Saturday, January 2, 2010

New year, more progress

Mielle and I went to Chicago again for an appt on Dec 9. The trip was a raging success in many ways - we had SO MUCH fun with Amy, who once again flew from NJ to spend time with us in Chi-town, as well as Kristin and Nancy who made the treks from Madison and Milwaukee, respectively, to see us. But more importantly, the doctor appointment went really, really well.

Everyone was thrilled with how well Mielle looks, and I got a little emotional, thinking of where we were a year ago, 18 months ago, two years ago... ugh. For a while there, it was looking uncertain as to whether we would ever get to the other side of this thing. And of course, we're not on the other side - yet. But things are looking better and better for our chances of getting there.

I vividly remember our first appointment in Chicago, when Mielle was a giant steroid puffball, her skin was a mess, and she was completely miserable in every way. She looked terrible, and she felt terrible, both physically and emotionally. Appointment day is a long day, especially the first-ever, and it was all I could do to help her get through the day with minimal outbursts of rage and/or crying and/or screaming. We were prepared - we had tons of activities (including a special backpack loaded with fun stuff that our friends from Mielle's pre-school had given us) and snacks, etc. but it was still incredibly difficult. Mielle did NOT want to be there, and she made it clear. She barely spoke (unless grunting and growling counts) and she'd play with one thing for a short while, then fling it away and thrash around on the examining couch, ripping up the overlying paper to shreds. The room was a complete shambles by the time Dr. Pachman actually made her appearance, and Mielle looked like a wild animal. It was horrible. I was barely holding it together myself, between trying to manage Mielle and my own emotions, while still absorbing all the information presented, asking the right questions, etc. I remember this sensation, this feeling of "how did we ever, ever get HERE?"

JDM is the only disease treated at that clinic, so when you see another family there, you know they have the same thing. I remember another mom and daughter there that day. The girl looked a little older than Mielle, and there were no outward signs of the disease, or side effects from meds. She wasn't unhappy; she was calm and pleasant, having a conversation with her mother. They simply seemed normal. While for us, things felt about as far from normal as you can get.

I could feel the other mom looking, trying to catch my eye and start a conversation, share experiences and perhaps offer support, but I just couldn't return the gesture. I felt on the verge of breaking down at any moment, and had to focus all my energies on simply holding it together. Somehow, that openness from another mom, that act of kindness, was too much to bear. I just... couldn't.

All of this was running though my mind during this last appointment. This time, Mielle looked great, felt great and (while she is still on a truckload of intense medication) things mostly seem normal again. It was all smiles from the various people passing through - the nurses, the physical and occupational therapists, the volunteer parent liason Jacqui, etc. Mielle was a little impatient about being there, but she answered questions, cooperated with the exams, and was mostly concerned with running to the window to look at the falling snow (exciting for a California girl!) and speculate whether it would cause Amy's flight to be delayed. When one of the nurses mentioned almost in passing, as she left the room, that Mielle looked great and "we need to get her off some more of these meds", I cried.

The door stayed open when she left, and across the hall, in another exam room, I could see a boy around Mielle's age, with his mom. He was very cushingoid, puffy and cross, flaming red cheeks, not talking, and the mom was laying on the exam table with him, just trying to comfort him. It broke my heart.

As we were leaving, we passed yet another family in the hall. Another sad-eyed child, exploding from steroids. Another prent, this time the dad, looking haunted and grim. We got on the elevator together, and I looked hopefully at the dad, trying to catch his eye, give him an encouraging smile, maybe share experiences. But he couldn't look at me. And I utterly, completely understood why.

So, the fight goes on. Mielle is doing wonderfully, for which (obviously) I'm extremely grateful. But our journey is not over, and really never will be; things could change, and quickly. We hope we are on our way to remission, but even if we get there, this thing could come back, because we have no CURE.

And in the meantime, there are other families... heartbreaking in their familiarity. And since many kids actually struggle much more than we have, suffering many more complications and setbacks... they are also heartbreaking in their differences.

So I won't stop running, and fundraising, and doing whatever I can to support Cure JM; their work truly reduces the suffering of families like mine. And unfortunately, there is no shortage of families that need the help.


Erika Bradford said...

I love this entry. You have a wonderful gift for expressing your deseparation, and elation all at the same time. It is truly emotional which is why I am slightly weeping while typing this message. Keep on keeping on! *Tears*

by Suzy said...

Erika, I'm really looking forward to meeting you in Austin!