Such a balancing act.
As I have begun to reset my feet on hard ground with Kath’s diagnosis I realize that although I have tried to make sure I was still ‘there’ for my other kids, I didn’t spend as much time as I should really thinking about what having a sibling with a disability meant for them. I know MY world was rocked. I went from not being prepared mentally for a fourth child to feeling guilty about my stray thoughts regarding how much my life changed especially since she was a child with special needs to being thankful for my role as Kath’s mom. But I didn’t spend enough time considering how it changed and impacted my other children even though it did shift everything around for them as well.
It took me a long time to come to grips with how exactly Kath’s diagnosis affected me as I was struggling with the daily demands of a child with a disability and spending any extra time trying to understand what it meant for her. I realize now that it shifted my balance in my pace of movement in life. It altered my balance of thinking and movement in my career and it shifted the balance in all of my friendships and relationships. And the ripples from these changes had to rock my other children, but they also had their own real reactions, which I could not even consider or even think to ask. Until now. Almost 6 years later.
First a little background. Chris is now 25. He was 19 when we got Kath’s diagnosis, the same age I was when I was lucky enough to become his mom, and he was on another continent as part of his college’s Study Abroad program. Nick is now 24. He learned about childhood stroke and cerebral palsy with us when he was a senior in high school, and one year after his own horrible head injury due to a sports accident. Alex is now 9. She was only 3 when she learned that her sister was “different,” and has lived with Kath’s reality for her whole cognizant life, during her intensely important developmental years.
To understand their feelings about being siblings with a different-abilitied sibling, I asked each of them 4 questions. I told them I wanted their answers but I’d understand if they didn’t want to give them. They all answered. Here’s what they said, in their own written words:
Q: When Kath was first diagnosed what did you think? Feel?
Nick: First thought was, “Why does this sort of thing happen to someone who hasn't spent a second on this planet yet?” Felt jaded by the way nature works. A newborn can have this handicap, yet some people can get away with murder and live happily, where's the justice? When it comes down to my thoughts on Kath, my first thought was "Okay, so your sister might have a small disability, let's do what we can to let her know she's doing great. Gotta try to keep her spirits high while I learn the least stressful ways to interact with her, so that life is as easy as possible for her. She unfairly has it harder than the rest of us, but that doesn't mean life needs to be bad for her.
Chris: When she was first being diagnosed I was, at first, in Nicaragua. I was focused on how miserable and insane I felt at the time. That kind of leads into my response to the second question, because I have always felt guilty about how self-involved I was then. You were trying to talk to me about it and I would say something like, “I’m sure she’ll be fine,” and then pivot to The Misery of Chris: Volume III (I think I’m up to volume thirty-something now). I was kind of messed up then, so when I was told I really didn’t feel anything at all. At first. It just sounded like someone had mentioned she was blonde. I think I remember thinking something like, “Alright, this is now the case. What does this change? At the moment, nothing.” That is the level of damage-control I was operating at.
When I began therapy after getting back from Nicaragua, I started to work through it. I began by reevaluating my answer to that question. It really didn’t change anything, for me. It was not like she had suddenly had a stroke and been hurt – she was born like this – so my relationship with her would be the same regardless of the diagnosis. However, it meant that you, Roger, and Alex would have to reorient your lives. You would have to begin therapies for her immediately, struggle with schooling, and rework all of your expectations for her life.
I really didn’t process the enormity of her diagnosis until much later. Maybe I’m still not entirely done reacting to it. My first impulse is always to comfort. To offer help, advice, encouragement. It ain’t always useful, but it’s probably a lot more for me than for you all. I’m as much comforting myself as I am you. Through therapy I got to admit that her diagnosis made me sad. It was something I never wanted to admit – she’s my fucking sister, and nothing about her is less than perfect. She has this problem, she’ll figure out a way to lead a happy life. I just fucking hate how hard it will be for her, and for you guys, to get there. It ain’t easy to begin with. So, yeah. It made me feel sad. Eventually.
[When Chris says he was miserable and such, he was going through a very difficult time with health and personal issues. Dealing with a negative reaction to his malaria immunization without access to his usual health care options, including me, in this faraway third world country demanded much of his mental focus.]
Alex: All Those Little Moments with the Most Wonderful, Lovely, Confident, Stroke Survivor. I don’t remember when she was first born and how I felt about her diagnosis. All I remember is loving her to death and eating the cutey. Hugging her neck off, probably making her think ‘Enough already!! Is this how humans act!!?’ I still do.
Q: Do you ever feel guilty, even as a stray thought? Share?
Alex: Sometimes I feel like she gets a lot of attention. But I don’t like those emotions. When I feel those emotions a little voice speaks in my head ‘No. That’s not true. Don’t think of that way. It’s not true.’ I never share these thoughts because I don’t like them. I feel really guilty about these thoughts. I feel silly when I feel these thoughts because I think to myself ‘I’m 9!!! Not 2!!’
Nick: Every rare so often, I find myself getting aggravated at something small that she does, but that's only because I forget for a bit that she has any sort of differences. I feel that otherwise, I've got a good, conscious head on my shoulders, so it's never anything sinister. She can be just as crazy as any other kid her age, but never really much more than that, so I've never had to worry about thinking dastardly things. Call it good parenting.
[Nick used to pick up Kath from her special education preschool program every day for several months and was her sole caregiver for a few hours every day while I was working – all after she had an exhausting day at school. This made things additionally difficult for him, on top of the fact that Kath was still having difficulty with transitions and he was diagnosed at this time with his TBI.)
Chris: I am never there. That’s the root of all of my guilt. I went to New York rather than DC [after college] in part because I would be closer. But then I wasn’t, anyway. I get caught up in my own stuff. My recent girlfriend. School. Work. Lack of work. Lack of money. Procrastination.
She ain’t my kid, so I never did that whole imagine-her-whole-life-while-she’s-in-the-cradle thing. Thank god. I’m not sure I could totally recover from the crash of those unmet expectations. I don’t feel guilty thinking that, though. Kath will do what she can and what she wants. You guys will do your best to help her do that. Maybe she’ll overcome all hurdles and achieve amazing things – she wouldn’t be the first person with CP to rise to fame or fortune (http://www.disabled-world.com/artman/publish/cp-famous.shtml). Maybe she’ll be happy doing something else. Not everyone can be president, and not everyone wants to be. She’ll be great regardless, and that’s always been my position. She has a strong support network and a happy home. She’ll do fine.
Q: How has it effected your relationship with her, me, Roger, your other siblings? Other people?
Chris: I’m not sure it has. Like I said above, it’s not like this was something that happened to her. It’s who she is. Couldn’t be otherwise. So, my relationship with her is the same it would be regardless. With you, I couldn’t say. We might be closer because of it. You’ve broken down a lot of the walls that were between us, but that might have happened anyway as I got older. I am of the opinion that stressful circumstances bring people together, but not having really been there at all might be skewing my opinion.
Roger and I have the same relationship, I think, that we would have had otherwise. Al and Nick, I would say, are the same. Relationships are individual things and Al and I, Nick and I, Roger and I never really had to do anything with the diagnosis. Each of us, individually, did. But never as a unit.
The relationship that changed the most for me because of Kath was probably my relationship with one of my old girlfriends. I was struggling with my guilt about never being home and I blamed some of it on my girlfriend, I think. I don’t know. I tend to deal with things subconsciously, and whatever I am working out will usually manifest itself in how I treat those around me. My girlfriend was often around back then.
Alex: It hasn’t made my relationship with anyone, different. In the morning I just want to read. Honest.
[Alex often wakes up and stays in her room in the morning, not as a way to avoid she’s saying, but because she loves her books.]
Nick: A friend of mine said the other day that he thinks that any child with a known deficiency (as he put it) before birth should be required to be aborted. Instead of choking him out in the middle of the room, I furiously went for his throat verbally until he understood, "That's my family, my sister you're talking about. Don't ever F*** with my family." Mostly, it's a subject that I only push when it's already been brought up by other people, but many people (who I'm not ready to beat to death because of their dumbfounded opinions) begin to see why I say things like, "It's really not that big a deal in the long-run."
As for our family relationships? It's hard to put a finger on that exactly. With Kath herself, I feel like I have the same feelings for her that I would any other sibling of mine, I care just as much about her as I do Chris and Alex. There can be tough times, but there can be great times. With Chris, it is an unspoken agreement that both of us would commit murder if she were ever hurt by anyone, and with Alex I believe she understands that I try to give her a tad bit more leeway. As with you and Roger, I feel it's pulled us all a bit closer together. We're all in this together (with poor Kath getting the worst of it) so we work together to make it happen. Since I'm only human (and a loudmouthed one at that) I complain every so often, but mostly about how unfair fate can be.
Q: Has it changed you?
Nick: When we first found out about the CP, I blamed myself until about 2 years ago. I created a lot of stress right around when she was born and with my vague understanding of the human body, I assumed that could be the only cause for such an issue. More recently I've taken the approach that you cannot pinpoint one thing that creates a disability like that, so I cannot individually take all the blame, nor should I be looking to point any fingers about the matter anyway. In a time when I've had to relearn how to do a lot of things [because of my own head injury], she single handedly taught me to stop, take a deep breath, and think about what I'm doing/saying. On the other side, it hasn't stemmed the quick development of my cynical side. As alluded to above, the entire concept of an unborn child developing a situation that makes her life much more trying just isn't fair. You could say it helped ruin me, religiously. I knew that the idea of a conscious and caring all seeing God was complete bulls*** for sure. Maybe there is a God, but if there is, he messed with my sister so I'm obligated to kick his ass. I will also mention that it helped me learn a lot about my own disabilities. Something could be bugging me about my brain or the way my body works now, and I'll see her dealing with something exponentially harder. It just makes you sit back and say, "Oh...that's how she does it...that makes tons of sense!"
(Nick mistakenly thought that his accident at school, which caused his Traumatic Brain Injury, and the after-stress was what caused me stress while I was pregnant—he thought that caused Katharina to have her stroke. It did not.)
Chris: I’m sure it has. A man is an amalgamation of his experiences, actions, and beliefs. Kath being born definitely had a bigger effect on my life, but Kath’s diagnosis changed me as well. Aside from the basic, yeah-I-know-more-about-CP-and-in-utero-strokes bit, I imagine it has made me more patient and understanding with people. You never know what issues they’re working through – physical, psychological, etc. New York may have beaten that out of me.
More intimately, Kath’s diagnosis has made me think harder about what kind of person I want to be with. The ability to roll with the punches was not really something I thought about before her. Part of the reason a recent girlfriend and I decided not to get married was that I insisted that the person I eventually settle down with be someone who could see themselves trying to rise to that challenge, or at least someone resilient enough to bounce back from it. She was, in her own words, too selfish to put someone else before her career (I’m not judging – she’s young and she wants to do that first and I completely understand). So yeah, I’m looking for a superwoman.
But I think the diagnosis has changed me much less than Kath has. The kid is six and she is just living. I’m twenty-five and I have a tough time getting through the day sometimes because I hate not waking up with my old girlfriend next to me. Kath has much larger problems (a “crazy hand,” [her stroke-affected right hand] for example), and she just does. I lay my head down and give up at difficult tasks. She freaks out sometimes when things get too frustrating, but she’ll come back at it. The girl floors me.
It always sounds stupid when I say stuff like that. I remember my father telling me a story about my uncle. Dad visited him in the Dominican Republic a while back and got upset when he saw a kid playing with an old tire. He said something stupid, like “Oh that poor kid, he has so little he has to play with a tire.” My uncle responded with something equally stupid, like “The worst possible thing you could do to that kid would be to give him a Nintendo. Look at him, he’s happy with his tire.” Dad was stupid for approaching the act of a kid playing with a Western mindset (you have so little you must be miserable). My uncle was even worse for glorifying the child’s poverty, because if that kid is out playing with a tire, he’s probably not in school, not vaccinated, and not going to live a long, healthy life. Cultural dissonance, excess TV watching, shallowness, and the like are all problems that people with Nintendos can afford to have. They are first-world problems. Let’s solve the real issues first, ya know? Get the kid some goddamn shoes or something before you worry about corrupting his culture, because ringworm hurts more than Hollywood’s influence. Point is, I really am not glorifying her CP. I am glorifying the way she deals with living with a disability. Which may be equally pretentious, but I’m pretty secure in it. She is too young to really understand the full extent of her disability, and it will only get harder to cope with as she gets older. But if she continues to approach it the way she is now – stubborn and with an eye on play – I think she’ll be fine.
Alex: It has changed me. I know more. I know how to act. It makes me understand diagnoses. I get pieces of how her life is. Other people talking about their sisters and brothers at Bus Stop Club [a local nonprofit support group for siblings with disabilities or illnesses] and it makes me see pieces of how her life is going. I love her soooooooooooooooooooooooooooooooooooooooooo oooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooomuch. So much I have to hug her head off and squeeze the pudding out of her. I have learned how to be a good big sister. I know how to act with things. She has taught me many things to use in life.
Nick: The most important thing this entire experience has taught me is that a human being is a human being, regardless of the differences they may have. Her brain is literally shaped differently, yet she still harbors the same things that are the quintessential human properties. She cares, she loves, she is happy, and she knows we'd do anything for her. She harbors love and companionship and really isn't very different from any of us. If I weren't trained as a prose writer I would have used the word 'condition' to replace every word like 'disability', or 'handicap' because she isn't less a person or worse than anyone, she is just built differently. She isn't that little girl with an issue, or the one to handle with oven-mitts (although everyone is that person on occasion), she is one thing above all others to me. She's my sister.
When I read their answers I was blown away. I didn’t know what to really expect though I think I had maybe expected some blasting of me as a parent and how I didn’t do what I should have for each of them, during their times of need. I almost expected that whatever I received would probably be painful to read and hear. I expected to cry. And I did.
But for a different reason.
When I read each one I was overcome by a common thread. Of course I always knew my kids were amazing human beings (I’m their mom after all!), but they each have such a depth of compassion and an ability to see past Kath’s disability to her abilities and strengths. They seem able to find a strength through her.
They also seem to have found a way into understanding and connecting with others that I think will make them better humans.
Through their eyes and through their words I am able to see something they may not be able to see, until they each read the others’ words, and that is that they are stronger than they know and they each wrestle with their own feelings of lacking something. But when they each read their siblings’ words they found a strength and admiration of one another.
They never realized what the other one was going through. Maybe I should have encouraged and set up a therapy session for them, individual and as a group. Maybe if they each had time to talk to someone as a family they could have leaned on one another in a different way. I was so focused on Kath, day-in and day-out that when I had time with them I tried to separate out and have individual time with them each. And since they were already separated by age and local they didn’t have that time to really sit and talk. (Insert more mom-guilt here.) They each went through some pretty major events at the same time as Kath’s diagnosis. And Kath’s diagnosis rippled them.
But it all turned out okay regardless. Both boys even mentioned they felt closer to me, despite what I thought were my failings.
The ripples didn’t affect them in the ways I expected or even imagined. She made them reflect…more. She made them step up in their own lives…more. She made them re-evaluate their own limits and strengths…more. She made them question who they were, what they were doing, where they were and who they wanted to spend their time and future with…more. She made them look at a bigger picture. She made them consider that ‘normal’ looks differently than they first learned. She made them step up for those who don’t have a voice. She made them step aside and accept. She made them accept their own ‘special needs.’
I have begun to say that we need to treat everyone as if they have a head injury. And I don’t say that to be flippant, but we really don’t know what anyone is dealing with or how they are really dealing with the load they have been dealt.
Sometimes we get a peek inside when we just ask.
And that is pretty amazing and a great start to rebalancing.