From the article: First Five Things to Do After Your Child Is Diagnosed with OI
If you're the parent of a child with osteogenesis imperfecta, chances are you've gotten quite an education since you first heard that diagnosis. What would you say today to parents who are just getting the news? Tell them about that book that explained everything, that website full of resources, that e-mail group you still lean on, that experience with your child that made you see things differently. Those of us who have been there have important gifts to give those who have not yet done that. Offer your words of wisdom and experience here. Tell Your Tips
Mom of 2 with OI, grandmom of 2 with OI
- Don't panic. These kids live full lives. They are strong-willed, can smile and bounce back from the worst pain. Learn all you can, what pain meds really work, how to splint, how to deal with schools and family. Enlist help from friends, family, community. Don't be a martyr. Hold your baby, he/she needs your touch to know it is OK. Don't let anyone influence you into giving it up, some people in the community may try and tell you that the care is just too much and to give it up. That is not true. Yes, it can be very hard at times, but the joy and love you get in return are worth it. These kids can go to regular schools, with aides, they can graduate from college and be what they want to be in most cases. So hold that baby, learn to fight for what you feel is right, admit when you're wrong and try something else, and find a great doctor who is willing to be your partner, and check out oif.org, it is a wealth of information. Take care of yourself, eat right, and sleep and play.
- —tamihelms
