I was talking to someone (I won't use the person's name) about this just today; and although I may have talked about this before, still it's an issue that comes up time and again. So let's indeed muse about it again. The issue is this: say you're an adult with Moebius. You're in a very serious relationship with someone else, or married. You want to have children. Question: but won't your children have Moebius?
Here's my perspective, based on what I know about it. Full disclosure: obviously I have Moebius Syndrome. So does my wife, Lisa. We have produced two children. Neither one of them has Moebius Syndrome at all.
Okay, so, that...and the fact that I know others with Moebius, who have also had children, and their experiences...tells me this: will your children have Moebius? Well, you certainly need not think that there's a guarantee that they will. I even think it's fair to believe that it's likely that they will NOT have it! Again, this is based on what I know.
Now, does that mean that it's guaranteed that your children won't have Moebius? No. We can't go that far. Remember, Moebius affects everyone who has it a bit differently. So, in every case--if you have Moebius and you're thinking of having kids, you should talk to your doctor. You should talk to your ob-gyn. You should get genetic counseling--my wife sought that out and it was a good thing to do. You should get all the information you can.
But must you be afraid that your child will have Moebius? I'm convinced the answer is no. And I do not believe you should shy away from having children because of that fear. You should just get all the information you can. And of course, you should think of it this way, too: suppose your child DID have Moebius? Well, two things then: first of all, those of us with Moebius know--a life with Moebius is still most definitely a life with living, and never forget that. Second: who then would be best prepared to teach your Moebius child about life, and to help him or her through it and make that life the best it could be?
Well--you, the parent with Moebius. Because nobody knows more about it than you, right?
Live your life to the fullest.
"We have nothing to fear, but fear itself."--Franklin D. Roosevelt
great musing, Kevin. Our geneticist told us that should ozzie choose to have children someday, that the odds of him having a child with Moebius would be the same as it was for me, 2-20:1,000,000. Just luck of the draw, i suppose. Also, your kids are adorable!!! Can't wait to see how much they've grown next summer!
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