Relative

Though it's often frowned upon, I've often applied the concept of relativity to my day to day life. It's intuitive, after all. I make x dollars. You are a member of the 1%. While you're certainly much richer than I am, we're both doing well compared to some. This principle is often a useful source of perspective. Applied correctly, it makes you appreciate what you have and value the things you do have. All too I've thought that we- myself no less than others- suffer from an ill-advised application of this principle. The tendency is always to notice what you lack, so often than you lose sight of what you have. It's a trite message and one I've always thought is overdone around Thanksgiving and Christmas. In the right circumstances, I think some healthy jealousy is quite motivating. There's no reason to go to do well in school or work hard if you don't want better.

Lately I've felt a lot of the wrong kind of jealousy. I catch myself watching other people's children's grow in a steady progression on facebook, while I trudge along with the same pictures, James frozen forever in time. They're learning to walk, talk, and making delightful little videos. I've blocked a few feeds. Just like James would be doing if he were here. I am jealous of the ease that seems to bless them, the casual way with which they go about their days, blissfully unaware of words like rhabdoid. Mercifully ignorant of the economics of cemetery plots and monuments. As the season turns and we drift farther and farther away from the long summer of James' illness, the fixed nature of his passing becomes even more unavoidable.

It's not that I can't, or don't want, to talk to people about their kids. Quite the opposite. I'm always pleased when people decide to have kids and want to talk about them. James was the best thing that ever happened to me, and the ending has nothing to do with that. It's great to talk to people and see how they're doing and their kids are doing. If anything, I get the impression people who know about James are less comfortable talking about their kids with me, perhaps because they fear that I won't take it well. That's not true. (Though if you make direct comparisons, as a few people have done, between your child's trip to the ER for a sinus infection and my son's terminal brain cancer we might have a problem.) I particularly enjoy talking about James. To do otherwise neglects the best part of his life, the part that had nothing to do with cancer and everything to do with his bright smile. It is important not to let the memories of James' death obscure the more important experience of his life.

Since he died, I've met a few people who didn't know. When asked if I have children, I try to give the same answer "I had a son, but he passed away." I tried saying "I don't have children" once or twice, with horrific results, including one person at a lawyer function who commented that I'd clearly looked at kids, looked at my job, and decided kids were too much of a commitment. "I have a son" is equally unhelpful, because there are no questions about that son I can answer in the present tense. So I've elected to go with the truth, because I think it's important to acknowledge and celebrate him.

So it's not a particular sense of jealousy I feel towards the individuals. I'd never wish what happened to James on any family. It's a more generalized, relative sense of jealously for the life I'm not living. I'm missing a hypothetical. My life would be more like X if James were alive. If James were alive, X would be happening. Relative to my current situation, all of these things feel like an improvement, and I feel worse because of it. I remember feeling this way in the hospital, jumping right through the ER waiting room on each of our return trips from home, jealous of all the families waiting for care, because it meant their children were in no danger of dying before their wait ended. It's a frustrating, useless feeling, but it's there.

I try and sometimes succeed in telling myself that there's nothing to compare to. James is James, and I wouldn't trade him for anything. The relativity I should focus on isn't on the life I'm not living but on the life I did- how blessed I was to meet my son and to know him for the eight months that I did. Most of the time, I do. Sometimes though, it's hard to look past the easier analogies. Maybe next year, when I notice the seasons less.

Day One

From Matthew:

Before I forget all of this I want to write it down. The last 48 hours have been a whirlwind. Wednesday evening we took our son to the hospital, to deal with what we assumed was some kind of superbug.

Tonight, our son is in the PICU at Texas Children's. Today he had brain surgery, the second neurosurgical procedure he has had in as many days. Kara and I have slept less than five hours in the last the past two days, pockets of one hour naps sprinkled through the night and the day. Things still feel unreal, like I'm dreaming and someone, sometime, is going to wake me up.

So I wanted to write down the timeline, to keep things straight.

Wednesday:
6:00 pm: Kara finishes at the peditrician's. James' sickness is "unusual" so she's sending us to Children's for observation. No one is worried.
7:00: I arrive at Children's after stopping by the House to pick up some things. I go to the room but no one is there- they'd assigned one and put it in the system before James and Kara got there, I go to admitting and of course just miss them headed in.
7:30 We meet up in the room.
8:00 James is seen by the intern. The intern notes that James appears to have a stiff neck. We are surprised, and worried he may have meningitis. The resident mentions hydrocephalus as a possibility. We're upset, but it's a long way away. A plan is made to send him for a CT scan.
8:20 We go and get the CT. We're escorted by two paramedics who basically walk after us since I'm carrying James. Kara jokes that they should be called "ambassadors" of the hospital. They say we made their day. Everyone is laughing.
8:45: James gets his IV. The IV team at children's is efficient and very nice, we're pleased, as he had a difficult time getting an IV a few days before at Medical City. James still has that IV.
9:15: The resident comes in and informs us that James has hydrocephalus. We are very concerned, ask a lot of questions. The idea of a shunt in his head forever seems daunting.
9:45 We meet with the neurological PA who talks to us about his scan. Compared to a scan he had 2 month ago, this one is not good.
10:15: The neuro PA comes back to inform us that James' scan shows a "mass" of cells, which may be nothing, and may be a tumor. We are devastated, but we pray for mere hydrocephalus. Superbugs are a welcome, even preferred cause of anything.
10:45: Per the neuro PAs instructions we move to the neurological ward.
11:15: Orientation finishes in neuro. The PA comes back to talk to us about hydrocephalus and to check James out. His heart rate stops dropping, below preferred levels. The PA orders us to be moved to ICU.
11:35: The PA talks to us about possibly putting in an EVD (external ventricular drain) as a temporary measure to take care of James' hydrocephalus, mentions we may have to of conditions worsen.

Thursday

AM

12:10: We arrive in the PICU, our new home. We meet our RN, who has been with us since and is fantastic.
12-9: We enter into a holding pattern in the PICU of uncertainty- waiting to see if James will become critical enough to justify the EVD. James is fussy, and we now know, in a lot of pain. We never know exactly when anything is happening as we're holding until the morning. We know that the results of an MRi will be critical to determining our future course. We pray. We hold James' as it's the only way he will stop crying. There's a need to get blood and he won't bleed enough. We see our friends from the IV team again who put in another IV. They wonder how on earth we went from general admission to the PICU in 4 hours.
9:00: We see our neurosurgeon and his team. The explain that the plan is to put in the EVD and then proceed with the MRI. The EVD will buy time to consider the next steps. I comment on his suit, which is a very expensive and very aggressive union of pinstripe/plaid. It looks like fun.
10:00: James gets a breathing tube and the EVD procedure begins. I want to stay to watch. it is hard to imagine leaving him, even though I know I am powerless. I am terrified something will happen while we're gone. They kick me out. I'm thankful.
11:30: We return. The EVD procedure went well and James' pressure is improving. We are thankful and wait for the MRI.
12:15: James goes to the MRI. The staff is wonderful and he seems well. He has to go under for the MRI in order to keep him still.
1:30: After a hurried (literally- we ran from the cafeteria back to the room) lunch, we receive a call that the MRI team has ordered additional pictures of James' spine. We are not encouraged, and afraid of why they need information.
3:00 James returns from the MRI.
4:00 Our neurosurgeon returns. The film he puts on the screen is entitled "8 month old with hydrocephalus and brain tumor" Kara immediately asks about the tumor. I know I asked questions but I remember very little of the next few minutes. I couldn't believe it. I remember sitting at James' bed and holding his hand, hoping we'd wake up. The plan is to treat the ydrocephalus with a ventriculostomy and get a biopsy.
5:00: Kara, who is infinitely more wise than I, institutes a no-crying, all positive attitude in James' room. It is ok to cry. But outside. James is extubated, and seems more himself. He is visibly more alert with the pressure relieved.
6:00: I lock myself in the bathroom and cry uncontrollably for ten minutes straight, curled in a ball in the corner. I wonder when we wake up. I curse god, myself, medicine.
8:00: James starts to smile and play. It is a HUGE relief to see him so happy. He is such a joyful boy, he always has been.
9:00-12: James takes a well deserved nap before remembering that he is awake, and for the first time in who knows how long, not in agonizing pain.

AM
12:00-8:00 With limited interruption, James plays. Even though we are exhausted, it is amazing to see him so happy. He's grabbing at his lines, very disruptive. We don't care. We're relieved to have our wiggeworm back. The nurse says that EVD patients don't often behave that way. As always, James is a trendsetter.
8:00: We hear that the surgery will be at 9.
9:50: Anesthesiology arrives, a sprightly grandmother who likes to share, which is nice.
10:10: The surgery is waiting on consent.
10:50: Our neurourgeon arrives to provide consent forms. We listen. They take James back and we follow as long we can. We kiss him goodbye and save our tears for when he gets rolled away.
11-2: We wait on the results of the surgery. The OR calls several times and lets us know what is going on. The surgery appears to be proceeding smoothly.
2:30: James returns to us in the PICU, tired and a bit groggy but otherwise well. His cranial pressure is much lower. Our neurosurgeon provides his report- the surgery went well, the ventriculostomy was an apparent success and they obtained a biopsy. The biopsy confirms that the tumor is not one which can be treated with merely chemo or radiation and will require a surgery to remove it over the weekend. It is a blue-cell tumor- either a raboid (sp) or a blastoma or some sort. We expected this, so much of the shock of yesterday is worn off. We try to have faith in our plan, god, and our little boy.

We are exhausted. Starbucks is a constant companion. There's one in the building. I cannot express in words how grateful we are for the loving and faithful support of everyone. I never knew how many friends we had until now. James is loved and blessed in more ways than I can imagine. Thank all of you, always.