A good friend of mine recently got news that his son "officially" has NF1. Even while he may have known what the results of the genetic testing were going to be, it's hard when news like this becomes a reality.
I understand, and there's not much one can say, when news like this comes their way. All I can really do, is offer support.
I've been down this road. The Dr's disconcerting tone has handed me this news a few times. But I walked away, each time, stronger. My head held a bit higher, because I wasn't going to accept THIS as the end. This wasn't it for us! It's difficult to accept the reality of a life long genetic disorder, but what gets harder, is when to choose to tell your child about their diagnoses.
Every child is different and there is no clear answer for this. But WHEN you tell them, is not as important as HOW you tell them.
Something to keep in mind, when choosing to discuss this, is, are you focusing on the problem...or the solution? We don't want to project our own fears on them. We need to educate, without scaring them.
Another thing to remember, children don't need long ellaborate, exlainations about something that will be apart of them for the rest of their lives. What I have experienced, is, the more simple you are, when explaining an illness to a child, the better.
"Neuro-toesis", Rachel calls her disorder, is not completely understood by her... but she knows she is different...special. We usually discuss NF, as we drive to the doctors. "Where we going today mommy?" My answers usually tell my child the destination and what we expect to happen while we are there. "Today, honey, is the eye Dr. ....Do you remember Dr. Shey? She is going to look at your eyes....make sure everything is ok." I sometimes get questions from her, but usually she just goes with the flow.
Children take their cues from us. If I am uptight, scared, resentful, stressed or angry about NF...then how do I expect my children be? I grew up in a home where my own mother told me, that we had NF because God hated us. I'm not about to inflict the same message on my kids.
Despite what my mother told me...I feel we are blessed, because the NF has made us slow down and appreciate life. It has taken down a road that is scary, but has taught us to hang tight and stay close to God.
So my plan for telling my children about NF, is a lifelong one. One that will be honest, and age appropiate....One that will educate, and make them feel safe. One that won't overwhelm, or judge them.