I guess I never really realized the importance of support groups until we REALLY needed one. Sure, I would have been a member of on-line mothering forums discussing pregnancy, sharing helpful tips and tricks, but the support groups became very important once we found out about Fiona's potential condition.
We wanted to connect with other people who have gone through the same experience, who know more than we do and also for Fiona and the other girls to be able to meet with other people with restricted growth conditions.
I now facebook, e-mail, chat with friends I have made through these forums, read their blogs. It has a normalizing effect, it's not only us, and actually it is OK and they can be happy and lead normal lives.
Petite yet fierce - Ramblings of a pathologically information hungry mother about hypochondroplasia, about rearing 3 girls in a foreign country and about all the random thoughts my sleep deprived and over-stimulated brain can come up with.
I'm glad you found my blog and posted! You will find that I don't post a lot of hypo things now, but I hope that you find that reassuring. Our son Evan wasn't diagnosed until he was 2 1/2. It was normal life before and things continue as normal now. He really is a healthy 6 year old boy--who just hiked and rock climbed for 11 miles within 2 days! He tires his best to keep up and does. And he makes the journey even more enjoyable. You can find me on Facebook, too as Andrea Chiapelli Kunz.
ReplyDeleteHi Andrea,
ReplyDeleteThank you, that is very reassuring indeed and it seems to be the way for most hypo parents, and I guess no news is good news...