If you were hoping to read a positive entry from me today, you should click on to another URL. I’m dour and angry, resentful and dramatic. I usually try to dig deep down and find a bright side to share with friends and family, to keep everyone thinking good thoughts. But today was a bad day. My little girl is suffering and I’m tired of trying to help others feel better about our situation. I want Jordan to feel better. I want my beautiful, charming, brilliant little girl to jump off of that hospital bed and come running back home. Sorry, folks, this journal entry is not part of Larry’s optimistic library.
Last night, before I left the hospital, Jeanette and I began noticing a change in Jordan’s behavior. She slurred more words together than usual. She kept squinting her right eye, like she did before she got the shunt last year. Sometimes she’d get lethargic and stare at a fixed point. Occasionally, she’d ramble on incoherently expressing random ideas. And she started shifting around in her bed, as though she couldn’t get comfortable. Sometimes the movement seemed a little involuntary. Of course, when we asked her how she felt she would always reply, “fine.” We get the sense that if she wasn’t feeling well, she wouldn’t tell us anyway. Telling us might make the doctors want to work on her more, and she wants to get back home.
When we noticed the change, we told the PICU staff. The problem is that Jordan looks good, on the surface. She still smiles, laughs and carries on a conversation. When doctors see that, they find it hard to believe things are getting worse, especially when she seems far better off than most of the other patients in the PICU. I’m not saying they ignored us, but I do think they decided to pause to see if it was just a temporary issue – a side effect of surgery or medication.
This morning, Jordan seemed a little better. She was talkative, but the slurring was still there. Every time she got up to use the restroom she got very dizzy and needed to lie down to recover. She also got a little nauseous. We continued to watch. A neurosurgeon came by to examine her in the morning. When he came by she was alert. But by the afternoon she was reporting a headache. I’d had it. My baby’s condition seemed to be obviously deteriorating and all the team was doing was giving her Tylenol. I went on the attack. I called her regular neurosurgeon’s office and demanded that he look into her case. Instead, I got a call back from the neurosurgeon on call. He had the bedside manner of Donald Rumsfeld. I don’t care how gifted you are, if you can’t talk to a parent in a compassionate way, get out of the pediatric business. I found this doctor to be an arrogant, condescending, defensive beast who was far more interested in winning an argument with me than showing any genuine concern for my daughter. After I insisted, a CT scan was orderd to ensure that her shunt was not malfunctioning. The scan looked normal, but Jordan was anything but.
Before the symptoms overwhelmed her, we played a game of Candyland and joked around for awhile. Things seemed alright. Then she needed to use the restroom. Again, she got very dizzy, unable to stand on her own. When she got back in bed she began twisting herself into awkward body positions. We had to help her get her bearings straight. She started whimpering sad little sounds. We asked her where she was hurting, but she refused to answer us – just more groans. Finally, she pointed at her tummy. When I looked in her eyes I could tell she was fighting something. She was concentrating and she was uncomfortable. She vacilated between wanting mommy and daddy to hold her hand and pushing us away. After several minutes, she rolled over and drifted off to sleep. Her marvelously expressive eyes were glazed. Her eyebrows were furrowed. She was still my beautiful girl, but the glow that she normally wore with such grace was faded.
I snapped. I became useless. I had to leave, feeling guilty for leaving my remarkably strong wife to stay by Jordan’s side.
Everyone tells me to think positive thoughts and to pray. It’s getting harder and harder to do that. I understand the premise, but I’m not feeling very positive today. In fact, I’m mad at the world. I’ve had it with positive thinking and force of will. In that hospital room lies a wonderful light – a gift to the world. All her life she has touched others and brought joy and happiness to people – and now she’s suffering. And the worst part is that I know she’s going to do more suffering. No matter how much positive thinking I do, I can’t ignore the fact that the inevitable treatment she will receive is going to debilitate her and dim the lights even more. I just didn’t let myself imagine that in addition to the poison she’s about to consume in order to save her life, she might also suffer from further cognitive deterioration. I don’t want to lose my little girl – in mind or in physical life.
I know she’ll have good and bad days. Today was a bad one. I love both of my children equally, but I love them in different ways. The love Jordan and I have shared has always been flirtatious and whimsical. We dote on one another. She trusts me to make her smile and protect her from bad things. Today, it was a challenge to do the former, and there was nothing I could do to help her on the latter. I wish I could take it all away and bring it on myself. I’m sure I’m one of many fathers who would trade places with his child in a heartbeat. But I can’t. And there’s nothing anyone can say or do to make me feel any better about that. I know many of you will try to say something that will keep me focused on positive stuff – and maybe tomorrow I will come back to that point of view – but tonight I am not buying any of it. I am screaming at the skies and letting the Irish in me burst onto the surface. For now, all of of my wars are merry, and all of my love is sad.