The Complete RED Survival Guide

My History
About RED
Basic Tips
RED Survivors
Food and Diet
Email Diary
Contact Me

If anybody has anything else they would like parents to know, please email me.  All suggestions are completely appreciated!

Dear Parents,
          This is a terribly stressful time for both you and your kid.  Unfortunately, a procedure of this magnitude requires a huge commitment and devotion to your child.  While I know that today's corporate society is not big on taking time off, this is an occasion that basically requires you to drop everything and become your child's servant.  
          While some people may be thinking that the word "servant" is an exaggeration used for artistic purposes, any parent who has been through major surgery with their child knows otherwise.  For this reason, I would highly recommend sending any younger siblings away.  Sounds cruel, but it really helps the patient (and parents) to have younger kids stay with relatives.  Plus, the sight of a recovering patient can be a bit disturbing for siblings (purple is rather unnatural looking on anybody).  My sisters both stayed with my grandparents while my parents and I stayed at the McDonald House during recovery.  However, there is something to be said for siblings being able to see what their brother or sister is going through and being able to become another advocate for him or her.  I'll leave the sibling stay/go decision up to you.
          You are your child's advocate, especially when it comes to communicating with the surgeon.  It sounds like a huge burden, but you must be willing to speak up and voice any and every concern you think of to your surgeon.  You, having been through all you have with medical professionals up to this time, are probably much more medically savvy than you think.  Don't ever let a surgeon talk down to you or make you feel like your concerns are "stupid" or unworthy of attention.  You have parental instinct, they don't, so don't be afraid to speak up.  
          Trust that everything is going to work out fine.  Have faith.  Trust the surgeon.  If you feel like you can't trust the surgeon, talk to other parents who use the same person or can recommend a second opinion.  Teeter's Page and many other websites on the Link's Page have great tools for parents to use to communicate with other parents. 
          One last word of encouragement:  This experience has the potential to do great things for you and your kid, and not just purely on a physical level.  Believe me when I say these kids will be amazing powerhouses when they are done with all this medical "stuff" and will be able to do great things because of all they've been through.