For the past few days, Owen has been more tired, not speaking much at all. Yesterday, he ate only two tiny spoonfuls of yogurt, and didn't have anything to drink. We continue to offer him things to eat and drink, even if he is unable to answer us. He does open his eyes here and there, although we are not entirely sure how much he is able to see clearly. I am no longer able to hold him on my lap-it is just far too painful for him to be moved that much. Obviously, keeping him comfortable and pain free is most important, so I make that sacrifice, knowing that likely, I will not be able to hold him that way again.
There is no standard measurement for the amount of pain one feels with the knowledge that she will lose her child. No Richter scale to give a comparative number to people who have never watched their child slowly decline. This particular time is most difficult to date. It is wonderful in numerous ways because Owen is still here. Although I am not able to hold him in my lap, I am still able to touch him, kiss him, listen to him breathe. Yet, I know that time is so limited now. I see him getting more and more tired, less able to fight. Of course I would continue to care for Owen for the rest of my life, even with the circumstances being what they are. What is most troubling for me is the knowledge that I will not be able to do that soon. Someday, far too soon, I will not be able to do those things with him that I cherish so much.

Owen used to love singing along with the song by Kenny Loggins "Return to Pooh Corner". He loved watching the following video on you tube, calling it the "original Winne the Pooh". I still play it for him now, and his eyes open when he hears the familiar song. Although he is not able to focus on the screen, at least he is able to listen.
http://www.youtube.com/watch?v=O5qMGXq_nhU

Owen opened his eyes today, ate a tiny bit of yogurt and had some sips of water. I brought out the video camera today and yesterday to capture his awake time, something I should have been doing all along. He is still comfortable. The medication he is on has been working wonderfully for that. He knows that we are with him, he will reach to hold my hand at night and when sitting next to him during the day. He also asks to be held some, which is my favorite time of the day!
I have been reading him his two favorite books every day-White Rabbit's Color Book and Goodnight Moon. If he is asleep when I begin, he always opens his eyes, or I notice that his breathing changes so I know that he is listening, and glad to hear the familiar words. I also play songs from "Little Shop of Horrors" that he used to sing, and the song "Back to Pooh Corner" by Kenny Loggins. He loves Christopher Robin and Pooh. When in Disney, Winnie the Pooh gave Owen some honey to eat. He was pretty excited, and the character assistant told Owen that Pooh doesn't share his honey with anyone, so he is pretty lucky!
I am so thankful that he is still with us. Everyday, I am grateful that we have been lucky enough to have him for another day. I don't know how many we have left, but we so value the ones that we are fortunate enough to receive.
I love you all and am sending you a big cyber-hug. This journey is difficult on all of us. I am so appreciative of the support we have received, but I realize that I am not the only one hurting. May you all find some comfort in happy memories and find beauty in every day.

Seth is sad that he has to go back to school, because he will be missing out on moments like these...

I got to hold Owen for awhile today. He felt like heaven in my arms. Got to see his blue eyes and kiss his soft lips. He was not awake for long today, but he did eat about 1/2 of a yogurt. We are giving him extra saline flushes when we give him his meds to help a little bit to keep him hydrated. Once the body begins to slow down, it requires far less calories and fluid, so putting Owen on an IV for hydration would actually create more problems-his heart would have to work harder, and his lungs, and he would retain fluid, etc. But giving him a few extra flushes a day only amounts to an extra ounce or two of fluid, so that little bit helps to keep him hydrated a bit more since he is not drinking much during the day.
The kids start school on Wednesday. It would have been when Owen had his first day of Preschool. He would have ridden a school bus for the first time, had his little backpack all ready, waiting with his brand new sneakers...I think about the little boy or girl who got to have his spot in the class he would have been in. Think about those kids who will be starting pre-k that day, who would have been in his class, would have been his friends.
All 4 of the major networks are airing a special this Friday called "Stand Up To Cancer". On the following website www.standup2cancer.org for a $1 donation you can launch a star for someone that you love, or add to a star that has already been created. I created one for Owen, my sweet little angel. You can view it by going to the site. Amazing that cancer research has come so far, yet so many are still dying from it, and it's treatments leave the body in a weakened condition for those who do survive. I hope that someday there is a scan that will catch cancer at its very earliest stages, promoting the chance for a cure. I hope that the treatments will be much less caustic and damaging to the body. I hope that the survival rate increases, so that parents do not have to watch their child go through treatments, do not lose their children. I hope that children will not have to suffer through surgeries, chemotherapies, radiation, infections, blood transfusions, bone marrow extraction (where they put a huge needle into each hip bone and draw out fresh bone marrow to possibly use in the future if a bone marrow transplant is needed. Oh, and before they do that, they need to do the same thing to check to see if the bone marrow is even ok to use, so the child needs to go through it twice).
Here's hoping that I get to see Owen open his beautiful eyes and hear him tell me that he loves me again. Every second I have with him is a gift. Every single second...