Monday, May 18, 2009

This Week

One of our favorite pictures from the hospital

I find myself hoping as each day passes that somehow the plot of this story is going to change. Somehow, someway, we will turn things around. Right now, I am not sure what that is since understanding what is going on is so complex anyway. But, anytime someone says, "I know this person that might be able to help you..." I have jumped at the chance that maybe that person can, whether they are a friend of a friend, a Dr. to offer a second opinion, or the brother, of a co-worker. I want someone to help us edit the crushing news that was delivered to us just 2 weeks ago. However, I am also struggling with facing the reality. Is it too much to hope for? How much time do we really have? How are we going to make the most of the moments that we have and how are we going to make THIS work? Right now, I don't see how I can leave Ryan's side (even though I have), my mind doesn't. It is constantly thinking of him, if I should be with him, can I help him, how do I make the most of these moments? What is he feeling? Is he suffering?

Today, I think brought these thoughts back to me as he spent most of the day either sleeping or fussing. He spent very little time "happy" today, cooing or just enjoying being with his family. I just want to help him... and swaying, shushing, patting, talking, singing, and holding just wasn't enough. It broke my heart to see him upset, but finally tonight, after his bath, he did fall asleep in my arms in the rocking chair in his room. That was one of few moments in the last few weeks that I felt I really did anything to "make it better" as all parents want to do. I just sat and prayed, rocked, cried and smiled at the sweet boy in my arms. I wanted to freeze the moment, drown out the machines, erase the thought of the tubes in his nose and the sticky pads on his cheeks and just pull him close to me.

I want this so bad that I talk myself into thinking, maybe he could eat from a bottle today? Should we try? Maybe we could try and see how he does withouth the oxygen? I get caught back up in that denial phase and I think I may remain there until we get some confirmation from the genetic testing or talk with Dr. Connolly, the neurologist at Children's. Even though I know we've been given good care by a very capable physician, I think I just may need to hear it again. So, Thurs. we go to Children's. I am anticipating this visit very much. I just want her to bring some clarity to the situation, or perhaps closure.

The past few days, our lives have been pretty hectic with phone calls, guests, emails, cleaning up the house, getting things back to "normal". I know that all of these things have distracted me a lot. It isn't until I sit down to type that I come back to what is really going on inside. It is as if I am going through the motions most of the time. The only person that has really been able to totally bring me in the "moment" is Charlotte. Playing with her is such good therapy and I know Chris and I are both thankful for her. She makes me laugh everyday, something that I know in a time like this is so important. Chris is also able to do that for me. We still can't understand why we are so compatable but our genetic makeup is not? Go figure?? But, if I had to choose, I know I would choose him again and again. He is so strong for me when I am weak and I am that for him too. Without that kind of reciprocating love, there is no way any couple could get through this. I hope that we are able to continue to be strong for eachother and strong in our faith. That is what will see us through.

So, as the week continues, I just hope that I have more "news". More to talk about, more to hope for, more reasons to doubt what we have been told so far. I just want Ryan in our lives... more.

Adapting to home

Jenn Hawn


Nancy Keller said...


I try to read your entry as soon as I get to work in the morning. My heart goes out to you as I try to understand what you and your family are going through. But I firmly believe that God knew what He was doing when He entrusted you with this darling little boy to care for.

You, Chris and the children are in my thoughts and prayers daily.

The Smith Family said...


Thinking of you today and hoping the visit with the neurologist at Children's goes well.