Having a kid diagnosed with something scary changes a person. Sometimes in ways one might expect, but in unexpected ways as well. As does every traumatic thing we go through. I think about who I was before our lives took some of the many turns they did in the thirteen years Bobby and I have been making a life together, and realize I am both glad that person is gone, and that I envy her innocence.
She was kind of a jerk sometimes. Not intentionally, but every experience I have had has given me a springboard from which I could launch into empathy for others in situations she could not have fathomed. It's not like my life could not have been much, much worse. There are many horrors I have no springboard for. I have never been sexually abused or lived with the insidious and often unacknowledged racism that is an ingredient in the fiber of every person's life who belongs to a minority. As a kid, I was overtly bullied only a few memorable times. I've never had to deal with a disability.
We haven't been displaced by war, forced to live in a primitive refugee camp, haven't crossed a freezing, rough body of water in an overcrowded dingy, putting pool floaties on my babies in case we capsize, only to have our new reality become that we are not welcome anywhere we might flee to. We know exactly where our children are. We know whether they are alive or dead, comfortable or starving apart from our care.
Ok, so there is a lot I can't even begin to empathize with. A lot.
In fact, my life is pretty freaking peachy. I have the luxury of belonging, of a sense of place and purpose, and am not cut so deeply by past experiences I am debilitated and cannot move forward.
But there are things I have experienced. And experiencing them changes a person. Maybe not always for the better, but it shows a person that to judge someone else is to assume they have the exact advantages you have had. And that such an assumption is probably false.
I am familiar with the almost unwinnable battle that is mental illness and addiction. People I love have been forced to accept that their illness, not being physical, will never be understood by the vast majority of the people around them. The deep self-loathing, the flashes of clarity that the pain they are causing to those closest to them is not entirely their fault, the fine line one must walk between forgiving ones self for the effects of the illness and permission to use it as a blank check for more damaging behavior, the ultimate acknowlegement that all one can do is to choose to love, to accept love and understand that someone asking for time to heal from the pain caused by your illness is not a personal rejection, and to accept help in whatever form it comes.
The effects of faith has been a big part of shaping who I am. Specifically, the effects of loving people with opposing faiths, and the buffer zone between them. The sense one develops for the almost imperceptible hesitations, the spaces between the lines that say so much. The feeling that one is valued more or less as a person because of beliefs they hold and the ones they cannot hold. The slow dawning of the realization that one either believes wholeheartedly, or tells beautiful lies to one's self. Questions do not go away when one simply refuses to acknowlege them, so one may as well ask them. Understand them. Learn from them. Accept that sometimes the lack of answers is, in itself, an answer. Our questions show us who we are even more clearly than our answers do.
The discovery of what it means to love and to be loved, this has been a big part of my last decade. I spent the first five years of our marriage sabotaging us with my insecurities, with my constant need for others to determine where north was on my internal compass. I let us fall apart through so many emotional betrayals, then asked my husband, in so many tests, if he could possibly love me enough to want me after I had gone to so much effort to be unloveable, to prove myself right in my belief that I was not worthy. He left me breathless and my world tilted when he gathered me in his arms as each storm abated and said he would always love me, even when he couldn't keep up with the crazy. After hitting a wall and realizing I couldn't live with the self-loathing, that I needed to see myself as a "real" person, to stop acting and start being authentic after years of trying and failing to be what I and others wanted me to be, I threw up my hands, dropped the act and showed myself as I was to the world. The world didn't even notice, let alone recoil. That was when I realized it wasn't about me. I realized that, as I was using others to determine my north, they were using me to find theirs. All around me, people are...me. I am not unique in the least. This was a profound, life-altering realization. Obvious, yes. As I was looking for kindness and acceptance, for any indication of where I fit, I was too self-absorbed and distracted to give those same things to all the floundering souls around me.
I wish I could say the eureka moment was an instant and complete life overhaul, that I have lived facing outward instead of inward since that moment. Let's be honest. One doesn't just change three decades of insecurity overnight. But the more I stick my neck out, the more vulnerable I make myself, the more honest I choose to be, the more people just...don't notice. They live their lives as if they have better things to do than attack me. Whodathunkit.
There are people in my life who show me north. Not by some tug on an internal needle, but by being the northern lights. Their own Aurora freaking Borealis. They dance, arcing and slicing through their sky, and I stop and watch in awe, and realize again that it so isn't about being worthy, or being lovable, or being envied, or being admired...it is just about being. Not expecting more of myself or of anyone else than the best versions of us.
My mom always told me I couldn't please everyone or make everyone like me, but I spent my teens and twenties trying to do so anyway. In my teens I tried to be smart so the grown ups would like me, pretty so the boys would like me and funny so the girls would like me. I wish so badly I had realized that the exact thing I thought I could not do as a younger person is the very thing that, weirdly, makes (the right kind of) people like me as an adult. And that thing is...? Wait for it...
Honesty. I know, rocket science, right?
It turns out, almost everyone wants what I want. It turns out, frizzy hair is easier to connect over than shampoo commercial locks. It turns out, I'm not the only person in the world who wears yoga pants three days in a row and throws a towel over the spot where the kid peed the bed so I don't have to change the sheets in the middle of the night. But I wouldn't know that if I hadn't volunteered that information about myself first, and risked judgement to find solidarity.
But as for the specific ways Daniel's cancer has changed me...
I squirm a little when people call me strong. I suppose I'm not curled in a fetal position around a cupcake and a bottle of wine (all the time), so I can claim some small amount of strength. But so would you. When the fecal matter hits the fan, people don't automatically get strong, they just compartmentalize. You hear "Your child has cancer", and you think, "Is this actually happening?" At the exact same time you are also thinking, "If this doctor doesn't leave the room very soon, how can I make absolutely sure I fart silently so I can blame it on the kid, and also gently enough it doesn't pop a stitch?" (Well. You might think this if you not completely classy, are nine days past having pushed a watermelon-sized human out of a not-watermelon-sized orifice, and are still somewhat held together by stitches down there with a digestive system still partially located up in your chest cavity that has not yet adjusted to having your insides to itself.) Because life really does go on. And you will go on with it. Nothing stops the progression of one day to the next. You can flip out if you want, but deep down, you know that it takes an immense amount of energy to flip out and then put yourself back together. Best to just never flip out in the first place. It's not strength. It's just math. It's not strength that keeps you from sobbing until you are hiding in the shower, it's that you lack the strength to handle the embarrassment of complete strangers seeing you completely lose your...fecal matter, on top of everything else.
I am often shaky with feelings of relief, having escaped a worse diagnosis. Other kids have died. Relapsed. Lost body parts. Are permanently disabled. Died. And did I mention died? Life is so incredibly precious. Sometimes the reality of Daniel's weight in my arms, the coating of fuzz on his warm head pressed against my cheek is so life affirming it takes my breath away. He is so incredibly real. His voice plucks at my internal strings. He is here. And in that moment, and every moment I remember to remember it, that is enough. Everything else is just noise.
He pretty much tries to burrow back in my womb sometimes. And sometimes, I wish he could. I have true anxiety about letting him out of my sight. I am not entirely stable when I'm not around him to see with my own eyes that he is okay. I don't know how B leaves for work and trusts me to keep these two fragile humans okay all day. I know B is a good dad, but I still leave him with an almost offensive list of hazards to watch out for when I leave them with him. I know someday I am going to have to get past this unhealthy codependence and this terrible knowlege that lightning does indeed strike. That is someday's problem. Before he was diagnosed, I did not have this possibly unhealthy need to protect him from everything forever. But now, I cannot even wrap my mind around being able to leave him with anyone else and take a vacation somewhere, sans kids. It is eerie just being here without him the hour and a half he is in preschool. It makes me imagine an alternate reality where he is not in my life and I feel an overwhelming need to find him and squeeze him immediately.
I feel incredibly guilty whenever I complain. He's alive, isn't he? What more could a woman want? But also, other moms think I am judging them far more than I actually am for complaining about their non-sick kids. I mean, I get it. Your kid being a totally healthy little jerk is truly, legitimately disrupting your life. Mine gets legitimately disrupted when my sick kid is a jerk, but I can't say that to a mom whose kid will never, ever have a chance to be a jerk again. Yeah, I really do think, when you say that, "what must it be like to have that be my biggest problem?" But you think I am thinking it in this voice:
When I am actually thinking it in this one:
B and I are closer than before, but also harder on each other than we were before. Especially with decisions concerning the kids. We seem to have developed this understanding that there is no agreeing to disagree. No submitting to the other for the sake of peace. Not with medical decisions. The stakes are too high for politeness or submission. What to have for dinner, sure, that we can compromise on. But not when to call in a fever. Not whether or not to go with standard treatment or a clinical trial. Not whether to take the time to drive Daniel to Children's or go to a more sketchy but closer local ER. We present our case to the other, work out the pros and cons, throw our most convincing arguments against the other's most convincing arguments until we reach a consensus, and are both sure we are doing the right thing. Because if we should happen to make a decision that would somehow end in harm to Daniel, and it was a decision made by one of us and merely given in to by the other, neither the one who made it nor the one who disagreed but didn't challenge it would be able to forgive themselves. At least if we unite in making the wrong decision, we will be able to work through that together.
And last is a blessing that usually comes with age, but sometimes gets sent priority to those who need it sooner. Even with my past experiments with authenticity, this experience has given me the ability to finally, finally just let the chips fall where they may. The one thing I do not have the patience for right now is drama. It is just easier to shrug and walk away. Maybe it is just the exhaustion. I don't now. Bigger fish to fry. I am too tired to accommodate righteous indignation. And that is freeing.
Okay, enough of the shower time reflection. My legs are super smoothly shaved and my hair is squeaky clean after having composed all that in my head.
As for news, Daniel has finished his first 29 days of maintenance. He had another spinal tap on Friday. His counts were all in normal range, including his ANC, which was 2,200. Too high, in fact. The optimal range through maintenance is 750-1,500. They won't change his med doses during this first 84 day cycle, they will just observe to see how he is responding to it. I got the impression that the staff is losing patience with his night time nursing, suspecting I am sabotaging the oral chemo with milk. They may be right. Now that nausea and nutritional deficiencies are less worrisome, there is more pressure on me to wean him.
It's as if he knows this, and compensates by upping the demand. He is also going on almost four weeks of boogers and coughing. The plugged nose changes his latch and brings back the aversions I felt during pregnancy. I have been using this opportunity to teach him about bodily consent. I have been using "I don't want to" or "I don't like that right now" as a perfectly legitimate reason why he cannot nurse right now, and helping him process the disappointment. At bedtime, I have started nursing him until I feel him relax a bit, then make up an excuse to leave the room, promising I will be back to check on him. He usually falls asleep on his own. It's a baby step, but a major one.
His potty learning is almost impeccable. He almost never wears diapers anymore. Again, he has spared me a rite of passage by doing something on his own that I was supposed to teach him. Not one bribe or reward, just a slow realization of his body's signals and a desire to do things adults do. Right around his third birthday he started either going all night without a wet diaper or waking up to go potty. I say almost, because about once a week he will have an accident, which bothers him far worse than it bothers me.
The difference between these two babies is remarkable. After Daniel, Alex astounds me with both his lack of mechanical prowess and his blooming social skills. I have suspected Daniel might fall ever so slightly on the autism spectrum from a young age, but did not really have anything to compare him to except my peers' kids. His Early Childhood evaluators have also noted a slight hesitation to make eye contact and initiate interactions with others, in combination with an easy grasp of mechanical concepts and excellent fine motor skills (he can stack blocks much higher than expected for his age, easily open and close jar lids and perform other specialized motions, and sail through other tests.) This doesn't concern me in the least, knowing that the spectrum is just that- a spectrum, and he still has the ability to maintain healthy relationships in addition to being utterly enthralled by moving mechanical parts. But this is another area in which I am so thankful to live in the age we do- we have greater understanding now than we have ever had of the rich tapestry that is humanity, and the ways in which none of us fits a mold, all of us uniquely amazing. But it also reminds me how important it is that I provide him with touch, keep him engaged, model empathy and emotional maturity, and encourage him to interact with humans of all ages. The photo at the top of this post is of the look on Daniel's face while mesmerized by moving mechanical parts. This was on a carousel at a local festival Valentine's weekend.
Alex is the one who makes up silly games in his baby way, then manipulates us into playing them with him, who possesses a vocabulary at ten months Daniel did not achieve until around sixteen months, the sheer noise of which Daniel never did make, who dissolves into giggles and squeals upon making eye contact. He thinks the big red rubber ball that I could never truly interest Daniel in is the most amazing thing ever. At the age Daniel was discovering organization, studiously lining up his toys, showing utter disdain for icky sticky stuff on his hands and face, Alex is eating dirt, squishing bananas between his fingers, playing in mud, and has absolutely no concept of organization. I am glad to see Alex unbothered by the many things that are sobering to Daniel, even as Daniel melts my heart many times a day by taking life so seriously. A son of his father, the bigger one. As for the smaller one, it is a daunting task raising a small version of myself. He is all over the place, mercurial, whimsical and entertaining, but also completely dependent on others to reassure him when his world so frequently gets upended. I want to freeze their innocence. I don't want it to end. I am so not ready for big kid problems.
But it keeps coming. Life, that is. Every time the sun rises, you are either dead or you experience change.
Our latest change is "school". It's not really even preschool, just an hour and a half of a therapeutic play class two days a week at a local school, in a classroom and playground. Daniel loves it. The five days a week he does not go all have that moment in the morning when he realizes school isn't happening, and he gets sad, sheds some tears, and has to be distracted. But I kind of hate it. For that hour and a half, I have to trust strangers with him. I know this is a part of most parents' every day life, but I have spent nearly every waking and sleeping moment of the last three years with him. I know that time is coming, that every moment I spend with him now is to ready him to leave me, but he is far more ready for it than I am right now. And most likely always will be.
I'll leave the state of the job search update for next time. Basically, we don't know enough ourselves to talk about what we are planning to do. At the moment, B plans to quit next week. After that, we will start pursuing all the things we have been considering as possibilities, but have been unable to even research because of the insanity of the existing job. It's almost as if we need to jump off the cliff before we can start grabbing for tree branches to break our free fall. We just hope that one of those branches we grab for will shake the bushes enough to have an opportunity fall out. Preferably one that can get us back on track with our whole "plan". Go ahead and laugh. You won't be the only one. We made plans, and fate laughed. We can take a joke. We just hope we can still get the last laugh.
No comments:
Post a Comment