Tough days

Nathan has been very uncomfortable the last two days. We can't and wouldn't want to let him suffer, so we give the pain meds pretty freely when he hurts. It has knocked him out, but eased his pain and comforted him some. I can't describe how terrible it is to have him just asleep upstairs while we go on about our business (our business of mostly being emotionally unstable and trying to just get through with the girls). It is this horribly strange situation. He lays upstairs unable to be an active part of the family without being in terrible pain. The pain and sleep steal precious time. Its like he is halfway gone already on those days. Every day, hour, minute, second...the cancer marches on. He gets thinner and thinner. It breaks my heart every time I pick him up to carry him to a new position or to the bathroom and I realize how he is becoming easier to carry as he sheds pounds.

There are still the smiles on the good days. We could sure use one of those again soon. And even on the bad days there are still the quiet and insightful remarks that are Nathan's trademark. Perhaps we can get a handle on what is causing this increased pain and get him comfortable and somewhat active again. That is my current hope and prayer.

I don't want to have to miss him already, but its hard not to as he lays asleep in his room.


Can there still be joy?

One of the strange things that Susan and I have talked a lot about lately is dealing with how others perceive how things should be for us. Or I guess how we perceive they perceive...if that makes any sense.

Our child is dying. We have know this for a long time. We suspected it was likely years ago, but for the last year we have known it was happening. In recent weeks the decline of Nathan's health has become much more pronounced. We really don't know how much more time we have left with him, but the units to measure it in are weeks or months. This reality is every bit as horrific as you imagine. But it is different than you imagine. I know that it is different for other parents experiencing it than it is for us, and it is even all that more different for those lucky enough to never experience it. If you have friends or acquaintances dealing with something like this, do them a favor and don't project how you guess you might feel and act onto them. You will be surprised that they don't act and feel that way and your surprise will cause them unnecessary guilt or questioning about their way of dealing and living their lives.

You might be surprised that they don't sit around at home acting on their darkest emotions. They may not stay glued to their sick child. They just might go ahead and go to choir rehearsal or spend Monday night playing basketball. And they just might not be able to help finding a little bit of joy in the midst of their sorrow.

Susan posted about finding moments of joy in these dark days. I can't help but feel some joy ever day for my three children. It is complicated and bittersweet when it comes to Nathan. My girls are so wonderful. Julia is so dynamic and free-spirited. Lauren is adorable. I can't help but find happiness in my daughters. And it is my responsibility to allow myself to feel the joy the bring and to let them know that it comes from them.

I only know how I feel and act now. In many ways I'm a mess and I could become a complete wreck. We are losing a son. Our pain reflects the love we have for him. That is a lot of pain. We have two incredible daughters who we love and who will always need to know how much we love them and how much joy they are able to bring us even in the midst of our family suffering and loss. The joy I experience through them reflects the love we have for them. That is a lot of joy.

I can't imagine going through this without Julia and Lauren. They bring me great joy even today and I pray that I have the strength to continue to allow myself to fully experience the happiness that they bring me.


Summer nights

This evening I was sitting in the living room on the couch with Lauren. I was reading to her and she was flipping through pages in the books. Nathan was laying in bed asleep at 6:30pm. His window was open just a bit to let fresh air in. I thankfully heard no moaning or cries of pain, but through the open window, relayed through the baby monitor, I could hear neighborhood kids playing in their yards.

Nathan was either in pain or asleep today, but never awake and comfortable.