Jordan's Journey

Jeanette and I escaped for most of the weekend. We checked in to a hotel and did absolutely nothing — other than lounge around the pool deck, read magazines and sip cool cocktails.

Jordan got an escape of her own. She spent the night at her grandparents and partied in their hot tub. Grandma did a good job of pampering her. She was smiling wildly by the time I saw her Sunday afternoon. That’s when our family got together for a Sunday dinner before Jordan had to check back in at CHLA. Our feast offered more nourishment than food alone. (more…)

I’m not going to lie to you. Lately I’ve had a lot of anger issues. It’s not that I run around screaming at people or bashing walls with blunt objects. It’s a slow, teeming displeasure that errupts in outbursts of visible frustration.

The crux of the problem, the god particle of the issue, the kernel that explodes every time is resentment about the unfairness of it all. It isn’t how unfair it is to me, nor the imposition of illness. It’s the toll that it is taking on my daughter. This toll is always made evident when my screensaver springs to life on my idling laptop. There they are — the pictures of Jordan at the height of wellness, her cheeks blushing with baby fat and her smile eviscerating any hint of abnormality. (more…)

Jordan is doing well and working hard at the rehab clinic. Each day she follows a fast-paced, intensely regimented agenda of physical, occupational, and speech therapy. It’s still too early to tell how much progress is being made, but we’re getting a lot of good feedback from her physicians and specialists.

The toll of being away from home so much is starting to show. She’s still generally happy and upbeat, but she gets blue now and then. She’s also started having a few more — as we lovingly refer to them — “hissy fits”, but she gets over it and finds playful ways to lift her spirits.

She’s doing very well. Her first week of inpatient physical therapy went smoothly. She is handling her stay with great humor and poise. Each night when I arrived to visit her she simpered playfully. And the best news of all: she’s been granted a weekend pass. She’s coming home Saturday afternoon to spend time with her family … and her cats … before checking back in Sunday evening.