<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>wallyworld</b></i>
Any words of wisdom for the emotional side espescially for my son? Thanks for the support I hope all is well for you all.</end quote></div>
This is very tough to deal with. We had never heard of CF before Jordan's dx, so when we first started searching for info, we read that the life exp. was around 30. Of course I was devastated. Jordan said, "Well Mom, 15 years is a long time." Of course to a kid it is, but I was thinking oh no it was just yesterday that you were a baby in my arms! I know he was trying to be strong, and maybe telling himself that helped him deal with it.
Of course we now know that some of the information we found in the beginning was outdated, and that much has changed in the way of medications/treatments that are raising that median age. This site was a huge benefit, because I found accurate information from actual CF patients & parents. For me, educating myself about the disease was the best way for me to deal with the anxious energy. Having something to focus on helped, and knowledge/understanding helped me feel less lost and helpless.
As far as your son's emotional health, I would talk with a social worker at your clinic. Everyone deals with things differently, and it's usually helpful for teens to talk to someone outside of the family. They need us parents, but they also need to talk to someone who isn't as emotionally involved as us. My son wouldn't share his fears with me, because he's very protective of me, and he didn't want to worry me. He tends to keep things inside anyway. He did spend a lot of time talking with his older brother.
I'm not sure if you have other children, but if you do, remember that this is hard for them too. My oldest felt guilty because he was healthy and his brother wasn't. He went through the grieving process just like my husband I did. Our youngest son had issues too, but not as bad as my oldest son's. For some people, a family counselor is a good idea.
The most important thing I can say is that you need to allow yourselves time to adjust to this. It is life changing, and it takes time. There are many stages of adjustment too, so take it one step at a time. Take a notebook to clinic with all of the questions you have, so you don't forget to ask something. Write down the answers so you can go back over things later.
If you need/want to talk to me, feel free to pm me.
Stacey
