Ourself: Looking for the little girl in a body that doesn't work

Preface
This post has haunted me for years. I’ve written it in fits and starts and never really found a great way to put the quandary into words. However imperfect, the time is now because surprisingly and thankfully I’m seeing Keira’s personality, honest, true, and undeniable, peaking out more and more in such a way that’s alleviating my own internal battle with the issue. Because I feel this struggle is important, I want to put words to it before it’s too distant a memory.

I have come up with a couple of conclusions while wrestling with these ideas. First, the concepts of a) the developing self in a disabled body and b) the particularities of parenting children with severe disabilities are vastly complex and no matter how well I write, the contents probably warrant a dissertation or two. Lucky for you, I’ve written enough of those for my lifetime. 

Second, advocacy is such an important term for healthy realization of both those concepts. Advocacy is a word I knew only vaguely before Keira's birth. Far from inconsequential, her potential hinges on my ability to be a good advocate for her. Generally a positive term, I think an advocate's effectiveness ranges immensely. At best, a good advocate will help to maximize a person’s interpersonal relationships and functional independence. At worst, poor advocate will suffocate a person’s uniqueness and may even exploit her disabilities for personal gain.

Self and personality

What makes a person a person? What is “self?” Simply speaking, it’s the essence of who we are; our tendencies, proclivities, and neuroses. Our tastes, our aversions, our interests, our motivations, our memories, our uniqueness. Nobody can define the self except the person themselves. However, others can identify personality, which is the outward expression of what a person thinks and feels.

But what about when a person’s body is so severely compromised that so very little is physically and verbally expressed? Herein lies so much of what is difficult about our life. What traits are truly Keira? How much of what we attribute to Keira is really her? How often do I attribute my own preferences and anxieties to her? Does it matter? Am I doing a good enough job of trying to decipher who she is? How often have I have assigned something to her because I had nothing else to go on? I mean, how stupid do I look when someone asks me what her favorite color is and I don’t know?

There was never a doubt that she loves this guy!

A while back, I read a book called Ghost Boy by Martin Pistorius. It’s an autobiography about a man who was typically-developing until late childhood, when an unknown illness stripped him of all volitional movement and the ability to communicate. At first, reading his story was really validating to me. We’ve done so well! Keira would likely be a ‘ghost girl’ if we weren't such receptive, active parents. We’ve given her a life. What if we hadn’t been there all along the way, insisting that the therapists and caregivers wait and watch? Teaching them to notice her?

As I continued to read, I experienced so much anxiety that I stopped reading for quite some time. Martin’s family assumed for many years that he was no longer “in there.” They believed their son was gone and was incapable of intelligible thought. How much of what we believe about Keira is accurate and how much is made up? You see, they eventually found that the young man was of average intelligence and when a keen observer finally noticed, Martin was able to get the help he neede to be able to read, talk, get a job, and even publish the book. Oh my gosh. The pressure. I mean, I know that Keira is no Stephen Hawking, but how much of Keira is still hiding in there? If we tried harder, what could she do? How could I possibly try harder?  



It was hard for me to get through the book and cope with those ideas. Because I have some bad days. Some really dark days. I’m not proud of the things that come to my mind:

What the heck am I doing? Dragging my vegetable around from appointment to appointment like it means something. Like it’s worth something to anyone but me, desperately trying to cling to some shred of dignity and hope that this all for a reason and not just a terrible tragic exercise in longsuffering. 


Sometimes we go to public events or birthday parties or other places where we really want Keira to feel included. Inversely, I feel a responsibility to help others feel comfortable with her, thereby making it easier to include her. I love to take her out, but to go to a birthday party, for example, is a lot of work, with me trying to keep her engaged and helping others to engage with her in nonthreatening (to them) ways. Sometimes I leave those situations feeling like I was working too hard.  I’m not fooling anyone. She’s my puppet; my ventriloquist dummy.  She’s Oscar and I’m the nameless Muppet carrying her trash can around. 

How to grow a self

In what is popularly called the “fourth trimester,” infants are kept close to their parents, as there is little they can do for themselves. We quite literally wear them wherever we go. The baby who was very  literally a part of Mom’s body is now physically existing outside of her, but psychologically, in many respects, is still one with her. That’s why our babies’ cry can trigger the let down of moms’ milk. That’s why the separation of baby and mom can cause mom to feel real physical pain. We use our own experiences to care for our little ones. I’m cold, so she must be cold. He’s just sitting there and that would bore me, so he must be bored.

This connectedness is reflected in our language. Ever notice how moms of littles often use the word “we” rather than referring to herself and her child as individuals? Whether talking to the baby or an outside observer, it’s often, “We have some work to do,” “We have a messy diaper, or “We’re taking a bath.”  Mom may be literally referring to the baby taking a bath, for example, or mommy taking a bath, or both taking a bath together.

This language and sense of connection changes gradually as the typical infant grows into a toddler and starts to do things on his or her own. He develops independence enough that he is doing things that Mom doesn’t necessarily consent to or want to participate in and as the “we” becomes mom and daughter or mom and son, so we recognize the tendencies, preferences, and initiative of the child start to grow. A little budding self. 

Around age 2, our kids typically stop being completely dependent and perhaps it’s that stark contrast from babyhood that makes the twos seem so “terrible” to many. All of a sudden, he doesn’t want to be a “we” anymore. He wants to start his own bath, eat his own food, pick his own clothes. Kids start to play, and through the play, they assert what they are interested in, what they think about, and how they feel.

It's exhausting as a parent to feel like you are never ever progressing to a new stage.Christmas after Christmas, I grow weary of walking down the same toy isle, the one meant for babies and toddlers. I’m hoping for something new that Keira will really enjoy and react to, but I know that I’m mostly going through the motions, because what would her brothers think if I didn’t have any presents for her under the tree?

In many ways, Keira is still an infant. For one, she doesn’t play. At least not independently. She shows very little interest in toys at all. She can’t play with any toys without me directly manipulating them and her. She sees very little without me showing it to her. She doesn't know what is in her backpack when she comes home from school or what toys live in her closet.  So, when she “plays,” her caregiver has usually chosen the setting, the toy, and the manner in which the toys are articulated. I put a lot of pressure on myself to go through the motions and offer her these experiences, assuming that they are enriching for her, but I can’t help feeling that I am putting a lot of “words in her mouth” by putting her through these scenarios.

"Keira's" painting

Some measure of “putting words in her mouth” is completely necessary and important to being Keira’s advocate. I can read her body language better than anybody. So, for example, when she is in the hospital, I am better able to assess her pain level than the average doctor or nurse. But putting actual words in her mouth has always made me uneasy.

From a very young age, we’ve worked with Keira to teach her to use switches for a variety of reasons. She has switches on which we can record speech so than when she pushes the button, she is “talking.” For example, when we are having friends over to the house, sometimes we’ll set up her switch to illicit one of the following with each push of the button: “Hi, I’m Keira!” “Thank you for coming to our house!” “Do you like my new wheelchair?” “Will you play with me?” It’s an exercise in helping her understand communication, to help others relate to her, to help her practice some sort of volitional behavior. In this case, putting words in her mouth seems to be the lesser of two evils. 

Herself 

What traits have been assigned to Keira? At some point, someone somewhere decided that Keira preferred yellow. Similarly, someone somewhere asserted that Keira liked pigs over other farm animals. What I suspect those people didn’t understand back then was that it was very difficult for Keira to visually focus anywhere but her right field of vision. So, when they held up 2 items, Keira wasn’t “picking” the one on the right because she liked it. She “picked” it because she could see it. Yet, the item on the right became her “choice” and her “preference.”

Satisfied with her Hatchimals

We ran with the pig idea. We thought it was cute and we briefly entertained getting teacup pig for her as a pet. We dressed Keira like Peppa Pig for Halloween, which was fun because when Keira's happy she actually makes a snorting noise. I’ve made a point of rewarding her (is the reward for me or for her?) with a little trinket after each of her monthly blood draws. I was routinely buying her mini Peppa figures until we had about 6 or 8 of them. I’m pretty sure I enjoyed collecting them more than she did. I was thankful and proud of her, though,  when she finally asserted (by looking to her left) that she would prefer a Hatchimal over another Peppa toy. That’s Keira in there!!

Never in a million years would I have predicted that I would care so much about my daughter's looks. I have found myself immensely glad that she is cute. That she has pretty curly hair. That she tolerates me dressing her stylishly. That she lets me paint her fingernails. But what I find, for better or worse is that these things add up to 1) making her more approachable, 2) helping others feel more comfortable with her, 3) giving people something to talk about besides her disability. Is it because I value outward appearance so much? Absolutely not. It’s because it is so difficult to know who she is and what she likes so it’s another effort on my part to make these statements for her. Does she LOVE having her nails done? Maybe? She tolerates it. What I know for sure is that she loves attention from others. (Again, if she were typical, I really doubt I would celebrate her trying to draw attention to herself in this way). On bad days, I wonder if I’m just playing dress up with my doll.

Ourself
Is there such thing as “ourself?” I didn’t think so, but I did find it in the dictionary. Maybe it’s applicable to identical twins? Maybe it’s a hoaxy sort of concept for those with ESP or fortune telling abilities? In any case, it doesn’t generally seem that a shared self would be very healthy. Think of terms like enmeshed, conjoined, symbiotic, interdependent, codependent, and diffuse boundaries. None of those are typically used when talking about healthy parent/child relationships. Parent/child differentiation is what is important. But how much can Keira “differentiate” when she cannot so much as get out of bed without me? With Keira, symbiosis and dependence seem like a necessity. Which, in turn, makes me cringe at the idea of  me potentially having to live life without her in the future.

"Our" Halloween costume

It’s not just me sculpting Keira’s identity. She has surely sculpted mine. My time. My professional practice. My writing. My availability to other family members and friends. Being Keira's advocate has become a heavy responsibility that extends outside of our own family and into the community. I’ve written before about how she “makes me special.” The things that I am often known for these days are the roles I’ve been introduced to as a result of my experience mothering Keira: CMV advocacy, parent mentoring, and inclusion ministry. My life now is so inextricably entwined with her and everything she represents. It’s messy. Having Keira has given me opportunities that make me feel important and fulfilled. I’m no longer me without her. She’s not her without me. I suppose that’s true of all mothers with their children. But it feels so much weightier with a child who is so vulnerable.  

Eventually, most kids will clearly confirm or deny whatever traits we have attributed to them. With Keira and kids like her this rarely happens. I keep having to do all the things. I keep having to make all the decisions, claim all the preferences, and magnify any efforts at self- assertion and communication that I think I may have possibly kind of, sort of seen. My job, as I see it, is to identify, as correctly as I can possibly muster, her distilled personality and share it with others. 

K's new glasses are MY favorite color, but she did seem to prefer them!

Keira herself
Just when all this was starting to weigh heavily on me, Keira went through a seriously assertive and sassy phase. I found her often saying no to me (pursing her lips), and only me, much of the time. She seemed to me to be saying, "Take me here. Take me there. Do this for me. Do that for me. But don’t talk. Stay out of the way. Leave me alone." It was as if she were trying to create her own space and semblance of independence. I was proud of her, really, though Jeff did give her a stern talking-to about being respectful to her mother.

Keira is 7 now. Seven, of all the years so far, has seemed to bring with it such unbelievable change. It is hard to describe how a girl with so little functional ability can grow and mature, but she is. Like a flower that grows through a crack in the concrete, it’s hard to imagine that anything could develop within such a confined space. And boy, I'll be the first to admit I’m cynical, but I sure love for her to surprise me.

More than once, by coughing or pursing her lips, Keira has told me to go away when a favorite caregiver comes over. Similarly, she has told me what outfit she doesn’t want to wear. When we ask her about her day, we aren’t just hearing ourselves talk anymore. When we guess at what she has been up to all day, she laughs (accurately, we later confirm) when we correctly identify what she did (ie. Therapy, swimming, painting, or library). As more of her life is lived outside the house, we are finding that others are drawing similar conclusions about what she likes and dislikes.

We have found that when we have gone with our hunches in regards to her preferences, we are usually rewarded. In this way, we decided to have a birthday party for her this year in a fashion that would be suitable to any 7-year-old girl, with crafts and treats and other 7-year-old girls. Boy was that a great day.

Even Christmas feels a little different this year. We’ve decided to splurge and get Keira an American Girl doll, complete with curly blond hair, glasses, hearing aids, and a wheelchair. It’s an impulse for sure, and we know full well that the gift may be more for us (wanting to buy a gift any typical 7-year-old would love) than for her. However, we also have hope that she may enjoy this gift in a way that she's never enjoyed another gift before.