This isn't the first time that has happened to him. It used to happen a lot. Some of you don't know this, but before I was a mother, and apparently a blogger with a blossoming audience, I was in a band in the area called Gonzo's Nose. And frequently, especially when I was still performing with them, Lee would confirm to people that his wife was the girl in Gonzo's Nose.
So tonight, he said, "And guess what came next?"
"They asked if I was in Gonzo's Nose." It was a statement. A theory turned law in our lives. Except not this time.
"No. She knows your blog."
WHAT? People this is crazy.
But, given that I have this audience, and I know there must be people who wonder how Lee and I got to where we are with Connor, here's something I wrote a few years ago, until today shared only with a very few people, about the day that he was diagnosed, at 10.5 weeks of age. In the place where these previously private writings live, it's called April 23. The date of the diagnosis.
In the days leading up to April 23, 2004, I had an upswell of emotions ranging from anger, frustration, despair and fear. Connor had been showing increased behavior that was of deep concern to me. We could both hear him at night having what we called “episodes” but there wasn’t anything we could do to stop them, and the exhaustion was so complete now that trying to get up to be with him only compromised both of our upcoming effectiveness during the daytime.
When we’d been to the doctor at 6 weeks and I’d described the weird behavior I’d seen, they ordered an EEG right away. Then it had taken 4, almost 5 weeks to get the actual appointment scheduled. I went for a walk with Connor early in the week off the EEG appointment, which was set for a Friday. It was starting to be warm enough to do so without me overworrying or thinking everything. I was on the phone with one of my oldest and dearest of friends, and I said something I hated saying out loud, but hated even more keeping inside. I said, “My kid is fucked up and no one believes me.” There is nothing more I wanted at that time than to be proven to be the boy who cried wolf.
The next day, Lee told me that he couldn’t come to the appointment. I said okay, but got so unnerved about going alone that I finally reached out to one of my sisters who lived locally at the time and asked her to come with me. It may have been the best decision I made during those first weeks that Connor was with us and I was suffering from exhaustion, and from other things I couldn’t even conceive. And the day before the appointment, I had a visit from a friend, a doctor studying for his Boards. Connor had an episode in front of him. At the time he said nothing, but after the diagnosis he admitted that as soon as he saw it, he knew something was terribly wrong.
April 23, I bundled Connor up and into the car carrier, made the trip to the hospital, and found my way to the correct lab. This is no easy task. The hospital is large, and there are numerous labs where this test is done. But, I finally found it, and registered, and filled out the requisite billion pieces of paper. Then after a little bit, not very long, they showed us into a small room with a counter on one side, an adult size hospital bed, and an intimidating computer table with the machine that recorded the EEG on it, including the electrodes which were affixed to Connor’s head.
It took about 20 minutes for the technician to prepare Connor. Preparing a person for an EEG involves using a waxy, lemon colored substance to attach electrodes to your head and chest, then wrapping the head to keep them in place. He looked like a baby mummy. They asked me to sit with him on the bed, so that I could hold him through the entire test and nurse him if needed, so for most of the prep time I sat gingerly on the hospital bed, holding him and trying not to displace any of the electrodes.
They dimmed the lights in the room when they started the test. Sleeping during an EEG is preferred. I probably started to drift out too. It was dark, and I was snuggling Connor’s very tiny body into me - how could I not? My sister, the rock I needed, sat quietly in the guest chair in the room. The technician at this facility did not sit in the room with us, but went to a control room where the complicated patterns an EEG produces showed on screen as well as were recorded into the computer. Fewer than 10 minutes into the test, which I’d been forewarned took about 30 minutes, the technician came back into the room holding the telephone.
“It’s your pediatrician,” she said with no inflection or indication of tone. Taking the phone from her hand was difficult, because I knew right then that it was bad. It could not have been good for our pediatrician to call me in the middle of this test. I placed the phone against my ear, still cradling Connor. Dr. F said, “Colleen, Connor has a seizure disorder. It’s called hypsarrhythmia. The neurologist will be in to tell you a lot more than I can about this, but I’ll be there tonight so we can talk more about treatment.”
The only thing I could think to respond with was, “Wait. I have to stay? He’s being admitted?” Dr. F confirmed this, and apologized, and explained that we had to start treating this immediately. I thanked him, and handed the phone back to the technician who had been waiting in the corner by the door. Then I turned to my sister, and said, “I need you to do two things for me. Please go outside and call Lee and tell him to come now. I don’t care what’s going on at the office. Then call Mom, and tell her I don’t know much about what’s happening yet, but that I need her to come. Don’t wait for her to ask or offer. Tell her I need her to be here as soon as she can.” Erin immediately stood up, headed out the door, and left me there, in the darkened room by myself with my baby, wondering how in the world I would ever know what was normal again. At this point, I hadn’t shown much emotion at all, and still I managed to keep it together. It was me and Connor right then, and the last thing we both needed was for me to fall apart. Despite the fact that he was 11 weeks old, and had some unspellable seizure disorder, I was all he had at the time and he needed me to be strong.
There are events in your life that push your trajectory in directions away from where you thought you were headed. You go to college to study chemistry and find that your true interest lies in architecture. You get a job and have to move away from what you know. You meet a guy or a girl and something in them creates this spark that moves you closer to who you are meant to be. You have a baby and your life moves to the side a little bit again, challenging you to adjust, and to learn how and when to draw a line in the sand for someone else. But this? This is the one that no one preps you for. No one is going to sit you down and say, “Okay, so you are pregnant - let’s talk about how you will handle things if your child is blind/deaf/Down Syndrome/etcetera, etcetera, etcetera.” You are on your own, even with all the services out there to help you with this transition. For a little while, you feel completely alone, even with your spouse. They are alone, too. There is mental processing to do, and emotional processing, and then there is the day to day getting through and making sure that you have fed and cared for your poor stricken baby who did nothing to this world. You have to make sure you are feeding yourself, and that you are doing stupid, mundane things like showering and sleeping and not living in filth, despite the fact that all you want to do is exactly that. You want to stop showering, and forgo regular check-ups, and who cares about grocery shopping? And on top of that, despite the fact that you want only to hold your baby all the time, you have to talk with your spouse. Or re-learn how to talk with your spouse. The reality is that when Connor was diagnosed, the national average for divorce was about 50%, but it was 85% for families with a special needs child. It was 90% for families with a special needs child who passed away. Ninety percent. I did not want to be in that group, but for months I was convinced I was on my way. We stopped speaking, unable to process our anger and grief in a reasonable and adult way. The reality is, when something this horrible happens, acting like an adult mostly goes to the wayside. You are far more focused on survival for you and your baby. Everyone else is an impediment to you and the baby making it. So you close them off.
When she returned, the test had just finished. She said, “Lee’s on his way, and Mom and Dad will be here later this afternoon.” The technician removed the electrodes from Connor’s skin and tried to clean up some of the stickiness, and then showed us to a small treatment room where the on-call pediatric neurologist would come speak with me. The doctor came in, and sat down, and proceeded to practically yell this to me, “The Baby Connor is very sick. He will either have CP, be severely retarded, or die.”
So we were off to a good start.
Still I sat through her explanation of his non-medical-terminology diagnosis, which is Infantile Spasms, stony-faced and unemotional. I’ve always been pretty strong in emergency situations. I am not sure why, but I’m okay with turning off the emotions to deal with something catastrophic, but only for the immediate occurrence. After the fact, I usually would break down. We talked about the disorder some, but I knew that Lee would have a lot to catch up on so I saved most of my questions so we could learn about this together. She said she had already contacted Admissions and was waiting to hear from them regarding a room assignment for Connor. And me, of course, but I didn’t get a bed so I didn’t actually count. She took us down to the main lobby to wait for someone to come get us to go through the Admissions process, and almost immediately after we got there, Lee came blazing in through the automatic doors. Erin was waiting there for him, and pointed to where I was standing with Connor in his car seat/stroller combination. I don’t think he ran over to me, but it felt like it.
At the point of his arrival, I wasn’t alone anymore in this, and I felt freer to be emotional. I started to tell him the terrible things that the doctor said to me, and he was beyond angry. Can you blame him? No one wants to believe that. But then the doctor came back, and I introduced Lee and she told him the same thing, “Baby Connor is very sick. He will either have CP, be severely retarded, or die.” She then proceeded to tell us about the first course of treatment, which is a daily injection of a steroid named ACTH for 4-6 weeks. After she finished speaking with us, Lee asked me, “Why is she yelling at us?”
At that point, we were admitted and given a room assignment, and escorted to the pediatric ward. We started to settle in, and I said to Lee, “I need to go home. I have to go get things for me and for him since we’ll be here a few days.” Away I went, heading to the car in a bit of a daze and driving as calmly as I could muster back to our home. I gathered up clothes, books, my breast pump, and probably some other things I can’t remember any more. On the drive back to the hospital, I called the head of my office. I was just over 2 weeks from being back from maternity leave, and suddenly I had a son who needed daily injections. My mother was coming to care for Connor until we got him into daycare, and I could not ask her to give her grandson injections. Not because she couldn’t do it - she would do anything for him. I couldn’t let that be her responsibility while I hid from it. So I called work and said “I don’t know a lot yet, but Connor has a seizure disorder and I need to extend my leave.” I didn’t have the capacity to frame it any other way than the bald, stark truth. The head of my office said, “I’m so sorry. We’ll take care of it on this end. Please keep me posted.” It may have been the nicest thing I heard all day.
Lee called me while I was on the road - Connor was on my insurance and I’d neglected to leave my card with him. He needed the details for the social worker the hospital had assigned to us. Social worker? Turns out this is standard operating procedure with hospitals and patients and families with big diagnoses. He said, “She’s trying to find ACTH for us. It’s hard to locate, and it’s expensive.” My heart, already low, plummeted even lower. How would we afford this? “It’s $1000 per injection.” I may be bad at math, but I know that 6 weeks is 42 days, and 42 times $1000 is $42,000. Holy shit.
My next thought was ridiculous. I thought, “We have to ask the band to do a benefit for us.” Lee, as it turns out, was thinking, “We have to sell the house.” Neither proved to be true. I arrived back at the hospital, worked my way through to the room, and the social worker came back. She said, “This is the best insurance I have ever seen, and I’ve been doing this 18 years. We found a vial of the steroid here, so treatment will start today. It’s the only vial on the East Coast right now. I’ve also located a company that has some on hand, and they will be contacting you to arrange delivery for home administration. You’ll only have to pay the co-pay.”
That was the only good thing that happened that day.
I called Connor’s godparents to let them know, and Lee stepped outside to give his parents more information. To be honest, I don’t really remember our parents coming in that day, but I know they did. When visiting hours ended, I was there with Connor, all alone and unsure what to do. He’d spent most of the day prior to his first shot of ACTH having frequent and intense clusters of seizures. Once the nurse gave him the shot, he calmed down. Dr. F came in to the room around 9 PM. He looked pretty wiped. I expect I did as well. We sat there together and talked about impact, treatment, short and long term prognoses. I didn’t know this at the time, but we had gotten incredibly lucky when we went to the pediatric practice and interviewed with Dr. F. The practice he is a part of assigns one of the doctors each week or month or whatever to do new patient interviews, and the day we were set up to come in, he was the on-call guy. We met with two practices, and we liked his practice better. He met us alone, whereas the other practice had a large group meeting and that was all. Lee liked him specifically because he wore Doc Maartens. I don’t normally pick medical practitioners based on cool shoes, but you can’t argue that he was smart to wear them, what with the Air Soft Soles. And as it turns out, this pediatrician has an uncommonly high percentage of patients with special needs. We could not have been backed up better.
In any case, we talked about medications a lot that night. He told me that not every child responds to the treatment, and that it was possible that we would need to look outside the country for his medicine if that turned out to be the way he responded, or didn’t respond. I remember telling him that I was more comfortable with Canada than Mexico. I also remember thinking it was extraordinary to be sitting in an American hospital talking about willfully importing drugs that were not FDA approved.
One thing I had noticed, though. Since he’d had the injection, Connor hadn’t had a single seizure. And when he did have one, and it was only one, it wasn’t as intense or as long and was about 4 hours post-injection. And that was the last full-blown seizure he had until 2011 .
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