Connected

This morning I spent nearly an hour on the phone with Maria (Jacob's mom... the original CARS2 mom) talking about our boys and life with Mito.  It feels SO GOOD to be connected with someone who understands the feelings of isolation, jealousy, and frustration with the ongoing uncertainty.  But we also talked about the importance of not missing out because of all the downsides of having a medically fragile child.

Yesterday, I learned that another mama in Dodge City has a child facing a serious genetic condition.  I very quickly offered my support, even though she has MANY people on her side.  I knew how hard it is to wait for a diagnosis, but luckily hers came through before the end of the day.  I was amazed by the quick turn-around.  I'm so happy that she doesn't have to worry and wait for weeks or months to know what is affecting her little one.

One of the big worries I haven't talked about in the blog directly is the feeling of being invisible.  The feeling that you are completely alone in this.  The feeling that nobody else understands.  Talking to Maria helped with that.  Having our nurse this summer helped with that.  My dear husband helps with that, but we can only do so much to help each other.  Unfortunately, most of our support network of family lives states away.  The ones who are here are grieving too.

Maria told me it takes a village.  I think we all know that it takes a village, even with a "normal" kid.  I NEED our village.  I need to know that you're there.  When I'm overwhelmed, I don't see anyone who isn't right in front of me.  I don't hear anyone who isn't speaking directly to me.  I don't feel the connection with my friends that I am so known within my circle for feeling.  Please don't hesitate to send a random message that you are thinking about us.  Please don't scroll past a post and smile without commenting or giving a like. (I'm sad to say that your feedback on social media contributes to our feelings of self-worth right now.) Many of you have asked what you can do to help us... reach out.  Make sure that we really do see, hear, and feel you... because we are lost.  Even when we look like we have it together we aren't.  We are just getting by.  School friends who have learned about trauma... we are living it.  (Think about the picture of the brain from the slideshow.)


I'm happy to be connected with Maria.  I want to make sure that I stay connected with my friends and family here because we all need somebody to lean on... yeah, I know... using song lyrics again.

I took away four very important things from the converstation this morning:

1. Don't stress about his end of life, you can't really prepare for it.  You'll know when it is time.

2. Realize that worrying takes away from your time to ENJOY him.

3. Trust yourself and your knowledge of what is best for him.

4. Take care of yourself.