Emotionally tired

Yep that’s me.

We had two different treatment scenarios for Nathan today. The first half of the day we were going to New York next week. The second half of the day we were staying here and doing some scary/harsh chemo for Nathan. Contemplating both things has left me done. In fact I had a beer for dinner and it as affected me like it was a double shot of whiskey.

Add this to my constant question of how you deal with a child who you know is going to die sometime in the next few months/years but is not “dying” and is in fact feeling great. How do you live with that? I guess what I have come up with is what we have been doing all along. Just try to live life as normally as possible. It really is the everyday little things in life that matter. My victory over this beast is to live the best most life I can which will give Nathan a childhood as close to “normal” as is possible. That said – it takes more effort than you all can imagine to do that.

To that end we went off to the swimming pool and I left Luke manning the phone to talk to the oncologist about Nathan’s plan. The kids had a blast. Sure – Nathan stood out with the whole lack of hair thing – but he didn’t even see the stares.

7 responses to “Emotionally tired

  1. Hey, Susan. Hang in there. I can’t imagine the emotional exhaustion you are dealing with, but you seem to be doing it well. I’ve never seen a happier looking bunch of children. One day at a time.Sondra M.Ocala, FL

  2. Susan, Justin died in 1999 and during the last year of his life the camera was following him and the other four kids at Childrens Hospital in cincinnati. Unfortunately it was there during the worst part of his short twenty years of life. We knew the final three or four months that he would not make it but we did not want to admit it. The only information I can pass on is your son is up and going and enjoying himself and you should try to remember these great days. Our prayer is that maybe he can pull through and life might become normal again. No matter what happens your son, you and your family are truly the Lions of this world and you make it a better place for all of us. Dale AShcraft

  3. I think of you guys each and every day and wish I was there to help you through this.

  4. Susan, I’m sorry this is so hard. We’re thinking of you every day.Dale, thanks for participating in the documentary, it was important and moving.

  5. Susan, I can’t imagine what you must be going through. I truly don’t know how you do it, but I have all the respect for you in the world. I am always up for Coffee…as a matter of fact, Marie and I are supposed to go tonight…call me if you want to go to. Talk with you soon! (((HUGS)))

  6. You are an amazingly strong woman Susan. I love how Luke refers to you as his rock – that alone says it all, in my eyes. As I am sitting here, Jason is playing his guitar. I love to listen to him to play. I hope to hear you and Luke play one of these days! Maybe the 3 of you can jam! : ) I hope your music can help you escape.You are in my thoughts each day.

  7. Thinking and praying for all of you. You are so closely in my thoughts and prayers these days!!May God hold you close to HIM and guide you through these grueling days.I hope you have some more great summer days together this week!love — Katie

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