It has now been a little more than a year since Jackson was diagnosed with lissencephaly. I can still remember the day as if it were yesterday. It was April 11th, 2012. We had an appointment at Children’s Hospital for an EEG. That is a test where they hook about 30 electrodes up to the head to get a picture of the brain’s electrical, ie neurological, activity. Jackson was just over six months old at this point, had started to show some slight developmental delay, and had just started to have spasms, although we didn’t know what those were yet. Santina and I were totally expecting to have the tests ran and then go to work, as my parents took Jackson home. That didn’t happen; we ended up staying at the hospital for over 36 hours.
After the EEG, the technician, an affable Russian the size of a small mountain, said that he had to go “back up the tests.” After 15 minutes or so he walked in with a neurologist. Bad sign number one. The neurologist ordered an additional EEG, this time after Jackson woke up so that the test could document a spasm cluster. After that test, we were admitted to the in-patient part of Children’s. Bad sign number two. As an aside, this neurologist spoke like the “low talker” from Seinfeld. I felt like Jackie Chiles asking for a microphone for this guy. Quite the juxtaposition to the boisterous tech.
When we were admitted, an MRI, some sort of spinal exam, and an ECG were ordered for Jackson. The really awesome part was that Jackson was an add-on for the MRI, scheduling-wise. This meant they would fit him in when able. And since he had to be sedated for the test, it meant no food or drink until the test…which ended up being about 12 hours later. As any parent knows, six-month old children who don’t eat or drink for 12 hours are super content and quiet. We tried calling various people who may have influence at Children’s (wealthy donors, duh) but to no avail. We eventually did get the MRI and were brought up to discuss the results. While on this walk, the doctor mentioned that they weren’t going to do the spinal exam thing, which I found strange. Bad sign number three.
We sat down with our neurologist (not the low talker), and were told that Jackson has lissencephaly, that he is likely to never walk or talk. There is no good way to give or receive this news. All you can really think is “What the fuck?’ (apologies for the language, as I know my Aunt Jane is reading this) I believe there are formal steps of grief with pedantic, clinical names for each step, which I will avoid here. For me, it was 1) really sad 2) really angry and then 3) realizing that things aren’t really that bad. Plus, I am only grieving the loss of expectations, nothing more.
After the MRI, while Jackson was coming out of sedation, he had his first bona fide seizure. Pretty much the last thing I needed at that point. After a sleepless night spent thinking horrible thoughts (the first of many), we got a lot more information on his condition and prognosis. Jackson’s condition is both quite rare and serious, which increases the number of medical professionals that need to or want to see him. At one point there were 17 people in our room, from doctors to nurses to social workers to who knows who else. We were finally discharged with a slew of appointments scheduled over the next few days, weeks, months, etc.
When we got home, our family and friends were so great, taking care of pretty much anything we needed. A special shout out to Sara Tawil Hermanson who really went above and beyond. Also to Barrett Spraggings, Rob Donald, and Oliver Davidson who travelled great lengths just to show their support; it was much appreciated.
Now, over twelve months later, things are not nearly as dire. In fact, they are not dire at all. Jackson is happy and healthy and the light of our life. Our family and friends are still a great help and we are still eternally grateful. In business, the quote is anything is possible with time and money. In life, the quote should be anything is possible with love, a great family, caring friends, a top-ranked hospital nearby, a little money, a great nanny, and hope. Or maybe just anything is possible with love. Let’s go with that.