May 10, 2010

Garrett had a really good day again! We spent several hours at the hospital early then had the obligatory hours-long wait for a call late this afternoon to give us the results of his tests. Everything is just where it should be at this point and his echo again showed some improvement. The significance of him getting stronger right now will be telling when we get to biopsy.

During the first few days in this chapter of the journey, Garrett’s heart beat so hard it literally would rock his whole body side to side. Nurses didn’t need to hold his wrist to check his pulse; they could watch the arteries pulse in his neck. Things are certainly a lot better now. As I lay next to Garrett tonight, I can still feel his heartbeat, but it’s not nearly as hard or animated.

Normally on Mondays after the appointment, I head back “home” so I can get ready for work again. But this time was different. Last week when I left, Garrett was upset and told me “daddy, you always seem to leave when I’m feeling good”. That comment stayed with me all week and I decided that if he was still feeling good after his appointment, I would stay one more day just to be with him and celebrate. Fortunately my bosses have allowed me the flexibility to do just that and I have a great team of folks who support me. So tonight we were in our basement hide-a-way and had a “family night” for the first time since he got sick.

We decided to watch a movie and picked “Radio”. While the story doesn’t mimic our journey, it did drive a point home. In the movie, Coach Jones’ commitment to an exceptional young man drove him to choose between the job he loved and a boy who needed him. As you can imagine, he chose to mentor Radio and walk away from coaching full-time.

While it’s not realistic in my world, it reaffirmed my desire and commitment to take these extra days once in a while and enjoy Garrett, mentoring him as a daddy should, when he’s not feeling so sick and not having to leave him as soon as he is “feeling good”.

Too often in our worlds we confuse “needs” and “wants”. Because of the hand that’s been dealt, we have spent too much time living apart in different towns over the years. The disruption in daily life seems almost normal in a way. We spend our time living out of a suitcase, trying to find continuity as a family unit while surrounded by others; trying to keep up with bills here when all the mail goes there; trying to find 10 minutes to be a married couple and have a conversation when we don’t have anywhere we can call “our own space” to do so; and all the while trying to build a sense of normalcy that every family unit needs.

I’m not going to pull a Coach Jones and quit my job, but I am trying to keep my “needs” and “wants” lined out if possible. Right now, my children need me to be close, Kathy needs her husband to lean on and I need to be with them to keep my sanity.

Because of Garrett’s health problems, I’ve spent more time with my kids than most dads get to at this stage in their life. Granted the time hasn’t always been fun time, but any time with your kids is time well spent. Before he fell asleep tonight Garrett said “daddy, I can’t wait until we can go home”. Well I got news for him, “home” is where the heart is, and mine is right here.

Have a very blessed day.

JD