Sometimes I see him looking over my shoulder or gazing at something else in the room like this. Often, I wonder what is so beautiful that he is looking at? Is it possible that I can't see it? In the middle of the night, I often feel the presence of someone else in the room as I kneel by his bedside. I look up several times to see only an empty doorway. But, I don't really believe that he and I are alone... I feel something very strong in those hours.
Today, my mom is over helping my sister with Ian so she can sleep after her night shift, Chris is at work, and I have had a relatively quiet day. I can't say that I've had too many of those in recent weeks. I am thankful for it and sad all at the same time.
Last night, Ryan did sleep pretty good, only waking once at 3AM because he had another heart rate drop. He was quite upset afterwards and we tried the relaxation medication, but after 30 more min. of crying and being upset, we tried something new. Yesterday, when the Wing's nurse, Kim, was here, we organized a plan to have some stronger pain medication in case that is what is wrong. We got the morphine last night and decided to give it for the first time when he couldn't calm down. It worked really well for him and we were glad he was able to settle down and go back to sleep fairly quickly.
This morning, he woke around 8:30 upset again. I did the usual things to help him, but this time avoided giving the relaxation medication and went straight for the morphine. He had a couple of heart rate drops, but overall, the medication worked well for him and he was awake and happy for much of the morning. I was thankful that he seemed comfortable and layed him down for a relaxing nap sometime just before noon.
He has been asleep ever since, and it is now 4pm. I did the dishes, dusted, paid bills, watered my plants and even got downstairs to give our dusty eliptical a test drive to see if it still works. It is weird having time to myself like this. I wish I was like all the other busy moms out there who are toting kids around and busy with those kind of normal things. I almost don't know what to do with myself. I enjoy having time for just my own thoughts and just to "be", but also don't like the quiet. Ryan should be babbling and cooing at me, crying because he wants up from his nap, banging toys and practicing rolling over and sitting up. The silence as I layed with him on the couch this morning was deafening. His eyes do talk to me, but I really miss his voice and all the things that my mind tells me he should be doing.
As I am typing, I can hear the hum of the oxygen compressor, the fan in his room to keep it cool. I am dreading the day that I don't even have those noises to listen too. Something in my gut has told me lately that things are really getting worse right now. I am glad that Ryan is more comfortable with the morphine, but also sad that he needs morphine to be comfortable. I wish I could take all of his discomfort away for good and restore his body so he can enjoy life. It has been really difficult to wish his life to continue with how uncomfortable and upset he has been the past few days, but today, I have hope that maybe we can keep him comfortable enough to have a few more happy moments to share together.
We haven't taken many pictures lately because things have just not been that great for Ryan. Here is one we caught of him the other day... We both can't get over how blue his eyes are.
Our strong little boy.