Tuesday, July 30, 2013

The Results Are In... It's All In How You Look At Things

About two weeks ago, the call that I had been waiting for finally came. After weeks of despair followed by weeks of fundraising excitement followed by months and months of silence, it came. And I was caught off guard even though I'd been expecting it. It came very late one sticky, sweaty, easily 98 degree afternoon after a truly shitty day at the office and I was racing through midtown trying hard to concentrate on other things when my phone lit up. I recognized the number and I ducked into an air conditioned sports bar in the West 30s and locked myself in the bathroom - the first thing I thought of, somewhat absurdly - and I plugged my ear with a finger. "Hello? Okay, yes, I can hear you now."

The genetic counselor, a thoughtfully sensitive woman with an unexpected and very thick Scottish accent, told me that the results of the comprehensive, impossibly expensive genetic sequence test indicated absolutely no abnormalities in Teeny's genetic makeup. None. This is the best news we've had since Teeny's MRI last November. It's the result we wanted. And yet I couldn't help myself; I burst into tears.

The counselor said the cause of her issues was therefore probably one of two things: either a static event in utero that we may never understand or something so rare or subtle that even the gene sequence test is not sophisticated enough to detect it. The latter was unlikely, she said, but all the same the geneticist's office wanted to see us annually to evaluate her for any new testing that may become available over time.

The good news about the static event hypothesis is that whatever happened to Teeny happened once, in an instant, and it won't get worse. Some kind of random illness or injury would not cause a degenerative, progressive disease. With a case like this, some -- or a lot of -- recovery is possible. And Teeny has already shown so much progress that if this our reality, it means things can only continue to get better. It means there could be no ceiling to the success she can achieve. This is what our neurologist suspected all along. There are other schools of thought, and I'm still waiting to hear from the various cerebellar experts who have been in intermittent contact with us over the past six months. They have different theories that we may at some point explore. But for now, I'm going with the static event.

I think any parent of a special needs kid would understand why this news made me cry. I think maybe we measure our milestones differently than other families do. It means the long hard road is going to be longer. Maybe not harder, but definitely longer. And there is no map for this road, no milestones to look for to gauge Teeny's progress. So even though I am over the moon thrilled that we are not facing a diagnosis of genetic pontocerebellar hypoplasia, deep down I never really believed that was an option anyway.  And now because we don't have a true diagnosis, determining a prognosis is going to be much harder. Just thinking about it exhausts me, because it means that I have to accept that there will be no acceptance. There will be no rest for this weary family. I put my best face on when she's struggling because if I can't do it, how can I expect her to do it? Every single day I have to find the energy to be a cheerleader for my girl. Every day I have to be her advocate. Of course I do this, and I do this with all the love a mother can have for her child. But it's an understatement when I tell you that it's really, really draining.

I am a doer, a fixer. I ponder things until I come up with potential solutions. I have no patience for the uncertain. I don't like messy. I do not sit well with discomfort; I rationalize and analyze until I come up with an explanation that makes sense to me. I can handle anything as long as I feel I have all the information there is. I can't bear to be in the dark; I just don't know how to not have all the answers. And of course I always feel that it is my responsibility to fix not only what is broken in my life but also in the lives of those I love; it's like I simply cannot rest until I find a solution. But life doesn't work like this. It's taken me 40 years to understand that I can't fix everything and that not everything has an answer. And when I look at my child, this beautiful girl who is so present, so aware, so there, and I can't unlock her from the cage she's trapped in against her will, my heart bursts. At nearly two, she is frustrated sometimes beyond the point of consolation.

She tries so hard and makes such slow progress that tiny things can set her off. There are times when she needs constant reassurance and can be unbearably clingy to me, calling mama mama mama and holding her arms out to me, as if she's asking me to rescue her from this imperfectly formed brain, this weakened body. I can't stop her cries. I can only hold her as she screams and tell her I love her, that this fight is worth it, that she can do it. These are the hardest parts of my day, but I keep a brave face for Teeny.

On days like this, I maintain my optimism and hope by looking at how she's blossoming. She has new words: stop, step, mine, no. A few months ago we'd ask her to point to her sister and she couldn't. Now I say "Where's Bee?" and she turns and points right at her. She points to Daddy and to the cats and a half dozen other people and things when you ask her to. She can bring favorite items to you upon request, and if you ask her simple yes or no questions, she answers with an emphatic nod or shake of her head. She communicates well with body language, facial expressions and her hands. Most notably, she protests using all three when her sister snatches something from her -- like any little sibling should.

A few weeks ago, I took the girls to visit relatives for the weekend. We had a lovely visit in which I did absolutely no work whatsoever. No cooking, no cleaning, no therapies, nothing for three days. They went to the beach, I napped. They gardened, I napped. And so on.

On the way back home we stopped at a rest stop. Pee and coffee for mama, pee and water for Bee, diaper change for Teeny. Bee spotted a display of brightly colored lollipops near the register. Pointing them out, she made her usual demands and pulling her away, I gave my usual response. But then I had a sudden feeling of oh what the hell and we turned around and I let her pick out a lollipop. She wanted orange and after we ripped off the wrapper, all was right with her world. Back at the car, I took the lollipop from her "just for a second," so I could manipulate the car seat straps and buckle her in without getting the sticky thing all over me. I handed it absently to Teeny, who seized it, shoving it in her mouth hungrily. When Bee was in her seat, she grabbed it back. And Teeny howled with the unfairness of it all. She balled up her fists and got all red in the face, wailing uncontrollably, and next thing I knew they were both unbuckled and we went back and bought another orange lollipop. I was completely frazzled by the time I got the car going again, but they were both totally happy. Whatever.

Sounds minor. Score 1 for the kids, 0 for the parent. Maybe that's all it is. But consider, for a moment, what it means that Teeny is able to eat a lollipop. That sugar is a powerful incentive should be no surprise to me, but really, think about it. She knows she wants it, she knows she likes it. Highly motivated, she can get it in and out of her mouth. She can hold it, a small and thin object, weighted on one side. She dropped it a few times (as evidenced by the blue stuffed Cookie Monster fuzz I found on it when she finally discarded it, not to mention the sticky spots all over her dress and her car seat) but managed to pick it up again and feed it to herself, while buckled in tightly and while knowing that I could not turn around to help her. Maybe that doesn't sound like much to you, but all of that is pretty significant for someone who struggles with motor planning the way Teeny does.

In the past month, she's had another Botox treatment, so the tone in her legs is reduced. Botox means general anesthesia, which is scary for Teeny and much scarier for me, but it's an outpatient procedure with possibly the best physiatrist in the country (who likes to write her initials at the injection sites) and the staff at her hospital takes very good care of her.

Bored in the exam room before anesthesia:

Immediately after:

Her assistive tech equipment arrived, so she now has a bath seat (essentially useless), a chair with a desk (adorable and very functional as both desk and feeding station), and a gait trainer (which is a $3,000 monstrosity that she detests but should eventually be able to help her develop the confidence she needs to begin to walk). She got new braces for her legs, having outgrown the last ones. The use of her hands has improved: she presses buttons, puts things in and takes things out, and still works to feed herself with a fork. She might not be walking yet, but this kid really is moving and shaking.

Hating the gait trainer:

New braces:

The real issue here is not Teeny herself, but me. She's fine. She gets it. This is her life and it is what it is. Sometimes things suck and she's fussy and cranky, but most of the time she's pretty damn happy. I should be no different. Yet I seem to find myself time and again in complicated situations which never have easy solutions. In other parts of my life I tell myself I can't expect myself to know what is truly unknowable, and that I should live and love and act in the moment. If there's one thing I know about myself as a human being it's that unrealistic expectations are my Waterloo. But like the Dodecahedron -- the boy with twelve faces in The Phantom Tollbooth -- says, it's all in how you look at things. Sometimes I have to check in with myself 100 times a day to stay calm. If I look at any given complicated situation as one to stress about, fret over, squeeze of all the love and happiness, then that is how my psyche will process it and that is what it will become for me: just a source of stress and unhappiness. But if I look at it differently, if I treasure the moments of bliss when I have them instead of comparing them to the moments that are less so, then I am living my life between the raindrops.

I love both my girls, and they love their lives. Writing this blog, I come back to that again and again and again. If Teeny is progressing at whatever pace she is progressing, I should be celebrating. It's okay to be frustrated when things move slowly or when there are complications. But she brings so much unbelievable joy to my life. Is it any wonder that I want more of it?


  1. I just have to say that I love this post. Love it. It is so hard for us parents watching our little ones struggle. I get so overwhelmed with the...hugeness of it all, of making sure I am doing my best as a parent to my boys to ensure they have every opportunity to become whatever they are meant to become. And without the road map telling me what that final outcome is supposed to be, how do I know if I've done enough? Plus, there is the responsibility of preventing them from being so bogged down by therapies or corrections so they have the chance to just be kids.

    It's an awesome responsibility that I (and you, I imagine) don't take lightly.

    1. Stacie, thank you for this comment. I would love to know more about your son's (sons') struggle and what that looks like for you. I REALLY relate to what you said about finding time for them to just be kids. It's not easy with school and therapies and all kinds of appointments, but it's one of the most important things we as parents can do for them.

  2. Aimee, I LOVE this post, love your writing, and though I am not a parent (yet), I resonate with your voice as a commander of Soldiers (when I first described my responsibilities to Shaun, he remarked, "Oh, so you're like the Troop Mom..." yeup, in a nutshell!) Keep on chugging, your strength inspires more than you know.
    jUlz MacKnyght

    1. Thanks so much jUlz. Can't wait to hear about your parenting journey when it happens! :)


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