he was having spasms. They also noticed that Jaya didn’t really know what to do with normal day to day things and that I was always telling him what to do. For example: put dishes in dishwasher, time to start cooking, give the kids a bath. I just assumed he was always so used to me telling him what to do. Until they pointed it out to me, I didn’t see it. By our mid thirties, we had seen numerous doctors and had tried different types of medications. It wasn’t until Dr. Rachel Dolhun, a Neurologist who just graduated came up with idea of possible Huntington ’s Disease.
We had no prior knowledge of the disease. His parents divorced at a young age and didn’t have much contact with his father. We decided to get tested because that’s the only way to find out. We had a confirmed diagnosis on June 13, 2011 at age 38.
I know that you are a teacher. How long have you been a teacher? Did your experience as a teacher help in any way in not only understanding HD but also explaining it to your children?
I have been teaching for 10 years in NC. HD is a confusing disease. For us there was no background knowledge to it. After I let the devastating news sink in, I began to get on the internet and do as much research as I could. Of course, I found out that this is a horrible disease: a death sentence. I still have a hard time understanding it. There is no way to pinpoint which stage he might be in to determine life expectancy.
We just began to start explaining it to Joey. He was the one who knew things were now different with Daddy. He grew up with his father doing everything with him, so Joey has been having a difficult time emotionally with it. The hardest part for us is the 50% chance that the children will inherit it. There is a very child friendly website http://en.hdyo.org/ that gives children ideas on how to still spend quality time with their loved one.
My experience with being a teacher has helped me to communicate to the kids that to live their life to the fullest. I want them to do their best in school and get a great education, go to college and have a career that they love. No one knows for sure what the future holds, but we can’t dwell on it.
How do you take time away from it all and take care of you?
I am very thankful and lucky to have such wonderful family and friends near me. I spend quality time with them. They are there for me when I need to talk. Last year I did go on a girls cruise for my 40th birthday. I hope to do that again soon.
The kids, my mother, and I are going to Universal Studios in Florida in a few weeks for vacation. I try to do some sort of vacation every year even if it’s a small one.
What core words would you use to describe yourself before the diagnosis? After?
Before: strong willed, determined, independent
After: dependent on my support system for help, hard working to make sure we have enough to get by.
What is the hardest thing, besides not knowing how things will progress, about dealing with HD? Is there anything positive you have been able to pull from such a delibilitating experience that helps you keep going?
The dealing of everyday life. I practically have another child I am raising. I no longer have the husband partner who would help and share the household responsibilities. I have a 42 year old who needs to be reminded to take a shower, watch the children in the shower, shut the refrigerator, lock the doors, and clean up after himself.
Fighting to find not necessarily a cure, but at least something to slow down the progression of the disease. Trying to spend more quality time as a family and not take each other for granted anymore because life is too short.
Do you participate in any support resources, either in person or online? Do you have a strong family and friend support system?
I do participate in the HD Reach Charlotte Support Group. We meet once a month. My mother moved here 2 years ago to help me with the kids. She has been a lifesaver. Since Jaya is no longer able to drive, my mom will usually help pick up the kids from school or take them to extracurricular activities. She even will cook a meal or two weekly. My in-laws also live here and do the doctor appointments for Jaya. This way I do not have to take off from work. I have fantastic cousins and friends that live here and always know when I need them for myself or just to take the kids out and give me a moment.
NUGGET QUESTION: What advice would you give families dealing with HD who are recently diagnosed about maintaining balance and dealing even when they lose their footing?
I would tell families that they are not alone in this situation. Look for support groups in your area. People are always willing to help and take the help they offer. You can’t do it alone. Also to know that life isn’t over. Just spend quality time with the family and don’t give up. Also make sure you see a lawyer to put all your financials in order before it’s too late.
I know you worry about the potential of the gene being passed on to your children. How do you stay positive in the face of adversity so that your children are encouraged to continue to live and not succomb to worry about what could happen down the line?
I worry every day of my life that my two precious children will not have to go through this. However, they are still young and have a whole life ahead of them. I encourage them that getting an education is important to be able to go to college and have a career is what they need to focus on. We need to live for the now. We don’t know the future and hopefully God will have an amazing plan for them.
Do you have any hobbies?
Reading and going to the movies
Where do you or would you go for fun to distress with your family?
I absolutely love the beach. We have been to Myrtle Beach many times. Just going for ice cream is enjoyable and staying home playing board games.
What is one misconception about HD you want people to understand?
That it’s ok to still talk to the person, invite them out. It may take them longer to think and respond, but they will. Be patient and don’t be embarrassed by their movements. People with HD still want to have fun and be loved.
What brings your joy?
Seeing Jaya and the kids have fun by doing something he still can do to be an active participant in the family.
What has been your greatest lesson in it all?
Not to take my family for granted anymore because life is too short.
Erika Aiger is a third grade teacher in Charlotte, NC.
Learn more about HD at http://www.hdsa.org/new-to-hd-1/new-to-hd.html. Lend your support to Save Our Kitchen by visiting them online via their website http://www.saveourkitchen.comand/or Facebook or email at email@example.com
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