A Week with My Son, Javier

When Javi started falling asleep while we were trick or treating for Halloween, we knew something wasn't right. It was a cold night but not too cold, and he just couldn't get warm and he couldn't stay awake. He just wanted to push his head back as far as it could go and then keep his eyes closed, like the light hurt his eyes....

We went home immediately and let him rest, sleep a little, and he woke up an hour later, had some candy and seemed a little better. He said he had headaches and that he didn't feel good, but there was no cough, no fever, no other things that usually go with the flu, or a cold. Trista and I got that familiar feeling in the pit of our stomachs, like we were going to be going through something really hard again.

Javi was born with spina bifida, and he can't walk. He has poor balance at times, and it is difficult for him to do crafts or write or do artwork. He has a v.p. shunt, because he has hydrocephalus, which is too much cerebral spinal fluid in the brain. Usually it flows and bathes and is absorbed along our spinal column, but for him, it doesn't work that way. So the shunt helps that to be okay.

Except when it doesn't. Sometimes, they stop working. He had problems with it five years ago, and he had it revised. Which meant surgery, and it was hard for us, but it worked out and we made it through. He was a lot younger then, and it was touch and go. But the neurosurgeons were really good and everyone took great care of him and it was done quickly when they realized that it was needed, so he was able to recover with no problems.

In this current case, however, he didn't show all of the signs of shunt failure that indicate that that was what was happening. He would sleep through the night and have periods of feeling better. He had a huge appetite, which is almost the opposite indicator. When he wasn't feeling better by Monday, we took him in to see his pediatrician and he said it looked like he just had a virus that contributed to some migraines. "It could be ten days before he would feel a lot better, but that it didn't seem anything more serious than that." We tried to breathe a little easier, but it was shallow breathing. I'll admit it.

I tried to work through the days that followed, but it was really hard. I couldn't concentrate, and I hated leaving him with Trista, worrying that if something were to happen, I wouldn't be there to help her. He is getting big now, about 55 lbs, and she has trouble lifting him, so I tend to stay close throughout the day, so she doesn't hurt her back.

On Thursday, he was worse, and the Tylenol we were giving him wasn't touching the pain. We packed some things because we knew we were taking him in to the hospital and there was no telling what might happen or when we might get out. Javi was feeling so out of it he didn't really have time to get nervous or worried about it. That is the good thing about being that sick, I guess. You don't have time to get freaked out. Unfortunately, neither Trista or myself were sick, so we could go through the full range of emotions.

They took an MRI when we got to the local hospital here in Cooperstown, and then they sent us to Albany Med, where they have a Children's Hospital. I rode in the Ambulance, and Javi kept talking about his brother Matthew coming to see him, and wanting to know if he could have chocolate chip pancakes when he got home, and would he be out of the hospital in time to see his sister's play. It was hard to ride with him and comfort him, holding his hand, but I know it was harder for Trista, following us in the car. I could tell she was crying the whole way.

We got to the ER and eventually got admitted by the early evening. The neurosurgeons wanted to find out if he had pressure on his optic nerves, so they had a young doctor come to test him, carrying a huge black bag with her portable lab equipment. She should have had a cart, honestly. She checked his eyes, from top to bottom, and said he seemed okay.

I don't know how to describe being in the hospital for those first few hours. It is like holding your breath, constantly, and waiting endlessly for whoever was trying to figure out what was happening to come by and talk to you. The nurses checked him every fifteen minutes, so he wasn't really sleeping, and we were on the edge of our seats, watching for signs of improvement, then offering that info to the doctors and nurses. They wouldn't let him eat, because they were worried that he would need surgery, so Javi kept talking about food in a voice that was unusual for him. It was kind of flat, I guess, would be the best way to describe it, without the usual hills and valleys of expression. Very different for our little guy, who is so vocal and talkative most of the time. I could tell it was driving him crazy to be so hungry, but he hung in there.....

Finally, they let him eat, and said they would just observe him for a while to see if they could determine the reason for his headaches. Javi felt a little better, too, and after eating, he was able to hang out a little and even watch TV. But he was really tired. We were officially admitted, and headed up the the Pediatric Intensive Care Unit.

The doctors didn't want to do the surgery unless they could tell for sure that it actually was a shunt problem. After all, who wants to have any surgery on the chance that it might not help you? We sure didn't, but on the other hand, it was hard to have him feeling so bad for so long.... and not know how to get him help to make him feel better.

I walked through the hallways, so emotionally raw, trying to think of something we could do to help him. Trista called a medical intuitive, which was marginally helpful. We were just there with him, all of the time, so he never felt alone. We took turns sleeping after a while, because by Sunday, we were wiped out. Still nothing conclusive.

I'd head downstairs to get food from the cafe, and I could see other parents or sons or daughters, moving in a daze, just trying to breathe and get through each moment. I tried to find a way to smile at them, even as I knew my face was probably just as transparent. I saw doctors and nurses and adminstrators moving about, quickly getting food before heading back to work.

I admired their ability to do this kind of work, and to be around people in their greatest moments of need. Life and death, pain and suffering, healing and wellness, all rolled into one big series of buildings, with teams of people trained for years to be the best, the smartest, the most attentive to the smallest details, because everything hinges on really helping those in need.

I saw the many floors, with hundreds of people, with hard jobs and simple jobs, to keep this whole place clean, in top working order, organized and in sync. I was amazed and grateful that this team was working to help my son, as he lay in pain, and I was helpless to do anything for him except hold his hand, or get him juice or whatever he needed. I didn't know what to say to these doctors and nurses, all of whom seemed to be ten years younger than me, but fully competent and able and attentive to my son's needs. They were so caring!

When we realized that there was a wireless connection in the hospital, I sent out a newsletter about our programs but with an update to let our greater Hawk Circle community know that we were there, with Javi, in the Pediatric Intensive Care Unit. We didn't have much to share about it, but it just felt important to let everyone know that he was there and that we were there with him and that we were doing everything we could.

Your responses just blew me away. They came back, one after the other, and I would tell Trista and she would ask me about who each person was if she didn't know already. Javi would ask too, and mostly he just tried to sleep. I felt like it was something we could do, I could do, which was to ask for help, and to let everyone who knew Javi be somehow, in some small way, be connected to him.

Javi doesn't go to school, and he doesn't have a lot of friends his own age. Most of his community of friends are the people of Hawk Circle, our community, who get to see him in a workshop, for a little while, or at the camp, or during our Earth Skills Semesters. He has people who take care of him, who provide speech and physical therapy, occupational therapy, and he has his family, which is scattered over the country usually. Cell phones aren't allowed in the PICU, so it was hard to stay in touch with everyone about how he was doing and not leave his side.

He got worse by Tuesday, and they decided to do surgery. That was a long two hours, let me tell you. On one hand, it is the worst feeling in the world to know your son needs surgery. On the other hand, it is better than sitting there, watching him get worse and fading from the world. So it was good, and scary and bad and everything, all rolled into one.

There were people waiting for sons, daughters, uncles and moms, all in surgery already or just going in. Some were just getting knee surgery, something that was needed but not life-threatening, and I was jealous of how easily they seemed to talk, how relaxed they were. I thought of all of the hospital shows, like Grey's Anatomy, or ER, or even Scrubs, where the doctor comes out and says 'I'm sorry... we did everything we could, blah blah blah' and I just couldn't bear to think of living my life without my son.

On the other hand, I did know that he was strong, that he was full of light, and that he would be okay, no matter what happened, because we are all beings of light, and this world is but one of many... But I still worried about him, being so young, and having to deal with all of this trauma and drama, with all of the other challenges he has to face, each day.

But each thing I thought just made my head spin, so Trista and I just tried to wait, and be present for each other and breathe. Jesse, his sister, came to the hospital and waited with us, and we all tried to just stay calm and comfort each other in this impersonal surgical waiting room.

The short version of this story is that the doctor came out and told us that he did great, the surgery went very well, and Javi was out of any danger and seeming to recover very well. We rushed upstairs to see him and he was sleeping. He was wiped out. Days of no sleep, just painful, crushing headaches, were finally relieved, and this blissfull sleep lay on him like a soft cloud. His head was shaved on one side, where they put the new shunt in, and covered with bandages. His small body smelled of the odor of the anesthetic, but he was resting, with real rest that was healing and good. We talked when he woke up, and his voice ws back, tired but back, and I just lost it. I was so grateful to him, for being so strong, and to the doctors, and the nurses, and the hospital employees, and to Trista, who was always here for him, and me too. I felt sick to my stomach, I was so happy.

I realized that I hadn't slept really either, and that probably made me more emotional than usual, but I didn't care. I met my mom, who flew in from California, and she took watch with Javi while Trista and I fell asleep in the Parent's Room. (Note: No one actually sleeps there, so they decided to get the most uncomfortable beds!)

Javi got better each day and we were soon home, but with a new appreciation for every day, for every moment with him and with our family. I was never so happy to sleep in my own bed, and make a fire in the woodstove and cook our own food and be together.

We still ask about the boy who was in the room across from ours, who had been in a car accident and didn't know who he was. He kept asking the nurses if he was in jail, and what happened, and he needed a lot of help from his own injuries. We all knew that while we went through our own trials, we were still going home. We were lucky. And grateful. And we prayed and sent good thoughts to that young man and his family.

The prayers and e-mails and good messages really meant everything to my family, when we were about as low as we could be. We could feel that support. I don't know how, but we could. It comforted us in our time of need. And I am thankful to everyone for it.

I could go on and on about things I saw, felt and heard but I think this is already the longest blog entry I have ever written. So I will stop. But there is a lot more I could write, believe me!

If you ever need help like we did, just let us know, and we will do the same. I hope you never need it, but if you do, we will be there. All of us. And Javi knows what it means now, too.

Somehow, I think he always did.