I have been home for a week now from the rehab facility. I have also been a paraplegic for almost three and a half months. Everything still seems surreal.
The home health care nurse is here every night to assist me in dressing for bed. She is back again in the morning to assist me with bathroom care and dressing. Once she gets me in my wheelchair, I able to be a part of the family. My mother has the house under control along with the children. The maid is coming over more often now.
The big sliding door that goes through to the wall of the bedroom is the big elephant in my life. It tells me everything I need to know about the changes that had to occur because I can no longer walk. My husband just put earnest money down on another house. It will be a completely new construction, built from the ground up, so that we can make everything accessible. I feel as though the decisions I am to make are still just too big to wrap my head around. It’s as if my mind doesn’t want me to go there right now, but instead forces me to stay in the moment. I don’t fight it, and let everything, as well as everyone, do what they need to do.
The biggest moment of reality comes when the people who knew me before the paralysis look at me as though I am someone to be pitied. I am not sure how I feel about that right now, and often zone out their expressions of sorrow.
The daycare center that takes care of my two children during the day are doing everything they can to help us. The ladies who work in the infant care room take care of my son as if he is their child. My daughter is quieter, but they are doing all they can to help her forget about the confusion that has been clouding her young mind.
I received the order for further physical therapy at an outpatient rehab facility. My brother will drive me there three times a week. Transfers are still hard. I haven’t quite managed the smooth flow of shifting my weight from one surface to another. I have the order to get hand controls placed in my sedan, in addition to driving lessons to learn how to maneuver my vehicle with them.
All of these changes become such a reality check for me as to what my life really entails.
I find the hardest time of all is when I go out, because I can’t handle the stares. In fact, they bother me so much that I find myself doing everything I can to forget about where I am for the moment. I get two types of stares. One is the, “Look at her!” stare, and the other is a look of confusion, as if they can tell I shouldn’t be in this wheelchair either.
I also keep bumping into doorframes and scratching walls because I still don’t know how to measure the movement as I move around in my wheelchair. It will still be a few more weeks before I get my new chair. It seems almost bizarre that I will learn how to break down my wheelchair, put it inside my car and drive to a destination. Through all this I find comfort knowing I still have experts around me to teach me how exactly I am supposed to do all of this.
In addition, we are now searching for a nanny. My mother is already training the home health nurse to become the helper of my son during the day. Again, I go with the flow of everything happening around me.
I still haven’t mastered the art of holding my baby, so I resort to others to help me take care of him. On the inside I am dying to just be a mother to him. My daughter seems content with the attention of family around her, but she often seems too quiet around me. I still feel she doesn’t know what to say or do around me, and I'm not able to offer any suggestions.
I tried looking on the internet for books about mothers in wheelchairs for children. I found one book, but it is not realistic. Everything that seems written about a person with a disability relates to accomplishments in sports. I am not an athlete, and I never have been. Even with this paralysis, I don’t see myself enjoying that side of life. I just want to live my life the way I used to as a mother, wife, employee, and homemaker.
At night I find myself drifting into thought of what I want to do next. I feel as though my identity has been stripped so bare that I am literally working on the beginning from the ground level, just like the house being built. The interesting thing is it is happening so quickly, and I don’t seem to have a chance to catch up or even take a breath.
The most heart wrenching moment of all occurred last night when my husband commented that things are different. I cried myself to sleep quietly while my baby slept in between us.
I wish I could just turn that switch and let this nightmare go away, but it seems to be getting worse. Most of all, I am left with this one question: Who am I now?