Long Distance Dad
Hello again! It’s Chris, more commonly known as Oscar’s dad. Since the last time I posted on INTC (about a year ago), Oscar has come a long way, reaching milestones I thought wouldn’t come until he was much older, if ever. At three years old, he can sit up all on his own. He is learning to roll over and is starting to put himself in a crawling position. He loves playing peek-a-boo. He can turn the pages of a book by himself. He can scoot in circles on his tushy, and uses this ability to turn himself around and follow you wherever you go. He has finally started to eat food by mouth again, albeit still not nearly enough to replace his G-tube. He’s gaining weight at a quicker pace. And perhaps most entertaining, he is now able to walk around a room with the assistance of his gait trainer, usually walking over to our barstools. He’s developed a near-romantic fascination with the barstools.
Unfortunately, I’ve had to witness most of Oscar’s milestones through videos or FaceTime for the past nine months, as I’ve been working in Wyoming, 1,400 miles away from Oscar and Cristina. The original plan was for the whole family to go, but shortly before our move, we learned that Oscar is immunosuppressed, which explained why Oscar kept getting admitted into the ICU for things like common cold viruses. But Cheyenne has only one hospital, and it doesn’t have an ICU for children. And based on reviews—both public and private—of that hospital, we decided it best for Cristina and Oscar to stay in New Orleans for the year. It sucks, but it was the least bad of our various options. Thankfully, I’ve been able to fly in for the weekend once or twice every month, so I get to see Oscar’s milestones in person, if not for the first time. And in less than three months, we’ll all be together again. Hallelujah!
Being a father from afar is tough. First, there’s the sheer loneliness of being away from your family. I’m generally pretty good at keeping myself occupied/entertained, but it wears on you after a while. Then, there’s the guilt from feeling like I'm not there to support them. I see how tired Cristina is, and I know that I’m not there to relieve her so she can take a nap or go to the gym, or whatever she needs to do to unwind. Then, there’s the exhaustion from traveling so much to see them. Every two to three weeks, I drive two hours to the airport and take a three-hour flight on a late Friday night, to stay for the weekend. And then I do it all over again on the way back.
By far, the worst feeling is having to leave to go back. I thought that it would get easier over time, but it gets harder and harder to force myself to get on the plane back to Wyoming. Oscar is too young to understand, but the look on Cristina’s face makes me just about break down. I have an interesting and (usually) fun job, so it wasn’t as hard at first. But now the novelty has worn off. And I’m just tired and miss my family. I’ve made some great friends since I’ve been here, people I will miss dearly when my time here is finished. But they know my situation, so when I tell them I can’t wait to get the hell out of Wyoming, they understand.
Anyway, enough of my pity party. Back to Oscar. That boy inspires me so much. My last post here was kind of a downer, and I happy to report that things have gotten better. Oscar definitely knows who I am now, though he’s still struggling to identify me by name. He says “da-da,” though not in any direct correlation to seeing me. I’m confident that one day he’ll get it. More importantly, I can look into his eyes and know that he recognizes me. And he cries when I leave the room, which is both sad (because he’s crying) and happy (because he knows who I am). Oscar is also becoming such a character, too—especially late at night when he starts to get delirious and do jiujitsu, as Cristina calls it. He makes the silliest noises and faces, and it’s too cute for words.
Cristina also inspires me every day. She’s basically a single mother right now, sacrificing her own personal time and space for Oscar. Initially, when I left for Wyoming, Oscar was going to a wonderful special-needs daycare center, paid for by Medicaid. But when the doctors gave us the news last fall that Oscar is immunosuppressed, they recommended keeping him out of daycare until he’s about five years old. Daycare means being around other kids with germs, and every time Oscar gets sick, it puts enormous stress on his already-fragile organs. So the convenience of daycare is not worth the risk. As a result, Cristina had to quit her job at a fitness studio to take care of Oscar all day, every day. She gets some help from family members and babysitters, thank goodness. But for the most part, it’s just her. Preparing his G-tube formula and his medicines. Carrying a nearly-thirty-pound toddler who can’t walk all over the house. Trying to feed him real food, a perennial struggle. Doing physical and occupational therapy with him. Taking him to never-ending doctors appointments. Dealing with his chronic constipation, and the volcano of poop that erupts when it has been dealt with. And doing all this while trying to keep Oscar occupied and stimulated, so that he can learn and develop.
Even with all of this on her plate, Cristina still manages to find the time and energy to do her own thing. She made her directorial debut recently, starring in and directing “Jump, Jive, and Wail: the Music of Louis Prima” at the National World War II Museum. She keeps an active blog which inspires thousands of special-needs parents all over the world. She sits on the board of Children’s Hospital’s Parent and Family Advisory Council. She occasionally fills in to teach Pilates, yoga, and ARX. And she recorded a new single, though I don’t think I’m allowed to give any more details about that—suffice it to say, it’s funky as hell.
Like all special-needs parents, we still have to put up with the regular bullshit: streets and buildings that were not designed for wheelchairs, constant battling with insurance companies and healthcare providers who treat my son’s health as a commodity(which I now refer to as my “second job”), and, of course, stupid comments—apparently, someone asked Cristina’s sister if she was “scared” to have children because of Oscar.
Soap box time. I am realizing that the disabled community remains the only community against which our society tolerates blatant discrimination—and in some cases actively promotes it. We experienced this firsthand when we were looking at daycares in the New Orleans area. We quickly realized that, unlike Oscar’s “inclusive” daycare in Birmingham (shout-out to Hand-in-Hand), exactly zero of the daycares in New Orleans were integrated with both disabled and typical-developing kids. Instead, most cognitively disabled kids must attend “special schools,” where they are segregated from typically-developing kids. Under the law, disabled children are supposed to be integrated into general classrooms wherever feasible. But in practice, that’s not even remotely happening. And no one seems to care.
Every modern crisis of our time—climate change, unaffordable health care costs, student debt—has a disproportionately negative impact on the disabled. The list of indignities is endless.
When Home Depot builds a makeshift walker for a disabled child, it goes viral as a feel-good story, instead of an indictment of our health care system. . . . Hundreds, if not thousands, of elderly and disabled people died preventable deaths in Puerto Rico after Hurricane Maria. The electric grid was down for more than a year in some places. So people who needed electricity to power their life-saving machines—breathing machines, feeding pumps, refrigerators to store medicine like insulin, etc—had no access to it. . . .We’ve criminalized mental illness. We spent decades building more prisons while we defunded mental health programs, to the point where prisons have become the biggest mental health provider in the country. And the mentally ill are sixteen times more likely to be killed by police. . . . A Georgetown student with a spinal disorder—who was her high school’s valedictorian—recently had to drop out of school because her insurance coverage wouldn’t cover the needed cost of home health aides. Too expensive, the government says. And most people accept that justification. But we spend more money on bombs and other weapons than the next ten countries combined, including on boondoggles like the F-35 program—a $1,500,000,000,000 price tag for a plane that doesn’t even work. I shudder at the thought of how many full-time home health aides that could pay for.
I’ll get off the soap box now. But hopefully you can see how the disabled and their caregivers are forced into becoming activists just to live a dignified life. Carrie Ann Lucas, an absolutely fierce disability-rights attorney, died because her insurance company refused to spend $2,000 on a medication she needed. We likewise have to fight for Oscar’s life every damn day.
Luckily, Oscar is a fighter. If I had to deal with 1/100th of the medical issues he does, I would be the grumpiest person around, and no one would fault me for it. But he is the happiest kid you’ll ever meet, and he puts a smile on the face of everyone he meets. He gets poked, prodded, and probed more than any child his age should be. He’s had more surgeries at three years old than most people have in a lifetime, and at least one more awaits. But you won’t hear Oscar complain. Not unless you stand in front of the TV while Puppy Dog Pals is on.