Category: Special Needs

#1 because  I expect there will be more in the future.

We are on the last day of the most recent hospitalization out of town. We were here for three weeks in April/May, 4 days in June, and 4 days in July.

For the first visit, we were in PICU for most of the visit. You expect activity, noise and lights in a place like that. But everyone speaks quietly. That’s part of their “motto” – quiet promote healing.  The last three or four days were in a regular room in a Patient Care Unit. Our neighbor had already been there several days, or maybe weeks. They had a routine already set up for themselves which included many visitors, sometimes until midnight (oops, one of them was a staff member from a different Unit). Visiting hours end at 9PM. Quiet hours are 9PM through 8AM. NOT in this place.  We had this experience every night we were there.

In June, our neighbors were respectful of quiet hours. However, the staff probably just forgot we were in the room. Normal daytime voices. Well, OK, this is their daytime, maybe.

This visit has been the worst. I “get” that a certain amount of noise is expected from children, I have children, but, here again, no one uses their indoor voices when another patient is sleeping, or trying to sleep.

I really can’t wait to get home and we have some control over our environment. I guess I’m spoiled living in an area where you can hear crickets and frogs at night. Where I can walk outside  and the only light is the moon  and I can see the stars.

 

Everyone here has a curtain. It can give you a sense of privacy. At least from eyes. Ears can’t be blocked off.

We had a PICU neighbor early in our stay. He’s 15 years old with a hereditary problem with vertebrae in his neck that just sort of float. (I learned this from his mom a few days later. English is not her first language, so some of what I was hearing, I may not have understood. But with gestures and words similar to the words she wanted to use, I mostly got it.) That day, he sat on the couch, pretty hard the way some kids do, and felt instant pain in his neck. His dad immobilized him and he was brought here. He had surgery that night to insert plates and screws to hold him together. He was up walking 2 days later (she was excited about this and shared the story with me) and the following day, he and his family went home.

Today I spent 5 hours doing laundry at the hospital family room. The first hour was waiting for a washer (there are 2) to become available. During this time, I had a conversation with another mom, also waiting. English was not her first language, so we both worked to understand each other. She has been here, mostly alone, with her 21-year-old son for 5 months.  As I understood, which may not be totally accurate, he had lung cancer a few years ago, had chemo and went into remission. He started getting sick again last October. By November, he wasn’t able to walk or move around very well. December, he wasn’t eating or talking. Stanford sent an ambulance to pick him up from his hometown which is about an hour away. Cancer was back in his lungs, progressed to his stomach, his bones. He’s not doing well, declining every day. None of the drugs are working. He needs a miracle. This mom just needed to talk and I had the privilege of being the person to hear her story.

Why do I title this “The Curtain”? We all have a curtain. They can close us off from each other. If we can’t see, maybe we close off our ears. Be willing to keep your ears open for those who need someone to just listen.

I am sitting on the floor in front of the family library at LPCH. It’s ok because it’s Sunday and the library is closed. There are no corners to be alone in…and cry.

5 days into a probable 14, or more but not less, stay. My daughter is still very sick. Any improvement, however small, is still an improvement. I’ve been pretty strong, what else can I be.

There are people everywhere. Maybe they are looking for a place to be alone. Good luck with that.

Sometime soon, I will go back to PICU. It’s where I need to be. But for just a while, I need a corner…and some Kleenex.

We had clinic visits today at LPCH. So many special kids.  Some specialties you can see, some you can’t. Some “specials” are here with their parents and “normal” siblings. I see the very young special families and remember back when we first started the journey. It’s pretty scary, because even though there are others on the path, you really do walk it alone.

No one smiles today. Where’s the joy? Parents and others are preoccupied, trying to be “normal”. They fiddle with their phones, waiting to be called back to an exam room. For some, like us, the visit is routine and there have been no drastic changes in the child’s health. For others, it is the first time behind those doors with a specialist, and they have no idea what to expect.

There is always joy found with a “special”. That first time she sits up unassisted, even if she is already 3 years old. The first day of school. What parent doesn’t love/dread that day? First steps. Doesn’t matter if it’s alone or in a gait trainer. The face that just beams when she sees you, arms reaching out for a hug or to be held. Her own special way of giving a kiss. That first time of asserting her own opinion. Well, maybe not that so much.

One of my best friends calls my daughter Sierra Joy. Joy is not her middle name, but it’s because she is such a joy.