Talking to children about Huntington's Disease is a very difficult thing to do. Trying to put Huntington's into words that adults can understand is hard enough but when you have to explain it to children it is heartbreaking because the stakes are so much higher.

While I do not have children I am the proud Aunt of 17 children. Three nephews who are blood related but do not live near me. Seven who are my best friends children who also live far away from me. And then there are my two best friends combined seven kids who live very close to me whom I have helped to raise and babysat almost there entire lives, the children in my life who have been around me the last ten years of my HD journey

My two nephews from the one friend have known about my HD for the last ten years. They were 10 and 6 when we told them, it was one of the hardest things I have even done. The youngest one did not understand most of what I said at the time, but the 10 year old was very upset and asked alot of questions.

I explained it as best as I could and then asked the ten year old if thought he understood. I will never forget what he said to me. He said "it is like your brain is a car and Huntingtons is the thief but instead of stealing it all at once the Huntington's is stealing it one piece at a time." I was amazed by his depth of his understanding.

So these two boys grew up knowing about my HD and always recognized my symptoms for what they were/are. They refered to my tremors as the "shakies". We use to wrestle before the HD, but after that somedays I had the energy to wrestle with them and some days I did not. When I would come over to visit the youngest one would always assume the sumo wrestlers stance and then say "Hey Auntie Kelly B, how's the shakies, wanna wrestle?" I still smile when I picture that.

They both accepted the HD years ago and I never had to be careful of what I did or said when I was around them. They have both grown into fine young men who are both compassionate and understanding towards me. I feel completely comfortable around them now because they really know me and know where things are at. Initially we had worried about telling them, but kids being kids, they simply took the information in and adjusted.

But when it comes to my other friend with the five kids that I have helped to raise and babysat most of their lives, only the oldest child knows about my HD. The younger 4 are blissfully unaware that there is anything wrong with me. They too have grown up around all of my Huntington's symptoms but because they do not know about my HD they blindly accept my symptoms as "Auntie-isms".

Through the years they have seen me drop alot of things, I did not realize how often until one of them commented "Boy you sure drop a lot of stuff don't you Auntie?" Yes I sure do I answered with a smile. My one niece has asked me a handful of times over the years why my hands shake sometimes. I always answered they just do and left it at that. I kept waiting for the but WHY do they shake, but that question was never asked. They just accepted that they do shake sometimes.

We also use to roughhouse a lot but between them growing up and getting bigger and my HD limiting my energy and making my arms tire quickly I usually have to say no when they ask. It breaks my heart when they beg for me to join in because I can not be honest as to why I can not play with them physically anymore.

I have also counted on each of these kids to remember things for me through the years. I did not need to write myself a note if I had any of the kids with me. All of them at age 5 had minds like a steel trap.

For example--Remind Auntie she has groceries in the fridge to take home...I go to leave empty-handed that day and as I have my hand on the doorknob I hear a little voice call out Auntie, don't forget your groceries.

None of them have any idea just how helpful they have all been to me or that they have grown up with a disabled Aunt. They have always taken me at face value. We still do walks on the beach and on their Birthdays I usually take them all for a weiner roast because it is our tradition. I love being their Aunt and it is something I am still good at. I have tried to teach each of them as much as I can while I am still able. Fortunately they are all good listeners because time is ticking past and I have no idea how long I am going to be around.

And now, because my symptoms are becoming a lot more obvious their Mom and I have agreed that it is time to tell them. Personally I would rather drag my body over 10 miles of broken glass then have to hurt their hearts with the truth. But I also know that once they are told they will understand many things that they do not understand now.

My fingers are crossed that each of them will rebound and not be forever burdened with this knowledge. I am very accepting of my HD and my symptoms so I know my attitude towards my HD will greatly influence their attitude towards it. The HD was never a secret because we always knew a time would come when we would tell them. And meanwhile we chose to spare them from that knowledge for as long as possible.

But their not knowing has made it harder on me as I have to be careful of what I say and do and my biggest fear is that I will have an involuntary jerk right in front of them that that they can not miss. Forewarned is better than what could be a shocking reality. I also feel dishonest when I explain away the symptoms they notice.

Telling kids is difficult but I think if you do it in stages it can be absorbed easier in smaller doses. You want to start by opening up the topic for discussion, and then let the kids take the lead by asking you questions. I believe that if a kid is old enough to ask the question then they are old enough to hear the answer. You want to be as honest in your answer as possible but still try to put a positive spin on it.

The hard part of telling kids about the HD is having to answer all of their questions honestly because once you have come out about it you have no choice but to be truthful yet not overwhelm them with too much knowledge. They will ask more questions later on too, once they have had some time to process it.

There is a whole new dimension added when the child being told about the HD is also at-risk. That would be something I would not automatically volunteer as it may not occur to the child that the HD goes further than their parent. But if they do ask if they can get it too then you would have no choice but to answer honestly.

And also be sure to mention that the smartest people in the world are working on a cure for Huntington's as we speak. It will only be a matter of time before there is a cure or promising treatment. You must always leave lots of room for hope because there are a lot of reasons for hope.

There is no set age for telling kids about HD only their parents and family will know when the right time has come. I personally think the younger they are the quicker they adapt, when they grow up the the knowledge it does not come as a shock later on. But I also know that there are many valid reasons to wait until they are older and can understand it better. HD is a hard thing to understand at the best of times.

Telling children about HD is difficult but living around them without their knowing about the HD can be equally difficult