Jordan’s Journey

I’ve seen a lot. Working in entertainment does that to you. There are a myriad of memories and experiences that caused me to sigh and feel so little in comparison to the apparition of greatness. A David Lean tracking shot. A Bob Dyland lyric. The helicopter onslaught in Apocalypse Now. The opening strains of Aida. A Hockney portrait.

Jordan.

She may be the most humbling experience of my life. She’s so strong, so noble, so dignified. Watching her muster the energy to go trick-or-treating was a work of art. Slow, methodical, spirited — she set her mind to celebrating Halloween, and she did.

I tell you, there are few things more beautiful in life than watching this child march on. Every time I believe hope is sapped from my veins, she proves me ignorant. I draw strength from her countenance. I am humbled by her vibrance. She captivates without trying, resonates with little motion, and endears intoxicatingly.

Jordan rested well over the weekend. She’s moving around the house skillfully and finding new and inventive ways to occupy her time. She wanted to clean all day Sunday. It was an obsession. I can’t say there was any joy in it. It seems to be more of a compulsion than a way to pass the time. I think she wants to prove to herself what she can still do.

I haven’t written much in recent days. Ordinarily, writing helps me process and purge. Throughout Jordan’s illness, writing offered a refuge. But in the these last few days, words are hard to muster. I am desensitized–numb. I think we all are. We are relieved that Jordan is home and that she is awake again. But it doesn’t really feel like she’s completely back. A part of her is missing. Smiles are hard to coax from her. Her words are all a jumble. Sometimes, what she says is completely nonsensical, but what she means is perfectly sane. She told me I was the “oldest birthday in my family.” What she meant was that I was the only brother. When she said this, her face revealed her frustration. She doesn’t let it stop her, though. And that is something to celebrate.

We are grateful to our many friends. So many of you have wanted to help and have proffered prayers and well-wishes. Our family has been very guarded in these recent days. We’ve placed ourselves in isolation. I’m not sure why we’ve chosen to handle our grief and our anxiety this way this time. We feel blessed by the love and support around us, even if we haven’t been the most accessible. Thank you.

Ever since her very first hospital stay, Jordan has reacted well to pet therapies. Specially trained dogs visit the hospital nearly every day. Their sole purpose: bring a little joy to sick kids. In Jordan’s case, the effect is startling, as these three pictures reveal.

The first picture is from her second day in the hospital, when she was in a continuous state of unconsciousness. Notice that she tries to open her eyes for the picture. Her hand was not placed. She reached out for the dog just before the camera caught the picture.


The second picture is taken a couple of days later. Jordan was unconscious most of the time, and beginning to have very serious seizures. Just before this picture with Moses was taken, she bolted to a sitting position. You can see Jeanette rushing in to stabilize her.


The last picture was taken a few days ago. Though difficult to make out in the photo, Jordan smiled at the dog.

She’s trying to do too much too fast. Her body isn’t keeping up and it’s making her sad. We experienced a night like this once before. I think the expectation of coming home rarely lives up to what she imagines. But we are happy to have her back. Luc is trying very hard to do things for her. He’s a bit clumsy, which frustrates him. But how wonderful he is to pamper her so!

It’s been a long day, so only a short post tonight. Jordan was discharged from the hospital this evening. She couldn’t wait to get out of there. She had a generally good day visiting with some of her favorite friends before getting the green light to come. She needs to slow down — she tries to walk on her own through the house, which is dangerous — but we’re happy to have both of the Vincent girls back “in residence.”

More to come tomorrow…

Not much to report today. She did not have the test because the doctors thought she needed a day to rest. She’s moving around a lot more. Her speech is better, but there’s a long way yet to go. She did start eating again. And … she keeps asking to go home … every 20 minutes.

The test is rescheduled for tomorrow. I’m sure between now and then she’ll try to cajole, trick and badger us into taking her home. More to come…

There’s a great quote attributed to the actor Laurence Olivier:

There is a spirit in us — that makes our brass to blare and our cymbals crash — all, of course, supported by the practicalities of trained lung power, throat, heart, guts.

There can be no doubt that Jordan possesses all four of Olivier’s practicalities. And she has no shortage of spirit. Be it cross, determined, ornery, charming or doleful, she generously shares her pains and pleasures with those in her presence. She is not easily subdued. The tumors try, but the odds are against them. (more…)

The test went well. She was actually awake during most of it and she was very cooperative. It took a long time. We have no new information, other than the pressure was not elevated. That pretty much rules out a shunt malfunction.

She’s much more talkative. She keeps saying she wants to go home. I think she keeps asking so that one time we’ll slip and say, “okay.” She doesn’t look sad as much as she looks cross and determined. We love it. Her fighting spirit is in full force. If she keeps up at this pace, she may get her wish very soon. But there are still mountains to climb. She’s eating through a tube, speaking sloppily, and barely able to use her right arm. We just keep encouraging her to “get mad at it” and “show her tough stuff.” She will.

She hasn’t gone for the test, yet. She’s very alert and trying to speak a lot. It must be frustrating for her because she has to repeat herself so much. Even then, we still don’t understand what she’s trying to tell us. One phrase is loud and clear: she wants to go home. She gets very sad when we tell her it won’t be today. But she weather’s through.

I told her she was “a tough old broad.” She nodded her head strongly. Then said, “yes!”

She slept well again last night, but went to bed late — a sure sign her condition is improving. Later this morning she will have a spinal tap in order to rule out shunt malfunction. She will be sedated. I’ll send an update later in the day.