I have been approached a few times about having children or not? There is a 50/50 chance that my offspring will inherit the NF2 gene from me. Does this bother me? Of course. Will it stop me? No. My best friend, Dana said it all a few years ago when I went to her crying about it, she said, “Shanna, you can’t not have kids just because of the NF2. If anyone can get them through it, it’s you.” She is right.
I am the “half glass full” girl. I like to think they won’t get it from me, but if they do, we can watch it from birth on. With me, I was the first and had to be diagnosed. Since it was so rare and unheard of, it just took longer to diagnose after I first started showing symptoms. They wouldn’t go through that. I am big on my faith that if God wants me to be a mother, I will be. If they get it, we will cross that bridge when it gets here. If they don’t, it stops there. Nf2 does not skip generations and that is a wonderful thing to know. I will not waste my time having testing done to find out if the child has or doesn’t have the NF2 gene. Two reasons, it is risky to the pregnancy and totally pointless in my book. I am not going to abort a fetus just because of a gene! That is extreme and should only be used for extreme circumstances.
Having children is a blessing, not a trial and error process, or a risk analysis. I may or may not be able to conceive and it would have nothing to do with NF2 because I do know others with NF2 who have beautiful, healthy children. So, I don’t know. I've never tried. My point to others is that I could have a child without NF2 and with something totally different. Would I give them up or trade them? NO! They would be mine, my gift from God. Every child is precious and every one has risks, but does that stop us from having a family? Again, no. I just don’t see the relevance NF2 would have over that and never will. Yes it can suck totally, but I am glad I am here and I wouldn’t change my life. I very thankful for what I do have and even the person NF2 has helped me to become. I would be a lot different, had I not of had this. It is what I have, not who I am.
I recently read the men with NF2 can reduce the chance of passing it on through invertro. I was asked about an egg donor and I am like, uh…… No! Lol Then they wouldn’t be my children. NF2 I know how to handle. Something else could spark from a different egg and be a whole new ballgame. I’ll take my chances with my own eggs. In God’s time, not mine.
I don’t want to focus on the future. I don’t want to rush getting married again. I don’t want to rush having children. Yes I am 29 years old, but I have my whole life ahead of me and I will focus on that when the time is right. That time is not right now. This is my time, since I missed so much when I was younger. I am very happy right now. I am healthy right now. That is what I am focusing on. I’ve said it before and I will say it again, one day at the time is all I can do.
Shanna if you wanted to do in-vitro you could use your own eggs. They would harvest your eggs with the sperm, create embryos, and then only implant the ones without NF2. Still your children. The issue would be the necessary hormone shots for harvesting. I have 2 kids, 1 with and 1 without NF2, I agree with you, life is always precious.
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