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What approaches have other parents used when they felt it was the right time to tell their children about VHL disease? What age do you think is appropriate for a child to know about their parent's medical condition and the child's condition, if the child is at risk for VHL?
Our boys were 4 and 7 when their dad was diagnosed. We told them very little at that age. As they became older, with each surgery they would ask more questions. I'd answer the questions, but not go any further. Once our oldest studied genetics in 6th grade he asked oneday if he could inherit VHL. We were honest with him and decided that was a good time to go ahead with the DNA test. I have found that kids will ask questions and letting their questions guide how much to tell them has worked great for us. Robin Kadlecek
To help you when you get to this point, don't forget to get a copy of the VHL Handbook: Kids' Edition!
See http://vhl.org/vhlsales/kidsbook.php
Best wishes,
Joyce
Robin,
You handled the VHL questions with your boys perfectly. You must be an educator. If you are not, you should have been! And so Ballroom Dancer, your children will help you know when the time is right. Answer their questions honestly, but remember to answer only their questions. Do not go into great detail when a simple answer is all they are seeking.
Here is my 2 cents on the subject: Please do not lie to your kids. My Mom died after 2 surgeries for a brain tumor at age 36. I was 9 years old. My Dad did the best he could (it was the dark ages then) and they did not tell us the truth about her illness (during and after). This was far more damaging to me personally, than her illness was.
When kids can see what is going on, and their parents say something completely different is happening, children learn not to trust their own instincts. That is very damaging.
Best of Health to us all!
Tina
Tina~
I have to agree. My mother died at age 29 from an undiagnosed brain tumor. I was 7 yrs. old, and my sister was 5. No one told us the truth of how she died. We were never allowed to ask questions, and we were not able to attend the funeral. It was like, "your mother died, end of story." So i agree, always tell your children the truth. My girls are ages 8 and 5, so i am not sure when they will start asking questions..but the time will come sooner or later:)
Both of my girls are aware of "tumors"; their Papa (my Dad) recently died of VHL tumors, I have had surgeries to remove tumors, and I go to Maryland twice a year to check tumors. They have not asked specifics, they are 3 and 5. Both have VHL and both get tests done, but we've just incorporated it into our lifestyle. The girls don't know any different. I expect at some point they will start to make some connections and ask me more about VHL, if they have it, will they die like Papa, etc. I am always honest with them, and try to give them age appropriate information. I want them to enjoy their childhood and not live in fear, but I will not keep them in the dark when they ask questions. I try very hard to be like my Dad was: take it one day at a time and be grateful for all the blessings in my life, and deal with VHL when necessary. I am trying to pass this along to my daughters.
Also, get a copy of the VHL Children's Handbook. It is an excellent book and I fully intend to use it with my kids as they ask more specific questions and need age appropriate answers.
Hope this helps. VHL is a difficult issue, but to be honest I think that I can teach my girls to live with it and still enjoy life.
Just something to keep in mind, my mother, who had VHL lived with us until she passed away. My children were 6 and 4 at the time when she died. (She lived with us for three years.) I noticed my daughter (6) kept her distance from my mom, but figured it was because my mom was not a warm and fuzzy person. Shortly after Mom's death I underwent a partial nephrectomy. When I sat down to tell my daughter I had the same disease as her grandmother, she recoiled with a look of panic. "I wanted to tell you, Mom, not to get too close to her or you would get it too." I hadn't considered she lived in a world of germs and handwashing. Even though we don't have to tell them everything, sometimes we do need to reassure young children they won't "catch" VHL from someone they love.
This is one of the topics covered in the Kids' Handbook.
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