Dr's meeting, family, and staying grounded

We had our meeting on Friday afternoon with Kyle's main dr. It was hard. We have to make choices for Kyle that will influence him for the rest of his life...that could influence our family, our other children...I sometimes get tired of making these choices for him...we left the appt and I had that feeling of driving..it was a beautiful day here and I wanted to keep driving. I took the long way home, doesn't that sound crazy. I so wanted a break from reality, I would...never, ever walk away from this...from him...never, but sometimes my brain hurts so bad that I ache for a break from it. But when you have children...you never really get a break, the kids are never far from my head, or mainly my heart.

We are going to Columbus Children's..it seems like the best fit for him. We should know by Friday when we are going, we are under a pretty intense time crunch, we are living with a PICC line and we know that it's short lived, the dr's here are nervous to put in a central line since every time we do he gets a bad infection. His dr feels strongly that the surgical material in his esophagus needs to come out, that it's adding to his issues. The problem with that is that it's a very intense surgery, complicated, scary.

So now we wait and we hope we can keep Kyle healthy and out of the hospital....

There are times where doing this is lonely, it's easy for us to retreat into ourselves. After the meeting on Friday, I felt incredible lonely. I didn't want to talk about it or think about it. I ended up going out with some girlfriends that night for the first time in months, it was wonderful...I laughed, and felt loved. It was exactly what I needed.
Then on Saturday night we had dinner with Mark's entire family, it was again exactly what we needed....we left dinner feeling loved and surrounded by support and comfort.
Family and friends keep us grounded...they keep us feeling sane and loved...as hard as this is going to be the amazing thing is to know we aren't alone, and that in itself is a wonderful thing.

XO
Kate