One More Day

That's Bougainvillea. It grows everywhere here. I've tried to grow it in hanging baskets in Bay Head outside the front door but it doesn't work. I miss Bay Head. I miss James and my cottage and my family and my dogs and my job and my friends. But most of all I miss those daily phone calls I got from Parker when he was on his way to work.

Hey, just on my way to work and wanted to check in. How are you?

Sometimes I would be too busy at work to talk. I know this is stupid, but I regret those times now. Not practical, I realize. We can't live on the premise that something might happen any minute. But we can remember to hug our children every day, to say I love you to whomever we feel moved to say it to, and to thank God for every minute of every day we get.

Not a sermon, just my thoughts.

Parker had a relatively uneventful night. Temp and heart rate staying pretty normal ("normal" for Parker is not normal for you and me ..... his normal is still indicative of a very sick young man). His nurse last night, Aaron, said he woke up about 2:am and was sure that his Dad and I didn't know he was in the hospital and got a little upset and worried. I had written him a note, but I don't think Aaron showed it to him.

The weird thing is I woke up at 2:10am after having a nightmare that Parker had severed his leg and John had to go into the hospital to donate an artery to do a transplant (I've never heard of an artery transplant, have you?). In the dream I was responsible for keeping Parker quiet so the leg, which was dangling by a tiny thread of skin, wouldn't fall off. In the dream Parker was agitated and didn't want to stay still. A helicopter came to take him to a hospital in Baltimore, but I'd never heard of the hospital and wanted to see a review of it first. Dreams are so weird....

Reality is weirder. MY reality is weirder. Right now I should be working like crazy at the florist for Mother's Day Week. As hard as holiday weeks can be at the florist, or as crazy as horse show week is at an equestrian center, or foaling season on a breeding farm, they don't even come close to the job I have right now. Can't touch it.

Francis, the Critical Care Manager, said to me today, I know you are living every parent's nightmare, every minute of every day.

The good news is, although Parker has set backs (and I was assured today by his new Critical Care Specialist that he will have more set backs that have to be battled one by one by one) his trend is towards getting better, not worse. I hold onto that thought for dear life.

I know Parker's brother, James, is having a hard time right now, too. It was heart wrenching for him to see his big brother like this, to witness Parker's confusion, to hear the alarms go off when he can't breathe, and to see the huge wound open on his belly, and know when he was going back for more surgery to push his guts back inside.

It is sad to watch Parker reach up to scratch his nose, not remembering that his arms are tied down so he doesn't pull the tubes and wires out of his body. It is really scary to watch the respiratory therapists push a wire down into his lungs to pull out the fluid and goop that builds up, and to see Parker's face cringe and turn as red as the side of a barn and his abdomen tighten so much it looks like the cellophane holding it all together is going to burst. The beeping sounds invade your sleep, the bugle like noise that tells the nurses someone's ventilator has come loose will forever be a part of our lives. Explaining to Parker every day, sometimes several times a day, where he is and why, until a flash of recognition crosses his face, and then the disappointment when he sees the date I write on the wall in big, bold, red letters every day, and he realizes he has been in the hospital for two months of his short life. It is all somewhat like a horror movie. But this is Parker's life right now. This is my life. And there isn't anywhere else I could be.

Yesterday when I was walking back to the room I passed a small garden of herbs I hadn't noticed before. For a fleeting moment I smelled the ocean. The same smell we wait for on the long trips to Bay Head, when we finally reach East Ave and roll down the windows for the last mile of the trip, no matter how hot or cold it is outside, so we can inhale deeply that aroma that means home. I don't know what the herb or flower was, but I will walk back that way again today and see if I can find it.

P.S. Dr. Weingarten told me today that, although they are "ashamed" that Parker got a yeast infection from the picc line, it was the best reason they could have asked for to explain the high heart rate and temp the other day. He said they will continue to culture the blood to be sure the meds they are using are the right ones, and all the lines and catheters and IV's have been changed. Hopefully over the next couple of days we will see improvement in the blood cultures. A yeast infection is certainly better than another pseudo-cyst brewing an infection in his abdomen. Ugh.... just the thought of that makes me feel sick.