After spending most of my life in the world of cancer, this little boy was meant to bring a sense of normalcy. And while he has in so many ways (hello nighttime pee-pee diapers!), having a growing child has really brought to light the little things that I am unable to do because I have one leg and use a wheelchair.
[photo by LA]
In 1995, I had my leg amputated above the knee (as part of my cancer treatment).
[1995. Christmas picture with my cute siblings and Inky, the chihuahua.]
I actually had a procedure done called a Limb Salvage, which is where they take out the cancerous bone (while preserving the muscle, foot, knee, etc..) and replace it with a metal rod. My body rejected it and the amputation was inevitable. I'm sure the last thing on my parent's mind was weather or not an amputation would hinder my abilities as a mother. In fact, it's a blazing miracle that I'm still alive and we don't that for granted at all.
As a teenager, I wore a prosthetic leg and walked around like you or anyone else.
[Homecoming, 2002.]
I was embarrassed (dreadfully embarrassed in fact) about it, and hid behind pants everyday. Actually, Dustin didn't even know that I had a fake leg until I told him that fateful day in study hall. Although I was able to walk, it was pretty uncomfortable and I can still recall the stress and pain that wearing a prosthetic presented. The socket that was molded to fit the bit of leg I had left, was plastic and was held on by a suction valve. Plastic, obviously, didn't allow for much in the way of "breathing", so my leg was constantly hot and sweating, and if you're a parent, you know what wetness inside of plastic leads to - heat rash and sores. I used to get the worse abrasion where the socket would rub with each step. Some days I would be so swollen and sore that my leg wouldn't fit and I refused to go to school without my leg on (in a wheelchair or with crutches), so I had to stay home from school. I won't even get into the whole water retention/ being a female thing. You get the drift, though, I'm sure.
Fast forward to 2005 when my cancer came back and claimed my right lung.
[After my lung removal surgery. Stanford Hospital, 2005.]
With that being such a huge surgery and the seven rounds of chemo that followed, the whole losing and gaining weight problem resurfaced, so, much of that time I went "without my leg." After healing and finishing my rounds and such, we went back to living our normal life - school, work, being married.
[Disneyland, 2009.]
Fast forward again to the summer of 2008 when my cancer came back again, not once but twice. I had CyberKnife therapy at UCSF and when they discovered the tumor in my tummy, I had a huge procedure called a Whipple.
[In San Fransisco after a Cyberknife treatment.]
While I didn't have to get any chemo this time (the doctors concluded that chemo doesn't really work long-term in my body and they wouldn't do it again), the Whipple messed up my digestive system a lot, which caused me to lose a lot of weight fast, leaving me with a socket that was too big and a "little leg" (we also call it Bean...yeah, my little amputated leg has a name.) that was nothing but bone on the bottom.
[Fonzie is sitting right infront of Beam, but you get the idea with how scrawny I became. Halloween, 2008.]
To get an idea of what it was like, bend your arm and feel your elbow, that's what the bottom of my leg is like, only it's MUCH more sensitive. Now, try walking on that. After talking with a doctor, the only way to "fix" it was to have another surgery where they would cut me open, "shave" down my bone and wrap some muscle around the bottom of the bone for "cushion". Yikes! Just like any surgery, there are pros and cons, and the biggest con, of course, is death. So, I chose not to do it.
Fast forward to today, with me and Bubby and Squiddy together - my sweet little family.
[Total picture re-post, I know... but, but.. it's one of my favorites!]
We rent a smaller 2 bedroom, one bathroom house in the Richmond Hills area of the San Francisco Bay Area. While we love this house - the location and proximity to the things that are spot on with our lifestyle, the layout, the view and our old, crazy neighbors - it isn't 100% handicap accessible. I can BARELY get my chair into the tiny bathroom and more often than not, end up hopping. This is not ideal when I'm trying to bathe the baby! I am not able to kneel on floor when bathing the Squid, so bath time = backache for me.
I've gotten very good at wheeling myself around with Squid in my arm(s).
[Doesn't he look happy?! We were working on sitting up using our neck muscles and I slapped that hat on him to take pictures. It pissed him off - already not able to multi-task like his Daddy! Tee hee!]
I take it slow and am always steadying myself before I make a move which might end badly if I were to topple over. I've almost perfected the whole "nursing the baby with one arm while rolling down the hall" thing. In fact, Roman likes to sit facing outwards on my lap, saddling my thigh as I toodle about the house. As far as sleep goes, we keep a bassinet next to my side of the bed and he sleeps in our room, so nighttime changings and feedings are done without having to leave bed. He naps in there during the day and sometimes in his crib in his room. His changing table and crib are right next to each other so all I have to do is pivot and turn to take him from one to the other.
Our house is one level (thank heaven!) which is the only way possible for a mostly functional life on my part. I can get into all the door ways while in my chair, but it's cramped. We are SO blessed to have found a rental where the (tiny!) garage is level with the house, so I'm able to roll out there and do the laundry by myself. The garage is tiny, though, so I'm not really able to maneuver around the car without moving it, which is a huge hassle to have to do every time. The ONLY other way to get outside is through the front door, which has a step down, so I'm not able to just "go outside" in my wheelchair. I use crutches sometimes, but I definitely can't hold the baby and crutch outside. Squid LOVES being out doors, and as of late, he hates all of his carriers (Ergo, Bjorn, Panda Pouch and his sling), so taking him outside is HUGE production for me. I tried hopping once (OMG.. I know) while holding him to get to the front patio chairs, but I decided that it was a bad (BAD) idea to wobble on one leg while using my arms to hold an infant, my precious boy. To get to the (rocky, gopher-town, spidery grass-ed) backyard, I have to go out the garage and down a flight of about five stairs, which is not really do-able for me. It's hard because some days I really feel kind of trapped in the house, and while I CAN strap Squid into his carseat and drive somewhere, it's not the same as being able to just pop outside for a walk on a whim.
About driving... I am able to drive almost any automatic car out there - I just use my left (and only) foot like a bi-ped uses his or her right foot. In order to take Squid out by myself here's the rundown: I load him up in his boat of a carseat, lift the boat while in my chair and scoot out into the garage using my foot to propel myself. I scoot up next to the car door and set his seat down, open the door, use my buff one leg to lift his cow of a seat into the car and buckle him in. I wheel myself back to the door that connects our kitchen to the garage and put the breaks on the chair. I then hop to my side of the car with what ever bags I'm taking with me. Thankfully we have an automatic garage door, so I just pop the door open with the remote and drive on to where ever we're off to. Once I get where I'm going, I usually am lucky enough to get a good handicapped spot up front (perk of having one leg!). I shut the car off, hop to the back of the car and pull my (heavy!) wheel chair out of the back of our car. If I'm using a baby carrier, I will then put it on and take Squid out of his carseat and snuggle him in. If I'm using his stroller, I'll get his stroller out (while balancing!) and then unbuckle his carseat and snap it into the frame of the stroller. I can push him around, even though it's a bit tough. I use one hand to push and steer his stroller and one hand and my foot to propel myself in my wheelchair. Uphill and down hill areas suck. I haven't taken him out much by myself because life with a newborn is complicated enough and I'm afraid of having a screaming baby in the middle of a store that will take forever for me to get out of.
I had a friend ask what the hardest thing about being a handicapped Mother is, and I'd have to say that it's not being able to just get up and walk with him from point A to point B. There is no soothing him by walking out front and letting him feel the sun on his skin. There are no quick trips anywhere or walks down the street. No full body dancing and bopping to get him to calm down. And even though I know that he won't know that I'm different than most mothers until he's much older, I know that it's coming. I have no idea what the next year will hold for me as a Mother as far as the effects of my mobility goes, but I do know three things:
1) I am lucky to have as much mobility as I do. Some people have even less and I know that it's got to be even harder on them than what I'm experiencing.
2) He loves me no matter what. He loves me even though I only have five toes and he'd love me if I had 50. Bubby does, too and for that, I am eternally thankful.
3) I'm prepared, at least a little. I got this for the next step in HIS mobility. Yes, I bought a kid leash, don't judge! Ha.
Hope you got something out of that! Have any questions? I love questions!
xo,
Violet
