I am going to do something different. Please watch for it and comment on it. We post and help each other on how CM affects us or our kids. Some young ones (no offense intended) share how their lives are effected along with their own personal struggles. We even have caregivers here.
All of this is great because it is what makes us able to help each other and be strong when we need it. We have varied points of view from experiences, from all ages and from all perspectives who have or care for CM.
I am going to type what Katrina (my 8 year old) says about CM and how it effects her life cause I am affected by it. I think it will add a new dimension. I plan on doing this sometime soon. The blog post will be entitles Katrina's view or something like that. IT will definitely have her name on it
Michael, I think that's beautiful and brave. My kids and my husband and I have tried to make the best out of my health problems over the years but it really effects them. My daughter is 16 and I feel so guilty that so much of her life has been consumed by my health issues. I am running out of time with her under my roof as my baby and it is making me so sad for all the time I feel like I have lost with her because of being in pain or having a headache. Make the most of your time with your girl. 8 turns to 10 turns to 12 turns to 14 sooo quick. They are so beautiful and precious.
Michael, this is a wonderful idea. As a mom, I feel a tremendous amount of guilt, but as a mom with Chiari, it makes it even worse! I love my 10 yo more than life itself, but there are times he really hurts me. He has been a trooper, but he, as I, thought that the surgery was going to make things so much better. It is hard to hear things like, "I don't mean to be mean but....." He complains very little but when he does, it hurts my feelings. I am a good mom, but I see where the fatigue isn't only wearing on me. I am very open with him and we talk often. I just don't understand what he has/is going through. I can't imagine being a child of a sick parent.
It would be great if the kids of parents with Chiari had an outlet also. That may be a good idea for a facebook group. I'd be interested in starting one up if we think it's a good idea.