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I was really anxious before the birth of my son Aaron in 1997. It wasn’t the worry of a new father, since I already had two kids, Gene aged 14 and Maggie who was 10. So I thought I knew a thing or two about babies and wasn’t undone by the more general fears of bringing a new child into the world that afflict all new parents. I wasn’t even that worried about my new wife Lucy, who was not the mother of my older kids, as she was a healthy, strong, resourceful and altogether wonderful person. I was worried about the first two years. How was I going to cope? How would I manage the innumerable crises and logistics of being a parent? Could I do it? After those first
couple of years, I knew I would be okay, or at least on familiar ground.
That was how old my daughter Maggie was when I ended up as paraplegic
with a spinal injury. She was still nursing, still in diapers, still
a toddler. But that fateful day when I took my bicycle down to the I knew I could handle kids past the age of two, since I had already done that. Maggie used to ride around town on my lap while I was still learning how to push myself around by hand, and after an initial, accidental dump or two, when my newly found wheelchair skills weren’t up to navigating a bumpy curb-cut or sidewalk irregularity, we did fine. My whole landscape was different and I had to deal with issues that never end up in the minds of most parents. But like most suddenly disabled people, I was a quick study and learned pretty fast about feeding kids lunch from a wheelchair, taking them to the park and to the local bakery, even how to do wood projects and other more physically oriented activities. Some things weren’t even all that different at all. To a casual observer, seeing me read Wind in the Willows to them on the couch would have seemed like no big deal, as long as no one had witnessed how I had had to get myself from my wheelchair onto the couch. Talking was fine, maybe even better since I was closer to eye-height for them in my wheelchair. But, my goodness, an awful lot of other things had changed. I was a nervous
wreck at some parks. I had to instruct the kids not to play in certain
areas, if I thought I couldn’t get there for them. One of my recurring
nightmares those first years was exactly that: my kids would climb a
tree, fall over a fence, hurt themselves and be SOMEWHERE I COULDN’T
REACH THEM. I would wake up in a cold sweat, my hands trembling – their
father had let them down, let them get hurt – and then I would slowly
subside back into the morning wake-world of safety – it was okay, it
was just a dream, it didn’t really happen after all. At parks I would
sometimes relent to their pleas to do stuff if there were other parents
around, someone who could help out if something nasty happened. One
time I had taken them to the downtown mall in But a baby? How would I cope? It turns out one of the key talents needed by a wheelchair parent is the ability to scoop a kid off the floor from the chair. This is a lot harder than it sounds. My injury is considered a T-8 in technical neurological terms – no part of my body below my navel works. Obviously, my legs are lifeless, but a whole gaggle of other muscles who live below that line or have attachments on either side of that line are also affected. My trunk muscles are shot and my sitting balance is atrocious. I lack the ability to lean over or reach and pick something up unless I am able to hold onto something else solid with my opposite, non-reaching, hand. Of course, as long as Aaron was relatively immobile, all was well. I could strap him in a Baby Bjorn and get around town fine, and we spent many happy hours traversing the neighborhood. Sitting on the floor playing was fine but once he was crawling I had to be able to gallop after him and pull him out of closets or other enticing, but off-limits, locations. The solution involved keeping him in overalls – the denim was strong enough for me to execute a one-handed swoop and the design of the overalls’ back made for a suitable suitcase grip. Similarly, this meant I could use the overall fronts as a grabbing point to cantilever him into his car seat (although my wife’s mother nearly had a heart attack the first time she witnessed this little maneuver. I am sure she imagined the newspaper headlines “Paraplegic Dad drops Infant on Parking Garage Floor—broken bones and internal trauma the result.”) All this didn’t mean no accidents – I managed to dump my second daughter Heather as a two year old while trying to shoehorn her into a swing set at the park. In reaching her over to the swing, my balance shifted backwards and heels-over-head the two of us went. But I managed to keep the risks to an acceptable level and no one was seriously hurt due to my inability to get around “normally.” Another facet that was really important for me as a parent was the need for the kids to be “well trained” (I use this phrase only in a relative sense.) But they had to be able to stop, or come when I called without hesitation. Without that capacity they could get themselves into situations where I would be of no use. But, as any parent knows, it is not so much even the physical interventions sometimes as the mental sanity part that is vital. During the aftermath of my injury I had a host of issues to deal with. I had been a blue-collar worker and so the loss of my body meant also the loss of my livelihood. I managed to lose my first wife too, or rather she unceremoniously fired me after a year of life post-injury, and it took several long hard years of going to graduate school and retooling before I was able to achieve anything resembling economic solvency again. I experienced sharp pangs at doing previously simple activities. I had been pitching batting practice for Gene since he was two years old and continued to do so post-accident. But it was entirely different – I couldn’t shag his fly balls or chase after his line drives like I used to, and while he was a good sport about it and now had to do his own fetching, I also knew it had altered for him and wasn’t as much fun. I would see other fathers playing catch or Frisbee with their kids and a knot would come to my throat. How easy, how graceful that looked, and I would never be able to share those kinds of experiences with my kids as they grew up. And my sanity took
a severe beating for several years post-accident in all kinds of ways.
I was a single parent for half the week, fighting for joint custody
of the kids with my former wife, scrabbling my way through graduate
school and then trying to wedge myself into the job market during the
last major Speaking of miracles, that was another facet of Heather and Aaron’s lives that continue to amaze me. Spinal injury puts an enormous dent into a male’s fertility (not most females, although it can complicate matters) and it became quickly apparent that if Lucy and I were to have kids, it was going to take some serious medical miracle work. My timing in this regard was uncharacteristically fortunate, as a brand new piece of surgery had just been introduced by a urologist at UCSF, among others, and we were able to conceive two healthy kids, although at a cost of a quarter of a year’s salary, as health insurance in its typical American incarnation will pay for the “diagnosis” of infertility, but not its treatment. The birth of Aaron after nine months of hoping and wishing and planning and hoping some more was one of the high moments of my life. Tears come to my eyes even now when I think about his arrival. Heather still rides in my lap, although she is too heavy now for any serious uphill travels. None of the kids, none of them, I think really care all that much that their father is in a wheelchair. It will likely pose some problems when they have their first apartments or want to have family gatherings at what turn out to be inaccessible places, but the backbone of the relationship has no bearing on physical impairment. They do care that I am there for them, read stories and tickle them (younger) or suggest colleges and pay for them (older.) Disabled people live under a magnifying glass, if not a microscope. Everything is larger than life. In a wheelchair, an inch is often as far as a mile, if I cannot reach something, and jumping a three inch curb is way different from hopping a two inch one. I undergo scrutiny of the most devastating and relentless kind: at work, on university committees, on the BART ride home. My appreciation for the kinds of discrimination experienced by ethnic minorities has grown enormously – everyone is looking to see how you are going to perform and the pressure to overachieve is acute and frequently oppressive. My favorite age for attention, however, is somewhere between 4 and 8. Kids this age are fascinated by the chair, and unless overly restrained by their parents will freely ask all kinds of questions. “Why do you have small wheels in front?” “How do you get into bed?” “Can you drive a car? How?” I generally prefer that their parents not get too involved in the discussion, as often the parents hover, hoping against hope that their progeny will not ask an embarrassing question or violate contemporary standards of political correctness. The parents who I wish were more attuned usually have kids who come up, start pushing the wheels around or running their hands over my machinery. In this case I have to very firmly take charge and make sure they realize that my wheelchair is part of me – my way of getting around, and moving my wheels is like standing on someone’s toes and not considerate of my space. At this age, I used to go to Gene and Maggie’s school classes for a talk and demo. I would bring a spare wheelchair along, so the kids could see a couple different kinds, and then after I transferred off of my regular one, everyone would get a few minutes taking one or the other of the chairs around the room, seeing what is what like to push your way through life, reach doorknobs, light switches, desktops. For me, it also means, however, that certain life-pleasures are magnified (although not many of them.) Raising kids is one. Having Heather and Aaron as youngsters, Gene and Maggie as maturing young adults, does wonders for my soul, and allows it hope for the future and serves as a reminder of how tenuous happiness and life are. I get to nudge them into civilization and try to teach morals and balance and decision-making and, if nothing else, the value of persistence, although they may never be in a position to guess what role that it had for my own life. But they are all, each of them, good kids, and my enduring pleasure to experience that. Ned Fielden
is a reference librarian at |