We saw Owen's eyes for a bit yesterday-he had a sip of water and about 3 small spoonfuls of yogurt. That is about what he did today, as well, although while asleep today, we could have picked up his arm and dropped it to the couch and not gotten a reaction from him. I am so pleased that he is still opening his eyes for a few seconds each day. I love lying next to him at night. I usually have my face close to his so I can feel his breath on my face, and have him as much in my arms as is possible. He used to sleep lying across me, but that is not comfortable for him anymore...

Somehow yesterday my "Owen" ring came off of my thumb and is nowhere to be found. I purchased it on Owen's Make a Wish trip when we were at Universal Studios-it was a silver band with Owen carved into it. I'd like to imagine that it will turn up somewhere, although I have searched all of the probable places and have not found it.

Hoping to see Owen's eyes tomorrow...

"We got another one!"

I have said for the past week or so that Owen has only opened his eyes for a few seconds here and there. It doesn't seem possible, but he is awake even less now. Yesterday and today, I have only seen glimpses of his eyes peeking, today even less than yesterday thus far. He did say "ow" when I moved him to change his diaper, clean him up and change the pad under him this morning, even with the bolus push. I have to imagine that his body is pretty stiff even though we do move his limbs now and then throughout the day.
Sometimes, I just keep thinking that he will just wake up, get up and want to play and ask to hold his dvd's, ask for all sorts of food and go to grandpa's and the park, and do all of the things he used to love to do. I know what the reality is, but that doesn't stop hope. I have to imagine that heaven for him would be all of those things, as well as all of the music he loved, and being able to play with (and tickle) all of the characters he loved. He loved ALL of them! That was the absolute best part of any of the trips we took for him was seeing all of the characters. He loved to tickle people-anything to make people smile and laugh. He is such a sweet, funny kid. I miss all of that. Even though he is still physically here with us, we will never see that part of Owen again, which is incredibly sad. I wonder what he dreams about all day? I hope it is all of the things I mentioned. I have to believe that his dreams are happy and fun for him.

When I moved Owen this morning and gave him his morning meds, etc, he opened his eyes and said "hi" then closed his eyes again. I was able to hold him for a few hours today, so there were two incredible gifts I received.
Owen was in a deeper sleep today. He rarely opened his eyes, and had nothing at all to drink or eat. I can't imagine the body being able to maintain for long without nourishment. I keep hoping he will wake up and at least take a spoonful...

I started to cry today while stroking Owen's face, realizing that I have likely heard him tell me he loves me for the last time earlier this week. He continues to get weaker, and awake even less. Today, I noticed that he didn't complain as much when I moved him which indicates to me not that he is more comfortable, but that he is getting closer and closer to the stage where he does not wake up at all. I suppose he is more comfortable as well-which is obviously a very good thing.

Yesterday, Owen opened his eyes while I was talking to him and said "orange juice"! I obviously ran to get him some, and he did have the cup in his mouth for quite awhile, and swallowed a bit. I thought while he was awake that I would offer him some yogurt, as well. He did take two very small spoonfuls before he shut his eyes and went back to sleep. Ah, the small little triumphs that mean so much!
He has not been awake more than a few seconds today. I guess I should say he has not opened his eyes for more than a few seconds. I believe that he may be awake and listening more than he appears, but does not have the strength to open his eyes for long.

My dad is taking Anthony and Seth to see Cirque du Soleil tonight. Anthony has no idea that they are going-he is going to be so excited!! The tickets are 4th row in section 12, so it sounds like they will have awesome seats! I wish that I could go with them. It has been so difficult to give the two of them the amount of attention that they should be getting. They both do understand the situation, but it is so important to remember my other two children, both of Owen's brothers, as well. Even though they are not ill, they are obviously just as important to me as Owen is. I do try to spend time with each of them everyday, and let them know often that they are not forgotten. I will never be able to make up for the year and a half that I have lost with both of them. I really hope to be able to spend much more quality time with both of them in the future, and that people remember them and what they are feeling now, and the loss that they will experience.

An extended illness of a loved one is very trying. You begin to grieve all of the changes you see, then come to accept them. You grieve the child he once was, and what you know the future will bring, but you are also so thankful that you have been granted the time with the knowledge that the future with that person is limited, allowing you to do things you may not have done (for example Sesame Place, Strong Museum, Disney) and say things you may not have said. The knowledge that you will lose the person you love causes you to throw away those little things that used to bother you and cherish them along with every other moment you have left. I know people have said that they do not know how I do this. I am not any stronger than anyone else, I was simply handed this "card", if you will, so I am forced to adapt, as anyone else would given the same situation. I can't imagine losing a loved one suddenly, without being given the opportunity to create memories we would not have had, take a million pictures I may not have, without being given the opportunity to say goodbye. I can't imagine getting through that. Can't imagine being able to get through a miscarriage, or SIDS, or an accident...I can't imagine life without Owen, but I am thankful that I have had the chance to spend this time with him. To be able to care for him as I have. I can't imagine not having had that opportunity.