In the last year I've learned about the worth of a man, how big a burden a family can bear, and the extraordinary lengths a mother will go to save her dying child.
Last July, I was fired from my dev job. This was a shock to me as I had been seen as a high performer at my last job. Well, my last job before my last job at least. I was scared, confused, and really down on myself after this happened. I'd quit the job before because it seemed like a toxic environment. My wife was pregnant, I applied for unemployment which was embarrassing and felt pretty bad. Honestly the place was pretty bad but I tried to hold on because of my wife's pregnancy and I knew it would look bad to lose/quit two jobs back to back like that. In retrospect I would just leave randomly at 3pm, "work from home" (take naps), and was overall a pretty terrible worker during my tenure there. After losing that job, I didn't just "bounce back". I got depressed. I thought about what was different compared to my jobs before, and came to the obvious conclusion it's the adderall, stupid. Taking adderall turns me into a super performer. It makes me really, really good. It also makes me feel like I'm "broken" in some way that has to be fixed by a drug. I'm simply not a great developer and can't achieve the intellectual goals I have for myself without taking it paired with a mild anti-anxiety medication. Eventually I decided to start taking it again after a year and a half without it. I just got my performance review at work and got glowing praise from my manager. It makes me feel good. It makes me get rewarded financially. It's also interesting because there's two groups of developers that have very, very different opinions about who I am and what I'm like to work with. The first class has worked with me drug-free. These people don't much care for me. I'm forgetful, get distracted easily, will constantly be away from my desk walking around, if I'm even in the office. The other group have worked with me and see me as someone who can solve any problem they throw at me. I'm getting the reputation as the one to give complex and difficult problems to. People think that other people are immutable and can't change, too. Both groups have fixed about me. If I stopped adderall tomorrow my coworkers give me the benefit of the doubt, feel that if I'm stuck on a problem for a long time it must be because it's complicated, not because I'm astutely avoiding solving the problem. The other group just thought I was a total loser. I hated it, because they were right. I know what I'm worth, and what makes me worth that. It's not all me.
Last October, bleary-eyed and exhausted at five in the morning, my wife gave birth to a beautiful baby girl via c-section. The labor had not gone well. Her water had broke and there was meconium (baby feces) in the water, which is a sign that the baby is in distress. We rushed to the hospital and my wife labored for eighteen hours, screaming "just cut her out of me, something is WRONG!!!". The doctor ignored her and encouraged her to keep pushing. Finally, he relented and a Cesarean section was performed. The nurses took her away. Someone told us "Your daughter has myelomeningocele. Listen to me. Don't Google it. Just get some sleep.". So I did. I remember waking up to the children's hospital ambulance crew asking my wife to sign the documents to transport Lucy to the hospital. She had been born on the same day as her namesake, her great-great-grandmother. We didn't have Thanksgiving last year. We didn't have Christmas last year. There was only the endless march of days at the hospital. I accepted my new job the day my wife went into labor. I just had to deal with it. What else could I do? Throwing myself into the work certainly helped me forget that my daughter might never walk, that she probably won't be able to control her bowels, that she'll need to catheter herself whens she's older to prevent her kidneys giving out. At a happy hour, I mentioned to some coworkers about her condition. A gray-beard developer took me into a back room and got really serious. For a second I thought he was going to fire me, honestly. He said "I want you to know I have spina bifida. Everything is going to be okay." That's one of the nicest things anyone has ever said to me.
In January, they told us Lucy was going to die. There's a malformation of her brain stem, the part that controls unconscious breathing. When she got upset, she held her breath. It's a horrific thing to see, your child turn blue. Then they turn white. She looks dead. As a gentle snow fell outside, my wife performed CPR on our four month old while I frantically called 911 from my wife's phone because mine had just died. I'm a dumbass. Our four year old is twirling in circles as the paramedics arrive. She asks the cop if he can open her milk, she's thirsty. Lucy had started breathing again. We told the paramedics the doctors had said this might happen, but that we should call the paramedics "just in case she doesn't recover on her own". The paramedic looks at me and asks "what's her prognosis"? I didn't really understand, but she was asking "is your child going to die?". They took her and my wife away to the hospital. The doctors read some research and told my wife that the majority of kids with this complication, called PEAC, die. They don't ever "get over it", even kids as old as 12 have died. We ask if there's anything we can do. The doctors shrug and the palliative care psychologist wants to talk to us. My wife spends the next few days glued to the computer. She asked the doctor for the print outs of the medical research he's referencing. She finds more. She finds a doctor at the Mayo clinic who had done some research prescribing a specific anti-anxiety medicine and found that the mortality of these children had gone to zero. Admittedly it was a small sample size but initially the doctor brushed off the suggestion of the medicine. My wife wrote a long email with citations describing Lucy's symptoms, and the treatments outlined in the medical literature. She emailed it to the hospital's social worker since you can't communicate directly with the doctors. The next day the doctors had the bright idea of prescribing the anti-anxiety medication. Lucy's breath holding spells stopped. There's a surgery that's also suggested in the literature. My wife asks for that. The head of neurosurgery says he won't do it. We call a doctor who is an expert in her condition and he says she should get the surgery. We say we want to transfer to that hospital, hundreds of miles away. Once he hears that, the head of neurosurgery says he'll do it. My wife sighs in both exasperation and relief. The doctors have fought us every step of the way.
Lucy came home two weeks ago. She's actually a pretty normal baby. Cognitively she's right on track, even though she doesn't wiggle her toes. We're provided with a night nurse twelve hours a day because her breathing can be irregular sometime. But her breath holding spells, the thing that was most likely to kill her, have completely stopped. Things are starting to feel normal, the nurses are kind to us and to our daughter. My wife seems to be relaxing for the first time in eight months. It looks like she has a future. Life is no longer paused until further notice.
I've learned I'm worthwhile. I'm more worthwhile if I take stimulant drugs. I've learned that a family can endure far more than you might think it can. I've learned that my wife will move mountains if she has to for our kids.