InstantForum.NET v4.1.4Lymphangiomatosis & Gorham's Disease Alliance Forumhttp://www.lgdalliance.org/forums/forum@lgdalliance.orgMon, 05 Jan 2009 23:57:47 GMT20http://www.lgdalliance.org/forums/Topic79-20-1.aspxI am so thankful for this forum as it is so comforting to read that other parents are dealing with the same issues as we are. We were told no skiing/snowboarding - a month before our daughter was diagnosed she mastered a snowboard (our family really enjoys skiing together) and this news really brought her down. I've been considering still letting her snowboard this next winter but was feeling I might be an irresponsible parent. Your messages encourage me to listen to my heart and let her live as full a life as possible, certainly with caution but activities that fill her life with joy. Thank you all for your sharing.Mon, 16 Jun 2008 12:17:19 GMTjdahlsonhttp://www.lgdalliance.org/forums/Topic79-20-1.aspxThanks for the good advice. Hunter has not played soccer or baseball for the last two years (doctor's orders). Now Paul and I have decided if he is still improving like he has been we will allow him to play some group sports. Right now it seems he is doing everything he possibly can so it's time for us to ease up on him. I don't want him to feel like he is living in a bubble. It is scary to let go some and we did make it through his overnight stay at church camp. It is still amazing how well we are doing considering how our year started out. He deserves to at least try to do things in moderation!Fri, 13 Jun 2008 07:45:56 GMTHuntsmomhttp://www.lgdalliance.org/forums/Topic79-20-1.aspxI agree, let your children set the limits. Only they know how they are feeling and what they feel they are capable of doing. Sure it may mean an extra trip to the hospital or trip to the doctors office, but they have enough to deal with. Letting go is very very scary. From someone who lost their daughter way too soon, I can tell you that Robin set the limits. She knew she was one in a billion and she knew she wanted to experience all that she could in the short time she was here. Have faith, pray and remember their life is scary enough. Let them have fun.BlessedmomThu, 12 Jun 2008 14:41:09 GMTblessedmomhttp://www.lgdalliance.org/forums/Topic79-20-1.aspxHappy Summer! I hope that you all are having a great summer! Growing up with lymphangiomatosis was hard as a kid because there were always things things that I wanted to do that I wasn't "allowed" to do - ride a bike, run around, play sports, do gymnastics, skateboard, climb trees, the list went on and on. Fortunately, my parents gave me the freedom to do many of these things in moderation and under supervision. Being able to made me feel normal and was so important. Of course sometime the result may be an injury - for me it was a broken leg (falling off of a jungle gym) - but looking back it was well worth it.Wed, 11 Jun 2008 13:27:49 GMTJayna