Start Spreadin' The News... Part One

One morning back in November, Johnny nudged me and said, "You know, your website needs some love. You haven't posted since August." And my thought was, what?! How is it November? And now here we are at the end of January and I have a zillion half written entries, abandoned because they felt trivial or because another big thing came along and sidetracked me. Since August, I have been through some of the toughest days of my life and since August I have also been through some of the best, most delicious, most wonderfully precious days too. So here are some highlights.

Before the end of the first week at Bee's new school, we learned that kindergarten is indeed a transformative year. Last year in her neighborhood nursery school we dropped her off at 9 and picked her up at 1. She had naps and playdates and snacks and juice boxes. She was a baby.

Now our little Bee gets the school bus at 7:20 every morning at a stop over a mile from our apartment and the bus drops her back off at that same spot at 4:20 in the afternoon, meaning we leave the house with her before 7 am and she returns -- on days she doesn't have anything after school -- after 4:30. At five years old, she works longer days than most adults I know. What's more, she has homework every night that involves reading, writing, math, drawing and more. This is so exhausting and she is so tired that she's ready for bed at 6:45. And because I've only barely walked in the door from work by then, that means she's up at 5:30 am doing homework and getting ready for school and I'm up with her so I can spend some time with her. So nowadays our entire family of spooky night owls is in bed before 10. When did we all get so old? 

Bee is tall now, and more slender. She has long hair with a black streak and she wears hoop earrings. Some days, she's very concerned about her appearance but other days she prefers that I pick her clothes for her. She's still into her Twinkle Toes and all things glittery and sparkly. She's into magic: everything from the Rainbow Magic books to Harry Potter. She would wear makeup every day if I let her.

She is reading now -- slowly and rather reluctantly, if I'm honest, because she would much rather be read to -- and writing. She is showing a real talent for drawing and art. The girls are sometimes mean and petty, so she has had to work through a lot of interpersonal issues already. And I am proud of her for holding her own. She learned to ice skate, started riding a big girl bike (20", no training wheels) and my personal favorite, she is becoming marginally less picky an eater. In the fall she swam and was part of a weekly group that explored Central Park; this spring she'll be doing Glee Club and soccer after school. 

But the real change is that she's thinking for herself. In one project, the children wrote their own book and hers was about when she got her cats. For MLK day, her dream was envisioning a world where everyone was vegan and no one hurt animals. For her first research project, she had to select an agent of change. I pushed for Bowie; she chose Henry Bergh (the founder of the ASPCA). Even though they fight a lot, she usually takes good care of her sister. And I am so proud of her. 

Teeny also went back to school, this time in the integrated classroom. This was absolutely the right move for her. Her speech is very clear now and she is imaginative and expressive. She understands what it means that we are vegan and we don't eat animals. She cares for her babies, cooks in her kitchen, loves mermaids and Bubble Guppies. She always wants me to be the baby and her to be the mama. She strokes my hair and tells me to go to sleep in her bed, she makes me sit in a chair that serves as the backseat of the car so she can drive me to Nana's house. Her adaptive ballet class is putting her little troupe on the stage of Lincoln Center in two weeks. She swims weekly and has outside PT where she tumbles and stretches and zips on a zip-line. She has a pretty great life.  

In addition to her PT, OT and speech sessions, she now gets play therapy twice a week. Originally the school didn't want to give this to her but I pushed and they ceded. And I'm so thrilled! Ordinarily play therapy is for children with behavior issues but I argued that Teeny needs it since she has difficulty expressing her emotions. In speech sessions she works so hard on articulation, pronunciation and expressive vocabulary that there is little time for narration. So twice a week she meets with the school psychologist and they work through a whole host of emotions. They often play with dolls and doctor kits and other interactive games to encourage her imagination. When the short sessions draw to a close, the psychologist has to prepare her for ending and transitioning, which is difficult and sad for her because she likes the sessions so much. This is really, really good practice for her.

The truth is that she seems to be going through a phase of getting easily frustrated. At four, it's totally age appropriate for her but it's also that she is mad at her body for not doing what she wants it to, at her mouth for not saying what she wants it to. And her frustration can be intense and hard to shake for all of us. There is a lot of pouting, arm crossing, huffing, even wailing. It would be easy for us to placate her with her iPad, with Laffy Taffy, with other things that make her instantly distracted. But we don't, because life isn't like that. And sometimes, when she struggles to soothe herself, we all suffer along with her. I am grateful for the play therapy because she gets to practice this in a controlled environment and we are learning how to help her through it at home. 

We stopped most of the Botox injections and her legs are getting stronger. She's using the rigidity and spasticity to help her stand, which she can do now with no hands for more than five seconds! We went through a very complicated process to have her approved for a mobility evaluation because with her new strength she needs a more lightweight walker. It took four months to get that appointment, but it's coming in two weeks and I can't wait. We have a wonderful physiatrist and an equally wonderful orthopedist who disagree fundamentally with each other about how to handle her legs, so when, a few months ago, she needed new braces and the ones that were made for her by the orthopedist's orthotist gave her painful sores on the insides of her ankles, we had to have them made again by the physiatrist's orthotist. As a result, she went for weeks without braces, which was terrible for her feet, and when we got them, she had to learn how to use them all over again, wearing them first for an hour a day, then two, then three. 

I have continued to wear her in a baby wrap long after most mamas stop wearing their babies. Because of her spasticity, I have to wear her with her legs closed, like she's riding side-saddle. She puts an arm around me and I put an arm under her legs and wear her like I'm sweeping her over a threshold. And I love every delicious moment. I can whisper with her, stroke her hair, breathe her in, feel her hugging me. But like her sister, Teeny is also getting taller, and she's getting heavy. This is problematic, because I can't carry her anymore. And her walker -- really a gait trainer -- is so heavy and clunky that she cannot use it independently for anything other than a physical therapy session. She can't use it to get herself down the street, or from one classroom to another. It's a big purple cage and it's hard for her to use. She hates it.

We have no choice but to adapt to life with a wheelchair, and none of us wants to. She doesn't want to be independent and I don't want her to have to be. It's a tough place to be, but we have to go through it. She's going to grow into a big kid, and then an adult, and she's going to need this independence in kindergarten and in life. So the lessons continue, for all of us. 

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?